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It was peak bloom season for cherry blossom trees last week.

Brian tried to recruit the family to join him on the stunning University of Washington campus, where the Quad is essentially a cherry blossom showcase.

It’s an event to witness.

But, my brain still wasn’t quite back after flaring from consuming tomatoes, which have now made a reappearance on my “Can’t-Eat” list.

I knew the place would be packed. (Crowds and I aren’t copacetic.) Plus, since we were having friends over on Sunday and I was out of commission all week, chores piled up. So, I chose to stay behind and do what I could before the exhaustion took over and my brain no longer functioned.

As I told my therapist, I feel terrible about our situation sometimes. I’m an introvert who seems extroverted (my nervous chatter can be charming, apparently). I need a decent chunk of time to myself each week, which I haven’t had since pre-pandemic. Brian is an extrovert with severe social anxiety—he just wants to spend time with people he cares about.

We spend just about all of our time together. We exist in the same space all day: parallel-working at home, dining together, watching TV together, or actually hanging out and chatting.

We’re technically always “together,” but not always doing activities as a couple or as a family.

The pandemic seems to have sucked the desire to try new things out of our family. It required us to bring in laptops for each child to be able to participate in school with, and now screens are firmly where the kids’ interests are tethered to.

Thankfully, one kiddo, Little, decided to go with Brian to see the fully bloomed cherry blossoms on Saturday. She brought her iPad to capture her own photos (and to play with in transit), and they got a beautiful Daddy-Daughter afternoon together while the teenager and preteen did what they always do—lounge around the house, playing on their devices.

The brain fog started to alleviate a bit after reducing the one antihistamine a couple of weeks ago, while increasing the dosage of and spreading out another.

About two months ago, I decided to go through all my prescribed and self-added supplements and medications, doing some research on each. It’s an action I do at least once annually, but never got around to last year. My goal with checking is to see if there are any redundancies, if something may be causing side effects and I need to quit it or mention it to a doctor, or if there are any possible medication-supplement interactions happening.

I see several doctors and specialists, and I want to double-check that different doctors’ prescriptions aren’t interacting poorly.

During this check-in, I discovered that one of my medications which needs to be diluted in water is supposed to be taken 30 minutes before consuming any food, four times daily.

Prior, I’d always take it right before eating, using it to throw back and swallow the handful of pills and supplements that help me to eat food, in general; but with a little more food-choice flexibility than if I ate unassisted. The medications-plus-enzymes combos make it so that my mast cells are better controlled to avoid mast-cell overreactions.

With the discovery (or “written reminder” since I know my original immunologist told me to “take thirty minutes before eating”) I finally started taking the diluted medication properly. But, with it, I found myself occasionally forgetting to take the rest of my medications—each one working to curb the body’s mast cell overreactions for different systems: digestive, brain, heart, lungs, skin, et cetera.

I’d sometimes forget the non-liquid medications, since the change broke my three-year-old routine. Especially when I was trying to work through lunch or was dining out with people; but frequently if I was having alcohol—something that would make it so that I absolutely should not forget to take the meds, yet did anyway.

Before having a drink, I’d take a digestive enzyme and histamine-blocking enzyme capsules, but not the full array of meds that helped better breakdown the food that would come soon after/later.

My brain clocked that early throw-back-of-the-head-and-swallow as: The meds have been taken. Commence consuming.

Even with meds, I still have “minor” histamine-reaction symptoms to most all foods:

I get sniffly, my nose will itch, I may flush a little (or a lot), and I probably need to clear my throat several times for about an hour. But, with various high-histamine foods, those mild symptoms become an all-systems-explosion. Last week’s symptoms included:

Palpitating heartbeat, acid reflux, burning skin and eyes and ears and nose, moderate-to-severe tinnitus, flushing and hives, itchiness, stomach cramps, bloating, gas, severe joint pain, swelling in my face and hands and feet and ankles. And, when whatever I consumed was high in histamines, histamine-triggering or -liberating, it becomes difficult to breathe, or I experience shortness of breath. And some triggers, when continually consumed or exposed to, can cause anaphylaxis.

Later symptoms—within anywhere from one to four hours after—always include brain fog with difficulty concentrating, and confusion. And with prolonged inflammation, my vision will blur, and my short-term memory vanishes.

I really pushed my luck on that thoughtless day, playing Russian Roulette with a nightshade fruit….

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I added tomatoes to my salad for lunch, not thinking. I love tomatoes, until I was reminded how much my body hates them. And I kid you not, I don’t remember what tomato-based dinner we had that night—the meal that caused this severe fog and the above-listed bodily reactions.

But, to make things a hundred times worse, I forgot to take my medications before eating that system-thwarting dinner. (Definitely why I forgot what we ate.)

I realized about five or six hours later, after taking my nighttime pills out of the four-times-daily pill dispenser, when the dispenser still rattled with the sound of a full compartment of meds. Upon quick inspection, I saw “DIN” was still full.

Then, it was like all the symptoms I was already fighting but unable to fully recognize became crystal-clear and present.

“Fuck,” I said, quickly throwing back that second round of pills, even though I knew it was too late.

I was just starting to feel better, dammit!

Mistakes happen. But I hope I eventually learn my lessons before further increasing my risk of a stroke or developing a heart condition.1 2

Things are turning back around, though.

I’m being hyper-conscious of what I eat again, bringing back The 4-Phase Histamine Reset book to review the food lists and give myself some fallback recipes.

I already struggle with “kitchen paralysis”—an executive functioning issue which can make it difficult to plan and organize cooking tasks; also accounting for sensory sensitivities around handling food, plus the smell-factor; motor difficulties; and even communication challenges play a role for Autistic people.3

That paralysis is catapulted to the max while I’m in a flare. But, sometimes my food choices—the one flare-factor I can control—are the only way to get out of a flare. Therefore, I have to make bold decisions on how to conserve energy in other ways. So, I resigned myself from projects for a time, and I’m focusing on getting back to baseline.

I’ll write when I can write, but my health needs to come first.

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On Sunday, we had a blast with our friends. The preteens hung out in the bedroom while the younger set of kids played on Little’s devices together at the kids’ computer desk (which Little has co-opted) in the living room where the adults chatted.

The husband-father-friend is also neurodivergent, and he shared something profound that I wish I had considered when writing about the Seattle Freeze before—the phenomenon that Seattleites are cold and unfriendly, and that it’s difficult to make friends in the city; especially as a transplant.

I didn’t find that to be the case, personally. I found the transient nature of the city to be my pain-point in local friendships.

He said (paraphrased), “The Seattle Freeze is really just people respecting other people’s boundaries; not forcing small talk and conversations to strong-arm-fulfill a personal need that may not be satisfying, or may be uncomfortable for the other party. If someone doesn’t want to make eye contact, they’re not judged and their boundaries are respected. If someone would rather not talk, they’re not judged and their boundaries are respected. More regions might be better served if they practiced the same form of social respect.”

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As a high-masking, trying-to-stop-people-pleasing Autistic woman, that deeply resonated with me.

As much as I wanted to spend the day with Brian, checking out the cherry blossoms and finally visiting the gorgeous UW campus, I’m proud of myself for opting out. I needed to recalibrate myself after being down with a flare with residual brain fog from the medication mess-up still, too. I needed to get the house in order to re-center myself.

And, if I hadn’t stayed home, we wouldn’t have gotten a (free!) brand-new washing machine. I mean, I didn’t put away the kids’ clothes like I told myself I would, but at least they’re clean!

Although the need for alone-time goes unfulfilled, other needs have been satiated. I’m beginning to feel whole again. My time feels more valuable and well-utilized.

I’m focused on no longer forcing things—myself, included.

I can do something, or I can’t. Feeling shame and guilt over taking care of myself is ridiculous. “Missing out” is person-to-person and situation-to-situation.

Brian said the photos don’t do them justice, but I was grateful for the real-time updates he sent.

Next year, I’ll go see the cherry blossoms in person. Brian and I will get that quality time together that I love dearly and that he needs to feel connected to people. (Of course, I’ll spend quality time with him before next year’s blooms, but you get me.)

We’ve got time.

And we’ve always got each other.

My best,

Sara

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P.S. I predominantly write from my personal experience as an Autistic person with ADHD, chronic illness, Anxiety, and more. Each of these factors can influence my individual experience overall, as well as my experience of each condition.

What I share is not a substitute for medical advice.

Self-identification of Autism (what many call “self-diagnosis”) is perfectly valid. If a personal Autistic experience I write about resonates deeply with you, consider these resources on Embrace Autism (starting with the Autism Quotient Test) as a first step. If professional assessment is important to you or your life has been impeded enough that you may need to qualify for Disability, you can print your results to bring to a diagnostician. (Having all those tests completed in advance saved me a lot of money!) Although there are many more diagnosticians available, here is a comprehensive list to get you started.

Lastly, some of my opinions may have changed since I first wrote the piece that lead you here.

Comment with any questions, and I’ll respond as soon as I can.

Leave a comment

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Ordinarily, I don’t realize how much I’m suffering until the suffering has alleviated or ceases on its own.

Life with Alexithymia and poor interoception is interesting, to put it mildly. I’m basically having to train my adult self how to interpret things that most (neurotypical) people learned to do in childhood, or seem to understand inherently.

Not me, though. I was the kid sweating profusely, looking like a roasting tomato in class. Another student came in late, and upon entering the classroom said, “Eww. It’s too hot in here. Can we get some A/C?”

Why didn’t I think of that?

Early last week, Brian said that he thought our mattress topper was no longer good. “It’s uneven, see—” He stripped the sheets off his side to expose the visibly lumpy cover.

Huh.

After one night with the new topper, I slept well for the first time in I-don’t-know how long.

To boot, I forgot to strip the duvet cover off of, and remove my one-person weighted blanket from the load during the midweek sheets-washing, which I usually do on Saturdays. By the time I was ready for bed, the weighted blanket still wasn’t dry. So, I used my 29-inch weighted lap blanket* instead.

I assumed it was just the upgraded topper helping me sleep. But over the course of a few nights, I tried to be cognizant of my sleep health and experimented with how I slept best.

I discovered that, without a weighted covering, I’m a lot more restless and my quality of sleep is severely reduced. The full-body weighted blanket is actually more of a sleep-disturber for me than the lap one is, which I cover only my lower ribcage and torso with, but still better than nothing.

There’s something about having my legs weighted down that caused sleep disturbances. Maybe the feeling of being trapped (or worse)? The lap blanket, however, makes me feel anchored and safe.

Contrary to the size of my body, I often feel like I’d float away if I wasn’t wearing a heavy coat or backpack out in public. And, at home, I have small, weighted blankets and shoulder wraps to help calm my nervous system and help me to feel safe and grounded.

But, knowing myself as much as I do right now, unless I hadn't messed up that day and forgotten to take the weighted blanket out of the sheets before washing them; I would have continued dealing with minimally restful sleep for whoever-knows how long because I don’t know any better until something is changed or someone else changes things up.

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Alexithymia is the inability to recognize or describe one’s own emotions.

For example, before my family was all diagnosed as neurodivergent, we tried to improve familial communication via Family Therapy.

Before each session, our therapist would ask how we were feeling at that moment. I’ve never had a clue how to answer that question honestly, but I also wouldn’t call how I would answer a lie, either.

Going 33 years undiagnosed, to get by, you’d have to learn how to constantly adapt and blend in. And blending in requires lots of understanding of people to mingle—hyper-vigilance, we could say.

I knew enough to be able to assign emotional terms to deeply introspected physical feelings if I felt any. So, if I felt pain that day, I’d say, “I’m feeling [insert: sad, frustrated, in pain].” If I said, “in pain,” the therapist would ask me to elaborate or ask me to assign an emotion to the pain—he was a stickler for the rules.

“I don’t know” wasn’t an acceptable answer for anything in my youth. As an adult, though, when I don’t have an answer for something knowledge-based, I say it: “I don’t know, but I can look it up.”

But, emotion-based? How can I not know how I’m feeling?

So, other people’s responses train me/high-masking neurodivergent people to always have some kind of acceptable answer, otherwise it opens us up to further interrogation or scrutiny. And, really, who wants that?

Poor interoception is a similar sensory process to proprioception

And it’s something I also struggle with.

In an article written by Amanda Morin on interoception for Understood,1 she stated, “Receptors in your muscles and joints tell you where your body parts are. That’s the basis for your proprioceptive sense. It makes you aware of where your body is in space. When you take a step, for example, you know your foot is off the ground. You don’t have to think about it. [People] with poor proprioception have trouble with this.

“Interoception is a similar process. But the receptors are inside your organs, including your skin. They send information about the inside of the body to the brain. This regulates vital functions like body temperature, hunger, thirst, digestion, and heart rate.

“Interoception helps you know and feel what’s going on inside your body. You can tell if your heart is beating fast or if you need to use the bathroom. You know if you’re hungry, full, hot, cold, thirsty, nauseated, itchy, or ticklish.”

I, for example, generally don’t know or feel a good deal of these sensations until they’re cranked up to their max.

I’ve heard friends say their tummy is rumbling or they “could eat in the next hour or so.” That boggles my mind. I feel one of two sensations: I’m not hungry, or I’m ravenous and possibly ready to vomit—a lesser, interesting response my body experiences when going without food for an extended period of time. But definitely burping up acid that lasts the rest of the day happens if I don’t eat at least three small meals a day.

I have to set alarms to remind myself to eat. When I didn’t, I would go without breakfast (or lunch sometimes too) and over-eat for dinner as my body shook violently from low blood sugar.

It’s why I also just go ahead with the shockwave therapy treatments (for Ehlers-Danlos Syndrome2) on my feet and ankles every six weeks, even if I didn’t think I needed it going in; it helps keep my connective tissue more “regulated,” and leaves me with much less chronic pain and with fewer injuries overall.

Although this has only happened a few times, I’d walk in feeling fine, but during the podiatrist’s foot exam, we’d notice I had some spots that produced minor pain. Or, I wouldn’t notice until the shockwave gun went over a painful spot that there was even a problem at all.

In those times, I walked into the office thinking we’d have a quick exam, and I’d be out the door without requiring the treatment, simply following up in another six weeks.

But, no. With the actual shockwave treatment, if there’s no pain, there’s no injury. I’ve had only one session in three years that produced very minimal pain-feedback from the shockwaves.

The main session that comes to mind where I walked in thinking everything was just fine was the third most excruciatingly painful treatment I’ve ever endured.

I just don’t know what my body is trying to tell me.

But, I’m working toward learning that skill to better take care of myself.

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Due to the nurse at my (now former) immunologist’s office blocking approval on refills several weeks before our appointment, I’ve had to reduce my make-or-break antihistamine, Ketotifen (for MCAS3) over the past few weeks.

Unfortunately, it’s a drug that’s not FDA approved; I have to order it through Canada, and it’s shipped from India. (It’s currently en route, thankfully, but it’s been in Belgium for three days, and I’m getting nervous. I have about a week and a half of reduced-dosage meds left….)

It can take three to five weeks to receive it after the order is confirmed.

Although I was sick and have minor congestion leftover, the brain fog and fatigue have been unmanageable. But, it’s been going on since I got COVID back in 2022, which seemed to change my brain, but got really bad in the last six months.

And it’s seemingly gotten worse since reducing the Ketotifen in attempts to not have to stop taking it outright.

Now, I’m far behind on my projects, and barely have the capacity to take care of my weekly recurring tasks that are in place to help me maintain a professional and even personal baseline.

Laundry is piling. The house is a mess. Paperwork is overflowing in the little organizer-slot designated for it. And, outside of writing this, I left “complete and turn in ballot” as the only other thing I’ve forced myself to do over this past week…. and I procrastinated both until this morning, and the deadline at the ballot dropbox is tonight.

I had my immunology follow-up on Friday and brought up the brain fog, fatigue, weight gain (dammit), and worsening heat intolerance to my doctor.

She said, “You have to decide what’s important to you. You have two choices: You learn to survive with the mast cell symptoms, or you deal with the side effects of the antihistamines.”

It was my second appointment with this new doctor, and it was my last.4

The thing is: I didn’t notice the correlation between the brain fog, fatigue, and the increase in the cetirizine antihistamine dosage that she told me I needed.

The Ketotifen—which the immunologist blamed for all the side effects—was increased by 1 milligram while the cetirizine was increased by sixty. I also explained that the symptoms got significantly worse only after I had to reduce my Ketotifen to two milligrams daily from four.

My primary care physician pointed out these connections when we reviewed my medications list for my three-month check-in two days before I met with the immunologist. If she hadn’t, I’d still be taking 80 milligrams of cetirizine (in addition to three other antihistamines+, mind you), and I would’ve had to skip writing to you yet again this week because I couldn’t.

I’ll be frank: I’m frustrated.

Contrary to my vulnerable moments of confiding in you and in people I’m close to off-line, I’m a generally hopeful person. I try not to let things keep me down, and I try my best not to let my low-moments make others feel down, too.

But, I’m struggling.

I’m ashamed to admit that, after the immunologist’s nurse rejected my refill request several weeks ago, I said, “Is this what my life will be like?” Crying as Brian held me. “Is this worth it?”

Without the full story, maybe that seems dramatic. (And I’m certain it’s not the first time I’ve said or written that.) But when your neurophysiology—something you can literally do nothing to change outside of creating life-bandages to get by with—exacerbates other conditions, it feels extraordinarily defeating.

And when the medications that are supposed to help one condition’s symptoms worsens your ability to function as even a very part-time-working human who can barely put the bare-minimum into a personal life, too, it feels debilitating.

After allowing myself to steep in self-pity for a beat, I decided to focus on small action-steps to help lift myself back up.

The now-former immunologist agreed that I could spread out a different antihistamine throughout the day instead of two large “dosing-dumps” twice daily of cetirizine. And, so far, it’s helping.

Thank goodness.

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I knew there was no way around the fact that I will not make progress until I can listen to my body.

For me to be able to listen to my body, it will take focus, dedication, and intention. And help.

I’m still on the hunt for an occupational therapist who works with AuDHD (Autistic + ADHD) adults that takes (my, but some don’t even take any) insurance. Until then, to fill in the blanks, I found a book called The Power of Focusing*.

From the back cover copy it’s described as a “…simple and natural process that allows you to develop an honest, productive relationship with your emotions.” Although not specifically designed for neurodivergent people, it’s a book that guides you through easy steps to strengthen your mind-to-body connection through a meditative, focused practice.

I’m still in the early chapters, but already finding it useful.

At times, it reads a bit woo-woo, and the introductory pages absolutely seem like such; but I’m stripping the skepticism from my reading experience and trusting the process.

Presently, I’m focused on taking each day one day at a time.

When I’m tired, I rest in some way, whether that be closing my eyes at my desk for a few minutes or lying down to take a nap.

On the rare day that I have some energy, I go for a walk. I’ll sit down at a coffee shop or come back home to my upgraded workspace, and I write.

If I can muster up enough energy to dabble in another project, great! But I’m not forcing this.

I’m ready to get my brain back. I know it’ll take time, and I still run the risk of backsliding with the warmer months ahead, but I’ll do everything possible to continue writing.

Thank you for your patience.

I’m hanging in, and I appreciate you hanging in with me.

Much love,

Sara

     subscribe to | my free, sporadic newsletter

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P.S. I predominantly write from my personal experience as an Autistic person with ADHD, chronic illness, Anxiety, and more. Each of these factors can influence my individual experience overall, as well as my experience of each condition.

What I share is not a substitute for medical advice.

Self-identification of Autism (what many call “self-diagnosis”) is perfectly valid. If a personal Autistic experience I write about resonates deeply with you, consider these resources on Embrace Autism (starting with the Autism Quotient Test) as a first step. If professional assessment is important to you or your life has been impeded enough that you may need to qualify for Disability, you can print your results to bring to a diagnostician. (Having all those tests completed in advance saved me a lot of money!) Although there are many more diagnosticians available, here is a comprehensive list to get you started.

Lastly, some of my opinions may have changed since I first wrote the piece that lead you here.

Comment with any questions, and I’ll respond as soon as I can.

Leave a comment

Any link listed with an asterisk(*) behind it is an affiliate link. By using that link to purchase an item, you provide me with a small commission at no extra cost to you. Although small, these little income boosts help to keep Life and Other Stories going, as well as help fund any in-the-works projects. Thank you for your contribution! I’m grateful.

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Brain fog has overwhelmed me the past two weeks.

The “bug” we caught last week was probably COVID.

In my experience, COVID has been the only persistent bitch-ass virus that gives me unwavering brain fog for a time. (“For a time” potentially being years, at this point…).

It’s unbelievably frustrating, but I’m working my way around it. Slowly.

A lot happened this week.

I hit a moral, figurative brick wall with some people in my life shortly after I’d written a generous essay featuring them. I spent my therapy session this weekend talking about it, and had a general idea for how I wanted to approach things that allowed me to sleep the night-of. And now after talking to a friend, I feel significantly more confident with an action plan underway.

Dealing with people has never been my strong suit. I’m hopeful I’m doing the right thing for, at least, the young people involved.

Anxiety is a jerk. Tossed with an extra dash of over-thinking and a heavy dose of Autism with ADHD (plus, I’m sure, c-PTSD doesn’t help, either), I question myself constantly. But one thing I know for sure is, with compassion in mind, that my gut instinct always has my best interest at heart.

Yet, something I’ve learned after working hard on growing my awareness of self and of others over the past few years is that having self-awareness sucks sometimes. It’s so much more work. And as someone whose neurology doesn’t offer features such as the ability to create legitimate habits (everything is intentional) or engage in a sort of autopilot (unless I’m dissociated1)—every single thing I do requires a decision and manual, sometimes step-by-step instructions wire-transferred from my always overloaded brain, and delivered to the areas I need to function as needed.

Just a few minutes of being “present” with my own thoughts is sometimes enough to exhaust me for a couple of days, even.

This manual work isn’t as black and white as me telling my body to “take a step with the left foot, take a step with the right foot” to be able to walk. But most actions require intentional operation commands, of sorts: A constant stream of in-brain voiceovers and conscious, self-provided instructions.

That is, if I want to get anything done, of course.

Here are a few beats in my head while out, walking home from my favorite lunch spot last week:

That sound (in the distance) is irritating. Try not to think about it.

Okay, trying not to think about it makes it more intense, for some reason. Focus on something else. …

That’s not helpful, either.

How can I think about anything else with that sou—

Oooh! Be careful of that rock ahead—you so clumsy. If you fall bad enough, no one will be able to get your big ass off the ground. Ugh, then there’d be more physical therapy, and— Eww! The person ahead of you just coughed: Hold your breath for 30 seconds—don’t inhale their nasty suspended spittle, or whatever the heck that stuff is called.

Phew! (Gasps, trying to be quiet.)

Should’ve breathed in before holding my breath!

I didn’t realize how pretty this neighborhood is. It’s actually quite peaceful.

Still, don’t wanna live in the ‘burbs. Not even the urban suburbs. This is gonna be a 30-minute walk, and my left knee and right Achilles are already protesting. I’ve really gotta stop pushing my body so hard.

Maybe I should go back a block and catch the bus. But it’s just four stops, and it’s out of the way, technically. If I take the bus, then I’d have to catch the streetcar home, too. It actually might be smarter to walk. I don’t know. What if I get hurt worse? Ugh. I never learn…

Stop that. Don’t talk to yourself that way. You do learn. You just have poor prioritization, and all the ‘little things’ seem louder, requiring immediate attention most of the time. Or, it’s probably just because they’re easier to process and tackle, and you need ‘simple wins’ to give you enough dopamine to make getting up in the morning motivating enough to be worthwhile.

But, if I get hurt, I’ll have to extend PT…. I already have to get shockwave therapy done every six weeks. What more do I want to pile on..?

(Still walking, further away from the bus stop.)

Crap. I forgot to schedule physical therapy for [Middle]…. Should I stop for a second and make a Note? Will I check that again? I’ll just forget it…. Besides, if I look at my phone now, I’ll keep thinking about other things to do on the phone for the entire walk, then ruin productivity at home by getting stuck in a scroll.2

I could do a voice note… that I’ll never listen to.

Oooh! I could text myself. That’s actually a good idea. Dictation.

Okay: Don’t forget to schedule PT for [Middle].

Annnnd sent. Hmm. Doesn’t someone-or-other make an e-ink cellphone?3 That would be so much simpler and better for me—I don’t need a mini-computer with me at all times. Except for music. iPods aren’t a thing anymore, are they? I think the e-ink phone I was looking at a while back offers GPS—that would be amazing. But I think Brian said they’re not secure or something like that.

Second dictated text to self: Look up e-ink cellphones again.

Fuck! Uneven pavement! Ouuuuuuch! Frigging flimsy body!

Third dictated text to self: Mention ‘crappy right ankle’ to the Physical Therapist while you’re bitching about all the other joints and ligaments.

Or should I just wait for the next shockwave treatment..? I don’t know. I’m so tired. And that sound is still fucking annoying.

Welcome to my head, only without the buzz of all the indecipherable thoughts rambling on in the background.

I go to sleep with these thoughts, and wake immediately with them.

They’d keep me up all night if it weren’t for the prescribed, multiple sleep aids I have to take to even fall asleep.

Hashtag: Grateful. (“Hashtag” isn’t a thing anymore, is it? Whatever.)

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One.

As Tayyaba Rehman defined on AskDifference, “A ‘habit’ is a recurrent, often unconscious pattern of behavior acquired through frequent repetition. A ‘routine’ is a fixed program or set of actions followed regularly, often consciously designed.”

I’ll write more about the Autistic brain’s (for most) inability to form habits versus the beneficial and often our deep-seated need (and possibly [probably] obsessive tendencies toward) routines, instead. I recently found out from AuDHD creator Purple Ella that they’re not the same thing, and had to look it up to confirm.

Additionally, Purple Ella made a Short on mini routines as an AuDHDer—small routinized tasks like an AM and PM “get ready for” and “take off” the day actions that ground her and satisfy the Autistic need for “control” (routine), including other mini-routines like eating meals and caring for [insert: pet/plants/etc.], while satiating the ADHD dopamine chase woven throughout the day.

It’s nice to have an even made-up name that validates what I carved out for myself years ago.

They may not be automatic “habits,” but they help me to feel in control of the beginning and the end of my days. Works for me!

Two.

I love music and singing various songs across several genres. Although classically trained and was a budding semi-professional opera singer in my late-teens and early-20s, I actually prefer to sing high Contralto/Alto to hard rock/Nu metal songs.

I always loved the sound of these genres, but never understood why singing them was so preferential to me until this week.

A few months ago, I reacquainted myself with the band The Pretty Reckless. It was right around the time I was watching Gossip Girl out of curiosity (and pulled a lot of parenting advice out of it); I remembered the younger sister of one of the lead characters played Cindy Lou Who from Jim Carrey’s How The Grinch Stole Christmas. Then, remembered she had a band that I recalled liking years prior.

Although the lead vocalist, Taylor Momsen, can hit one note lower in our similar octave range. I’m a Contralto/Alto/Mezzo Soprano/sometimes-can-still-hit-Soprano-notes Soprano and a “whistle note. ”Thanks to aging, it’s very in-my-head-voice notes now—and she’s a solid Contralto (think: Cher)/Alto (think: Adele).

My “comfort range” is Alto/Mezzo Soprano. Otherwise, Taylor is my “vocal doppelgänger” in the sense that I usually sing men’s songs best for more popular or modern music because most women’s songs are too high for me. Taylor’s songs feel tailored to my voice. (Pun intended. But minus some rasp—I wish.)

In my youth, I’d fall for the sound of a song over the lyrical content. But age and probably the deepened obsession with words made me fall for a wider array of songs and music I previously wouldn’t touch.

Just this week, I discovered why: Trying to match Momsen’s gorgeous vocal range, pitch, and vibrato is the perfect vocal self-stimulatory behavior for me—my perfect “vocal stim” music.

Particularly, this song—apparently a love song—is my absolute favorite to sing for the total body and brain-calming it offers me:

If I could sing this on a loop all day, I’d probably be my most regulated self. But, I have a feeling my family would get sick of it quickly. And maybe me too, at some point.

ADHD and Autism don’t often make the best bed fellows.

Autism: I can listen to and sing the same song all day, every day, on a loop.

ADHD: Find another fucking song before I lose my frigging mind!

AuDHD: Listen to the same song because you love it so much, then burn out on it and don’t listen to it again for years, if ever again.

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Three.

The lovely Katie Hawkins-Gaar wrote about “grief math” this week.

Such a heartfelt and grounded piece.

Katie wrote, “By identifying significant dates, years, and ages, we create new touchstones—another way to connect with the people we miss.” This is true, in my experience. Even if it sneaks up on us, it still packs the same punch of equal parts pain and gratitude for the time you got to have with your passed-on loved one. And a forecast for future life-markers that may simultaneously ground and dissociate you.

Four.

And Amanda B. Hinton of The Editing Spectrum published a questionnaire from Autistic writer, Amy Yuki Vickers.

When asked about a recent “creative spark” that she was really excited about, yet ultimately fizzled out, Amy responded, “It depends on where you draw the ‘fizzle’ line. I’m a perfectionist, so I’ll rework things until I’ve memorized them. I don’t consider it a fizzle to move onto something else. My creative life is like a long road trip. I might see mountains, cities, beach sunsets, etc., but my momentary focus on one thing doesn’t diminish my appreciation for the others. Sometimes, I go back to projects years later. So, I guess that, for me, there’s no such thing as a true fizzle.”

Something I’ve discovered is that my perfectionism is a form of Autistic masking and people-pleasing—often one and the same. If something it’s “perfect” then people won’t like me/people will be mean to me. I guess that’s a trauma response, also.

Amy went on to say, “Of course, there are disappointments. I ‘give up’ all the time, but the thing is, I keep waking up the next morning wanting to write. And, just like on a road trip, there’s nothing to do but get out of bed and keep going.”

I admire Amy’s ability to communicate and way of beautifully describing this. And I agree entirely.

Five.

“If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.” —Martin Luther King, Jr.

My best,

Sara

     subscribe to | my free, sporadic newsletter

     get the | Content Strategy Planner

     support my work and | “buy me a coffee”

     visit the website | segwrites.com

P.S. I predominantly write from my personal experience as an Autistic person with ADHD, chronic illness, Anxiety, and more. Each of these factors can influence my individual experience overall, as well as my experience of each condition.

What I share is not a substitute for medical advice.

Self-identification of Autism (what many call “self-diagnosis”) is perfectly valid. If a personal Autistic experience I write about resonates deeply with you, consider these resources on Embrace Autism (starting with the Autism Quotient Test) as a first step. If professional assessment is important to you or your life has been impeded enough that you may need to qualify for Disability, you can print your results to bring to a diagnostician. (Having all those tests completed in advance saved me a lot of money!) Although there are many more diagnosticians available, here is a comprehensive list to get you started.

Lastly, some of my opinions may have changed since I first wrote the piece that lead you here.

Comment with any questions, and I’ll respond as soon as I can.

Leave a comment

To receive new and infrequent musings, the latest fiction and non-fiction narratives, updates, and "life nuggets”, subscribe here.

SIGN UP FOR FREE

It’s hard to believe we’re moving in a week.

It’s been a slow process. Brian was at the office for most of the week for a team event, and one of my kids was home all week in his place.

I was looking forward to having the house to myself—I work best around the house (under all circumstances) when everyone is gone.

Sometimes it’s just nice to be in your own home, alone, too. Especially when you’re used to people being around constantly. I was really looking forward to that.

Extroverts may not understand—I get that. And people who know me in real life might read that and think, Whaaaat? You love people. What are you talking about?

I do love people. And I especially love being around and engaging with great people. But, I’m also one of the stereotypical Autistic people who need alone time often. I rarely if ever get it, though, so I end up spending an extensive amount of time in the bathroom on purpose. It’s my break from external stimuli. Although, my three AFAB children have it in their heads that it’s okay to just unlock my bathroom door with their superhuman-strength fingernails and enter without knocking to talk or ask for something. (When they typically had to pass their father to reach my closed and/or locked door.)

I’ve joked to the family that, when they do that, it just resets my “alone-time clock,” and I then need to spend even more time in there to recuperate from the interruption.

Nobody finds that “joke” funny but me, of course.

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With some help this weekend, I forecast that this will be the most efficient move we’ve had yet. Even with the last four moves being shifts within the same building (including our move-hiatus at the beginning of 2023 after swallowing our pride and just paying the rent increase), I’m surprisingly not rusty at this.

I took time after we put in the applications for the new place to create moving templates for my Supernote e-ink device specifically for moving. They’re fairly generic, but I need them for those times when my brain gets lost or bogged down in the next steps.

The tighter deadline than previous moves turned out to be incredibly helpful, actually. Of course, it was only tighter because I somewhat procrastinated….

I’d hauled out the kitchen, pantry, and kids’ room not long ago. And I did my closet a couple of months before that. But, things changed once I knew we were going to move. It gives me license to be more ruthless when I know all these items will cost us more money to move than toss or donate. The less stuff we have to move, the more we end up with in the end—more money and time, at least.

I get overwhelmed easily in the chaos of moving. Once items are no longer in their organized homes—hidden away in cabinets, closets, bins, and drawers—and bleed out into our living space, I struggle significantly more than usual. ADHD leaves me starting multiple projects at once amidst the disordered mess, trying desperately to control the disarray through multiple avenues over focusing on one area at a time and just completing that.

Then, Autism (probably exacerbated by the ADHD-driven “multi-tasking”) leaves me overstimulated and wanting to go hide in the bathroom.

By Friday, I was overloading, and took a break to start this message and meet up with a friend.

So, so needed.

I got these 12” x 12” x 12” clear, collapsible bins* to move our books with, and just fell in love. After throwing out multiple broken plastic storage tubs, these will replace those after the move. (Although most of the items in those broken storage bins are now gone.)

Now comes the stage where we still have to live and function in the space for another week. But, once we pack up all the don’t-need-them-for-the-week items, we’ll officially have cramped every free space in our home. Unlike with most houses, there’s no garage to dump things in to allow moving-about room inside. Plus, we’ll need to bring everything up from storage on move-day anyhow.

Things are still feeling good, though. There’s been lots of interpersonal progress in this timeframe, too, so I’m feel extra at-peace right now. We know that’ll change by Friday when we officially get the keys, then work all day on cleaning the new place and stringing up lights, all before 3:40PM—when it starts getting dark and the kids’ buses begin arriving for drop-off. Then, Saturday is plants and kitchen-moving day. Since our in-building shifts began, we discovered the extensive money-saving and move-day stress reduction of already having lighting set up, and the extent of our kitchen items moved over and placed in their new home in advance. That way, we don’t have to worry about unpacking in dark spaces, nor about food or rushing to get the kitchen set up if actual move-day moving takes longer than expected.

Even if we order pizza for the night because we’re all too beat to cook, still, plates are where they’re going to live for at least the next year. (Hopefully indefinitely. I don’t want to move anymore, dammit….)

I’m ready. Ready for it to be over, but ready all the same.

SUBCRIBE TO *NEW* NEWSLETTER

One.

“Revenge (bedtime) procrastination” is absolutely a thing. YouTube creator ADHD Vision is a licensed professional in Germany who covers lots of different content on ADHD. Seeing that this topic is becoming a new obsession since I ignored it while preoccupied with chronic illness and Autism information, these little break-time Shorts-watchings are giving me so much more insight into myself.

After watching the below-linked Short, it immediately made me think of when we had our teenage house guest over the summer.

Let’s put it this way: I can talk (e.g., ramble on and on). One of my kids is quite a chatterbox, too, and another one is just coming into her own in the Chattersphere. But, our guest—without her full array of entertainment items accessible, left behind in the comfort of her own home 2500 miles (4,023.36 km) away—required constant interpersonal engagement.

I could not handle it.

This is when I recognized that I binge TV shows to escape (when I’m not holed up in the bathroom, that is).

I felt terrible.

I tried my best and communicated with her that I often need to “recharge” by being alone, even when people are around. But with her friend—my oldest—also discovering that the constant stimulation of someone outside the family being in our home being too much for her, she fully retreated. So, I was left over-extending myself socially every day to try to keep her friend entertained, and, still, not cutting it for our guest’s needs.

This Short on ADHD’s dopamine-chasing, sense-of-freedom bingeing from @adhdvision helped me identify what felt like an unhealthy, addictive behavior for what it really is: A release. A sense of control. A gift of reprieve I can give myself.

Two.

Brian and I finished the second season of Loki earlier this week. I want to rewatch the first season now, but the second was absolutely fantastic.

I’ve enjoyed most all the Marvel “superhero” TV series (although we didn’t finish The Falcon and The Winter Soldier, but I can’t remember why at this time). The series are more focused on the world-shaping backstories and after-stories of the characters versus all the only-we-are-capable-of-saving-the-world-(again) superhero-y stuff. Still, unlike Jodi Foster’s view of the whole superhero genre, at least as a late-diagnosed neurodivergent woman who’s having to learn self-awareness as it’s not innate to me, I take something away from everything I watch. (I don’t finish what doesn’t serve me, so.)

I enjoy superhero movies for the camaraderie. I love observing different relationship dynamics. That’s what is really entertaining and informative to me.

Three.

Although self-awareness is seemingly a major struggle for neurodivergent people, it’s not uncommon with all neurotypes. From a study of 10 separate investigations with nearly 5,000 participants, organizational psychologist Dr. Tasha Eurich’s team of researchers “examined what self-awareness really is, why we need it, and how we can increase it.” They gathered that, “...though most people believe they are self-aware, only 10 to 15 percent of the people we studied actually fit the criteria,” as relayed in an article on Harvard Business Review.

YouTuber Fads added in a video that, with introspection and excessive introspection (guilty), there’s an innate human need to ask why things happen, and, “Why do I (even) care about self-awareness?” He said, “Explanations add sense and order to the things we do, and they make the world feel like a more comfortable and less messy place.”

“There’s just something really unsatisfying about having an explanation without a cause.” Adding that, “This human compulsion to find explanations is one of the things that can actually be holding us back.”

As I know well, and as Fads pointed out from Dr. Eurich’s research, often the most introspective people aren’t always the most self-aware.

Personally, introspection offers me self-understanding. As a late-diagnosed neurodivergent person, self-investigation offers me insight into how my neurology affects my day-to-day life, why I make the choices I do, etc. But, otherwise, I’m still a relative enigma to myself.

When I uncover something new, another puzzling action or choice surfaces, begging to be probed. But, as Fads beautifully points out in his video, “…the more time reflecting about their own thoughts and feelings… [and] spend too much time in our own heads, we end up creating these narratives about ourselves. We create a system of internal logic, and everything we experience and feel has to fit into that little model that we’ve made about ourselves, even if it doesn’t reflect reality. Excessive reflection basically lets your own biases take over, and it becomes the yardstick by which you interpret your reality.

“You can go from self-reflection to self-rumination.”

Well said. Although, I try not to approach self-reflection so rigidly. My brain was already rigid due to its wiring. I work against that now, and self-investigation helps keep that in check. For me.

There’s so much in his short video and in the article, but I’ll wrap this section with a quote from near the end of Fads’ video:

Self-awareness is useless if you’re not using it to ultimately reach a state of self-acceptance.

Agreed.

If you’re interested in going deeper, Dr. Eurich wrote the book on self-awareness, Insight.*

Four.

In preparation for the move, I’ll leave us with this quote:

“If you’re brave enough to say goodbye, life will reward you with a new hello.” —Paulo Coehlo

My best,

Sara

     subscribe to | my free, sporadic newsletter

     get the | Content Strategy Planner

     support my work and | “buy me a coffee”

     visit the website | segwrites.com

P.S. I predominantly write from my personal experience as an Autistic person with ADHD, chronic illness, Anxiety, and more. Each of these factors can influence my individual experience overall, as well as my experience of each condition.

What I share is not a substitute for medical advice.

Self-identification of Autism (what many call “self-diagnosis”) is perfectly valid. If a personal Autistic experience I write about resonates deeply with you, consider these resources on Embrace Autism (starting with the Autism Quotient Test) as a first step. If professional assessment is important to you or your life has been impeded enough that you may need to qualify for Disability, you can print your results to bring to a diagnostician. (Having all those tests completed in advance saved me a lot of money!) Although there are many more diagnosticians available, here is a comprehensive list to get you started.

Lastly, some of my opinions may have changed since I first wrote the piece that lead you here.

Comment with any questions, and I’ll respond as soon as I can.

Leave a comment

Any link listed with an asterisk(*) behind it is an affiliate link. By using that link to purchase an item, you provide me with a small commission at no extra cost to you. Although small, these little income boosts help to keep Life and Other Stories going, as well as help fund in-the-works projects. Thank you for your contribution! I’m grateful.

To receive new and infrequent musings, the latest fiction and non-fiction narratives, updates, and "life nuggets”, subscribe here.

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Things are falling into place now.

I stopped most everything else I fought to try to keep up with, and have focused namely on moving.

With just two weeks to go now, the house almost completely hauled out (although I’m aiming for a second look-over, just to be certain), and the exciting discovery of compact-to-store moving bags, I’m feeling good. That, plus I met with my new immunologist this week, and she hooked me up with an excessive amount of Cromolyn Sodium1—a medication to combat the effects of MCAS2 on my digestive system, which also supports mast cells surrounding other organs (e.g., skin, lungs, heart, etc.).

Since Cromolyn’s initial prescription over a year ago, it’s frequently gone out of stock entirely. It’s been a nationwide problem, but seemingly extra-bad in Washington state. (I joked that it’s because MCASers flock here for the mild climate, but I doubt that’s it. The rest of Washington state can get hot and cold.)

Since the beginning, I’ve had to ration this medication, taking half the amount prescribed the entire time. The stress every month was palpable. As I’d get low, I’d have to call every pharmacy in Seattle and beyond, mortified when none of them had any. And when one pharmacy would have some, it was either already spoken for.

And I’ve heard, “It’s backordered,” more times than I can count….

Yesterday, I was finally able to take the proper dosage for the very first time. And I actually feel decent today.

It felt frivolous to take the proper dosage. Even as I stared down into the Amazon Pharmacy box filled with 6 boxes containing 96 ampules each of Cromolyn Sodium, and squeezed two 5mL tubes into my cup of water, it felt like I was taking a giant risk doing so.

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When the order arrived late Friday night, Amazon marked it as “delivered to receptionist.”

I was nervous. Sometimes package deliveries take a while to get logged into the building’s package notification system, especially for after-hours deliveries. But being out of medication and having suffered for three days while trying to pack and haul-out (even while on a strict low-histamine diet3), I raced downstairs as soon as the Amazon notification buzzed on my phone. The lobby was filled with people lounging in a cozily designed space around the fireplace, spruced up by blue and silver holiday decorations. The other common areas of the building have been closed for construction for months.

(Aside: I’m fascinated by people who can actually relax in an open, public area like that. Leaning back and “relaxing” means I’m no longer on-guard. And if I’m not on-guard, I’m open to danger…. Oh, the life of someone with trauma.)

The nighttime concierge was nowhere to be seen. I waited, impatiently, focusing hard on making myself look as chill and patient as possible.

A leasing agent was just closing up for the night. I asked if he could help me with an “overflow package,” and he kindly obliged. (Residents don’t have access to that separately locked room behind the concierge desk for packages too large to fit in the locker system, or if the lockers are full, that’s where the overflow ends up.)

As we approached the concierge desk, the temp nighttime concierge popped out of a back room. I gave my apartment number, and more people filed in behind me waiting to get their packages too. The concierge came out with a large box—not at all what I expected. I started to panic. I didn’t order anything else from Amazon that warranted a box of that size and weight.

I started rambling, dismay taking the wheel in my brain. I ripped open the box right in the lobby. When I saw the mountain of Cromolyn Sodium, I bursted into tears. The lobby went silent.

“Happy tears, happy tears,” I said, trying to contain myself. “Sorry. This is a medication I’ve struggled to access for over a year, and my doctor hooked me up. I haven’t felt this level of peace and security in a long time. Sorry—life is miserable without this.”

I laughed, tears continuing to spill down my face. The woman behind me was smiling, eyes welling when I turned around. I didn’t make eye contact with anyone else, but thanked the concierge and leasing agent.

I cry-laughed all the way up to our apartment, continuing down the hallway, and letting loose as soon as I opened our door. My oldest rushed over, asking repeatedly if I was okay. I said, “Look at this,” and plopped the box down on an empty barstool. She looked in the box, her face contorting. Brian came over. “I can’t believe this,” I said. “All this time!” Brian hugged me, smiling.

I’m so happy, I can hardly contain myself.

I was giddy all day Saturday, even after a seemingly unstable person just grabbed my Supernote device while at a coffee shop, working on this message before therapy. (He just thought it was cool, but still; don’t touch people’s stuff without permission. He apologized profusely and offered to buy me lunch. I politely declined, grabbed my stuff, and left. Still, happy as can be, just a bit shaken.)

I didn’t realize how much stress this continual medication stock issue caused me for so long.

So, yeah. It finally feels like things are starting to fall into place.

SUBSCRIBE TO *NEW* NEWSLETTER

One.

Brian and I will finish Season 2 of the show Togetherness tonight, probably. I love it. It balances some rough, real-life dramas with comedy masterfully, and it’s well-acted. I swear the lead character Brett is Autistic, but apparently he’s based on someone with depression and anxiety. I relate to each of the leading four characters, and although some of their choices and behaviors are occasionally tough to digest, I enjoy entertainment that opens my world up, making me look at/take notice of or consider things differently. And it’s offered Brian and I a lot of conversation topics as a couple.

I highly recommend it, even though apparently the show was cancelled (dammit), and it’s 8 years old now….

Two.

Seriously, if you haven’t heard of moving bags (it’s okay if I’m the only late person to this though), I also recommend them. I got some extra-large ones* to move our bedding and linens, and some medium-sized ones* for closet items, books, and any non-fragile items. Otherwise, Bankers boxes* are the absolute best if you’re like us, move almost annually, and prefer to keep good quality moving supplies for each move.

I’ll add that our movers love us (or so they say). After the last move, when they saw our uniform, same-size boxes, they thanked us. If you’re self-moving, sure, you can save up those package-boxes and try to snag free produce boxes and such from the grocery store, etc. But professional movers apparently can’t stand hodgepodge boxes of various sizes, and it ends up costing you more in the end with all the added time it takes them to play Tetris with your shit on a moving truck. Plus, as the movers told us, those hodgepodge boxes are much harder to handle, which technically makes any moving—use of movers or not—take longer. Quality, uniform-where-possible moving supplies is the way to go if you can. It’s certainly been easier for us to deal with everything thus far.

And hopefully the movers are good with the moving bags. 😅🤞

Three.

In my break-time scrolling of YouTube Shorts, my feed is now filled with content on “boundary-setting” with people.

I recently had to tell someone that if they mention me moving back to Florida again, I won’t respond to that conversation any longer. (With this person, it’s a constant problem. In every single conversation, it’s shoved down my throat. As a chronically ill person, it feels invalidating; like they don’t take me or my health needs and why we had to leave the state seriously. Every time it’s mentioned, it hurts me deeply).

Go figure, YouTube to the rescue. But now I’m bombarded with stuff on boundary-setting and content on dealing with narcissists….

After clicking one relatively unhelpful video on the topic, a recommendation below it was on “Boundaries Don’t Work — Here’s Why.” Intrigued, I clicked it and listened while hauling out our bathroom. It’s worth a visit.

And if you function more from a trauma-filled past, I highly recommend the Crappy Childhood Fairy’s take on boundaries, as well.

Four.

I also came across really helpful Shorts and videos on ADHD from ADHD Love. I hyper-focused so much on in-my-face health issues and Autism that I completely neglected helpful information on how ADHD can affect my life and how I interact with the world, too.

Their videos are helping me feel much more self-compassion.

A recently watched Short of theirs that really hit home hard was on what I’ll deem “masking,” titled: Trying to become neurotypical led me to low self-esteem. No matter how much I’ve tried to unmask and stop these people-pleasing habits, I slip back into them continually. Even apologizing for getting emotional in public when I discovered the massive amount of life-improving medication bled insecurity. I had nothing to apologize for. But, it’s a [bad] habit I’ll continue to work on. I’ve already come a long way.

And, I can’t let you go before this fun yet often true Short of theirs on ADHD Planning. 😅

Five.

“Entropy makes things fall, but life ingeniously rigs the game so that when they do, they often fall into place.”

— John Tooby

My best,

Sara

     subscribe to | my free, sporadic newsletter

     get the | Content Strategy Planner

     support my work and | “buy me a coffee”

     visit the website | segwrites.com

P.S. I predominantly write from my personal experience as an Autistic person with ADHD, chronic illness, Anxiety, and more. Each of these factors can influence my individual experience overall, as well as my experience of each condition.

What I share is not a substitute for medical advice.

Self-identification of Autism (what many call “self-diagnosis”) is perfectly valid. If a personal Autistic experience I write about resonates deeply with you, consider these resources on Embrace Autism (starting with the Autism Quotient Test) as a first step. If professional assessment is important to you or your life has been impeded enough that you may need to qualify for Disability, you can print your results to bring to a diagnostician. (Having all those tests completed in advance saved me a lot of money!) Although there are many more diagnosticians available, here is a comprehensive list to get you started.

Lastly, some of my opinions may have changed since I first wrote the piece that lead you here.

Comment with any questions, and I’ll respond as soon as I can.

Leave a comment

Any link listed with an asterisk(*) behind it is an affiliate link. By using that link to purchase an item, you provide me with a small commission at no extra cost to you. Although small, these little income boosts help to keep Life and Other Stories going, as well as help fund in-the-works projects. Thank you for your contribution! I’m grateful.

To receive new and infrequent musings, the latest fiction and non-fiction narratives, updates, and "life nuggets”, subscribe here.

SIGN UP FOR FREE

I seriously don’t know what Past Sara was thinking when she scheduled so much during the kids’ school break(s). But, I admire her tenacity and attention to the kids’ education.

She’s forgiven.

Onward.

In an attempt to be less critical of myself and more mindful of my journey, I mentally split myself into four variations: Future Sara, Present Sara, Past Sara, and Way-in-the-Past Sara.

Future Sara has shit figured out. I’m banking on her.

Present Sara is doing worlds better than Past Sara, but one day, I recognize that Present Sara will become Past Sara.

But, Present Sara is doing her best, so she’s still on good terms with Future Sara (as far as I know).

Way-in-the-Past Sara is a dear thing who needed protection she didn’t have. So, Present Sara thinks of WitP Sara, also, as someone who did her best with the microscopic amount of information she had at the time. She is automatically forgiven for anything and everything.

Maybe this whole concept is silly, but as you probably well know, we evolve constantly. Holding way-in-the-past and even near-past versions of ourselves to the same standard we hold present and future variations is unproductive.

(But, Past Sara still gets some flak. What the hell was she thinking at times..?)

I don’t talk like this, to be clear. No real-life third-person referencing happens. But, in my mind, I absolutely split myself up. It helps me recover from past wrongs done to me and by me, and foolish mistakes I’ve made. It helps me offer myself forgiveness, and to focus on the future, even when the past is pounding at my subconscious’s door.

It’s a form of self-compassion. When I split myself up like this, it helps me view and treat myself as if I were a good friend I care for deeply, versus how I used to treat and view myself prior. Back when I had less compassion for the beautiful people in my life; self-variants included.

We got approved for the new apartment this week.

I’ve been hauling out and making arrangements for most of the kids’ Winter Break, in addition to the break-squeezed-in appointments my past self made.

But, Past Sara foolishly didn’t forecast the potential moving period. Granted, we didn’t expect to find a space that we’d want to secure immediately, especially not a couple of months before our actual lease ends.

Something I’ve discovered from friends who’ve never lived in a major city is that, when you find something in a major city, you have to act fast. Otherwise, it won’t be available for long. If something’s priced too high, sometimes it’ll sit for a while, then the owners/property managers get wise to why their unit or property isn’t “moving,” and they’ll lower the price. Other times, it doesn’t matter. When you have an influx of people moving here from more expensive cities, they may see $6,000 per month for a 1,200 square foot (111.48 m²), 2-bedroom apartment as a steal, and jump on it while you only bookmarked and monitored the space, waiting on a price-decrease that never came.

So, our moving deadline advanced drastically. We leapt on a larger, thankfully-not-$6,000-per-month unit after extensive research on the building, scouring past and present tenant reviews, and after just one viewing of the space in-person.

You’ve gotta do what you’ve gotta do. And, for the first time since we moved to Seattle, we did it swiftly. No regrets.

(Mind you, I’m a wee bit obsessed with monitoring the real estate market year-round. It’s another form of self-compassion as a renter in a fast-ish paced city: I want to know what to expect when lease renewal time comes. I want to be able to bring research and information to negotiate potentially ridiculous lease increases, and to not feel like a fool for arguing with people who have access to more market information that I can’t get ahold of without a real estate license. Time blindness,1 however, often finds a way to throw me off the long game, though. But that’s a story for a different day.)

I have a love-hate relationship with moving.

It leans more towards hate ever since an injury while bowling in 2019, which was later exacerbated by a pre-pandemic-lockdowns, early-2020 move.

Now, the act of moving is permanently painful and damaging to my chewing-gum-like tendons and ligaments.2 (To note: I wasn’t yet diagnosed with EDS when I went bowling. That came a few years later, and post-pandemic.)

I’m unsure what Past Sara would have done had I known, really.

I’ve always been stubborn. I push through pain because Way-in-the-Past Sara was led to believe she was a “wimp” and a “whiner” for speaking up about specific activities that caused severe pain—pain lasting for weeks and months, and sometimes longer.

I’ve learned that when [some] other people don’t suffer the same way you do, they’re often less likely to believe that you could suffer so much. They think you’re a liar, or you’re just trying to get out of something.

Anyhow, when I’d take care of myself or take things at a slower pace—trying to listen to my body—I’d be called “lazy” when I couldn’t keep up with my peers because of the pain. So, I learned to push through pain (emotional and physical), causing more and more damage; which I still ignored to avoid what I deemed to be more painful: name-calling and overall criticism from everywhere in my life.

Physical pain didn’t hold a candle to emotional. I can’t say things have changed much, though, honestly.

With nowhere safe, I forced myself to do things I shouldn’t to create a faux sense of security. Hollow, as it was.

All these push-throughs became a part of the mask I wear, still. But now I have enough self-respect to “burden” others over potentially getting stuck in a wheelchair because of continually pushing my body beyond its limits.

Present Sara is honest with doctors now, too.

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“Where’s your pain level at on a scale from one to ten,” my EDS-specializing podiatrist said before one of my every-6-weeks shockwave therapy treatments recently.

“An eight. I’ve been waiting for this since the week after the last treatment,” I said, chuckling. (The most I ever used to say was a “four”—even when I was dying from a seeping appendix—out of fear of being thought of as a “whiny woman.” Yes, I was afraid of what others would think of me, let alone what they may say. [I’m also someone who doesn’t care if people talk-shit behind my back. Being told to my face always hurt more, but that’s a story for a different day.])

I wasn’t ready for the pain of the last shockwave treatment. Go figure, when your pain level is heightened, the effects of shockwave therapy are significantly more painful too. Instead of trying to remain completely quiet and still like I usually do, I gave myself permission to not “suck it up” this past time. I had to pull my foot away from the shockwave gun several times due to the torment it caused, yet, my kind podiatrist said I’m still one of his only patients who can handle a level-10 from the gun.

(I thought, Should I “handle” it, though? Okay, next time I’ll ask for it to be reduced if I need to.)

I’m preparing myself mentally for the next injury during this move. My left foot’s posterior tibial tendon is already protesting, and I’ve only hauled out the kitchen, part of my closet, and our bathroom thus far.

There’s still so much left to do, even before the packing begins.

I finally connected with our preferred moving company, and our official move-date is December 17, just before my next shockwave therapy session. That way, the inevitable injury (likely: injuries, plural) ahead will have a mending treatment immediately following.

I want to make Future Sara proud. Her thoughts and feelings and experience matter to me.

I want to keep her out of a wheelchair, if I can. I want to prove to her that I care more about her and our future than I do about appeasing others, and looking like I won’t inconvenience anyone.

We all deserve thoughtfulness. We all deserve love. And if it takes splitting myself into four variations to continue giving each compassion, then so be it.

No regrets.

My best,

Sara

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Every year on Halloween night, my sleep is trash. I wake countless times throughout the dark hours, and I’m a mess the whole day following; often not realizing what the day represents until I have a full-on breakdown in the evening. Then, it dawns on me.

In years past, my brain would try to identify why I couldn’t sleep, as if it were any-old rough night: Oh, I had a piece of the kids' Halloween chocolate—that’s why I can’t sleep.

Anything apart from what it really is.

This Halloween night, my routine was thrown off after taking the kids out with friends and their kiddos. We also ate dinner later than usual, and I forgot to take my nighttime vitamins (which includes a sleep aid) until 10PM; almost two hours later than normal. I considered that it was too much stimulation on top of everything: Rowdy kids and a late-ish night out together, navigating through a sea of people all doing the same thing we were. And maybe that all did factor.

But none of it fully explained why I kept waking all throughout the night.

It didn’t register until I was readying the next morning:

Although it's been 18 years of this annual, mental rollercoaster, I’ve never slept well on the eve of my mother’s passing.

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For years, I told myself she was gone already, three days before her body got the memo. But that didn’t help settle my mind.

My body has never let me forget that night, in-and-out of consciousness, yet awoken by my father bursting in, panicked. “Sara, Sara!” He shook me out of my stupor. “She’s gone, Sara.” Sobbing, “She died at twelve-o-one.”

My dad only ever cried (in front of us) about Mom.

Dissociation firmly in place, I laid there. Numb. My consciousness floating above my blanket-tucked body; the emotions too much to bear.

I think I knew, going to bed that night 18 years ago, that it was the end. She had a do-not-resuscitate (DNR) order1 since she was diagnosed with inoperable lung cancer three and a half years earlier. She died and came back to life on the helipad after getting a medevac back to Moffitt Cancer Center in Tampa, Florida from a trip we took to Kentucky.

It took three days of no nourishment and no life support for her body to finally let go. A later-learned gift to those whose consciousness may still reside in its physical shell.

I’ve heard there’s a euphoric state before death for those at their end-of-life stage who opt to not or cannot eat or drink any longer.234 If it’s anything like when my appendix seeped for a week, when I hadn’t eaten or drank for the same amount of time as my mother, then indeed, it’s a gift. No pain, no suffering. Just the brain creating an oasis to escape to as death lies in wait.

Months before her cancer diagnosis, something jolted me out of my mental refuge. I woke, covered in sweat.

My oversized T-shirt clinging to me, I finally gained enough energy after a week in bed to roll myself off the side and onto the floor. I felt too weak to stand up, so I crawled; my limbs trembling beneath me. I hauled myself onto the couch in the sitting room and just laid there, staring up at the popcorn ceiling as the clung-on dust bits began to spin.

Eventually, my grandmother saw me on her way toward her bedroom from the living room. She said something like, “Oh! You’re finally up and around again.” She noted how pale my normally pink complexion appeared. She touched my head, damp but “like ice,” she’d said.

Dragging myself out and my grandmother noticing me may be the only reason I’m here to write this today. The surgeon who performed my appendectomy said if we’d waited much longer, I may have died from sepsis.

I pictured my mom doing the same thing, inserting her into my experience. Waking from her coma, pressing her nurse’s button but refusing to wait. She’d lower herself from the bed carefully—she was so frail and small, seemingly aged by the fight with cancer.

She’d crawl out to the nurses’ station, and she’d make them see her. They’d give her water and food, and she would feel better. Like her body beginning the process of dying throttled her cells into action. They’d fight the cancer, and she’d finally win with her life in tact.

But that didn’t happen. It was just something I saw in my mind’s eye each day of her coma, no matter how convincingly optimistic it was.

Except that Halloween night.

When I couldn’t sleep that night after our late visit with her unconscious body, I spoke to her, transmitting the words from my brain as if trying to communicate telepathically. It’s okay, Mom. We’re going to be okay. I’ll help Dad, Me-me, and Tommy. I’ll be there for Aunt Betsey, too. We’ll be all right. I promise. I love you. You can rest now. But after I consciously tried to sever some link I visualized with her, I thought, I can’t take this anymore, and cried myself to sleep.

It was three and a half years of worrying, rarely able to sleep, stressed that every morning I’d wake to her dead in her Hospice-placed hospital bed in the living room. Three and a half years of not wanting to go to school because I was afraid I’d miss her; worried I didn’t tell her I loved her enough, and that she would die alone.

I don’t blame myself for the timing of her death, but I won’t lie and say it wasn’t eerie. I fell asleep almost instantly after the hard cry on her last night. And awoke, what felt like moments later to the news, unable to fully process through a mental haze.

After my dad left my bedroom, frantic, bawling; moving onto my brother or my grandmother, I stared up at the popcorn ceiling, playing tug-of-war with my dissociated consciousness.

I pictured her in front of the screen door in her little yellow terrycloth, strapless onesie she wore on the weekends while cleaning. No bra, as she preferred, with the shorts riding up her round butt. She was full again, not well, but before the cancer gobbled her up. She had that bright smile on her face that I missed, easy to focus on, even with her oversized prescription glasses sliding to the tip of her perfect nose. Her dyed-blonde hair was pulled back in a tiny ponytail, frizzy baby hairs spilling out all over. She looked back at me, turning her smile into a grin and a wink, and she waved goodbye. Then, she opened the door and walked out.

I haven’t been able to visualize her so clearly since.

I slept late that morning. The house was quiet, absent the normal TV-in-every-room warring with each other. I could smell my grandmother’s burnt, recycled coffee, and someone’s toast filling the air—my mom’s go-to snack.

But my mind goes blank after that.

Every year around this time, I’ve written about this, but never released the words. Even through all my revelations, I wonder if carving my life open and sharing was never actually for others. I told myself it was, I’d say it was, but I’m unsure at this moment.

Several times throughout this journey, I’ve shared that writing is how I process things. That was always the first thought that came to mind. Honest, even though my conscience seemed to want to hide it.

I can express anger, frustration, and sometimes mental pain through the visual arts. I can control my energy level, and manipulate my emotions through listening to music and singing. But I’m not processing them. I’m emoting. I’m sharing, but not growing.

Expressing myself isn’t enough. Writing things out helps me process, and talking about the things I’ve written sets me free.

But, my body never lets me forget, even when I feel like I can finally move forward.

In most lovely moments with my kids, I think, I wish my mom were here, or She’s missed all of this. The latter being especially true during major milestone moments, like getting to meet Brian, getting married, and having each of my children.

All the times I wanted to call her, but if I did, a stranger would answer.

All the moments I needed her with me, but she couldn’t be there.

Most times when I kiss my husband and I feel safe and warm and loved, I wonder if my dad gave my mom that same feeling. I hold my kids, and I wonder if that blanket of love my mind drapes around them was an experience she had when she’d hug my brother and me.

I remember her coming home late from work, after my brother and I were already in bed. Sometimes she’d climb into mine and snuggle. She’d touch my face, her fingers and nails yellowed from cigarettes; their odor clinging to them, and her hair, and her clothes. But it didn’t matter because she made me feel loved.

And even though she didn’t have to go to work until nine, she’d leave before my brother and I got up for school. Still, she found a way to squeeze in just enough time with us to be the parent I’d turn to when my social mask would falter. She wouldn’t get home until sometimes nine in the evening or later, well after my brother and I were sent to bed. Still, she always found a way to make me feel important to her.

This year hit me almost as hard as the early anniversaries of her death had.

As of this year, she’s been gone for half my lifetime.

It’s hard to believe. It feels like my life only just started after she died. The life before that feels like a distorted, often dystopian fairy tale I’m not quite sure if it was all in my head or if it actually happened.5

I hugged my kids tighter this week. I kissed Brian more. I didn’t take simple risks (thanks to Brian, too), like taking the stairs with a connective tissue disorder,6 even though I was embarrassed about being a large-yet-mobile woman, choosing an elevator to go up or down a single floor.

I gave myself time this week.

I paced myself.

I asked for accommodations when I needed them.

Although she smoked cigarettes since she was a young teenager, I don’t think any of us thought she wouldn’t make it to her 50th birthday. But, unlike my mother, I plan to make it to and past mine. I plan to meet the loves of my kids’ lives if that’s something that will matter to them in adulthood. And be at their weddings if they decide to get married, or at their sides during childbirth if they choose to have children. (If they want me to be that close, of course.)

It was a tough week, but one of survival. We live on, always thinking of her fondly. We carry her with us, even when unconscious of it.

I’m not a religious person or one of “faith” in the biblical sense, and I don’t know and sometimes wonder if “souls” are even real. But I appreciate the idea that the people we love and care about can live on through us. It’s fuel, powering many days when I experience significant pain, or when I’m in a flare that my body may be better served by resting.

I may not be the best mom and spouse or person, but I’m doing my best, just like I’m sure my mom did too.

She loved me. She was loved. I made sure she knew every day that she was, just like I make sure my family knows every day that I love them.

Every day is a fucking gift.

And, next Halloween, I’ll remind myself of this when I can’t sleep.

Because at least if my brain doesn’t remember, I know my body never forgets.

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This was a hard essay to write, that’s for sure.

I got through it with mostly dry eyes, until it hit me that this year officially marked that half of my life was spent without my mother.

Then came the editing process….

For years, I coached myself that there are people worse-off than me because I didn’t think I had the right to be sad or angry or to “complain.” That I should never feel sorry for myself. That, when I’m unhappy or hurt or in pain or whatever-it-may-be, that someone in the world doesn’t have what I do or has it worse. Someone out there isn’t as lucky as I am. Someone out there always has it worse than me.

But that’s bullshit. There’s a difference between self-pity, and struggle, and grief. Comparison helps no one. Each person’s experience of life and love and loss are unique to them. And it’s big. And it’s important.

Your experience is important. What you feel is significant. You’re not over-exaggerating or “too much” or a “drama queen/king/llama.”

Your feelings and your emotions and experiences are valid—don’t believe anyone who tells you differently.

No one walks through life in your shoes (unless you donate them, but I don’t mean literally). You matter. Your experiences matter. Your story matters, whether you keep it for yourself, share it with someone you care about, or broadcast it to the world.

You’re loved. And you’ll be missed when you’re gone.

Don’t ever fucking forget that.

All my best,

Sara

     subscribe to | my free, sporadic newsletter

     get the | Content Strategy Planner

     support my work and | “buy me a coffee”

     visit the website | segwrites.com

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P.S. I predominantly write from my personal experience as an Autistic person with ADHD, chronic illness, Anxiety, and more. Each of these factors can influence my individual experience overall, as well as my experience of each condition.

What I share is not a substitute for medical advice.

Self-identification of Autism (what many call “self-diagnosis”) is perfectly valid. If a personal Autistic experience I write about resonates deeply with you, consider these resources on Embrace Autism (starting with the Autism Quotient Test) as a first step. If professional assessment is important to you or your life has been impeded enough that you may need to qualify for Disability, you can print your results to bring to a diagnostician. (Having all those tests completed in advance saved me a lot of money!) Although there are many more diagnosticians available, here is a comprehensive list to get you started.

Lastly, some of my opinions may have changed since I first wrote the piece that lead you here.

Comment with any questions, and I’ll respond as soon as I can.

Leave a comment

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“You took care of our children,” Brian said on Friday night after I cried to him over how poorly this week went.

I can’t lie comfortably in the figurative bed I made for myself, I said in far more words.

Over-extended, my “closing loops” daily action would seemingly continue to bite me on the ass for the next two months. Still, I don’t regret the overall habit built. I’m just glad I’m now working while scheduling endless appointments for myself and the family—it’s easier to make plans when you’re already doing the work.

(And, I’ll make sure to pace out all the scheduling better in the future.)

Over the tail-end of summer, scheduling was my only job. Not laying out the full picture ahead of me was the unwise, poorly managed facet. And this week’s activities, plus (finally) mapping the weeks ahead proved just how ill-prepared and ignorant I was as I proudly ticked bullet point after bullet point of tasks off my lists.

You took care of our children.

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Panicked, I wrote and wrote for 13 hours this past week, and none of it felt usable for today’s message. Panicked, I considered canceling my kids’ sleepover at our place this weekend so I could try to finish the other projects I didn’t touch, and attempt to eke out a halfway decent message.

Panicked, I broke down to Brian as he sat beside me, gushing about how badly I fucked things up for the rest of 2023.

Like I’m alone with three kids….

Like I can’t ask for help.

Like he didn’t just sit down to listen and to extend a hand.

“You took care of our children,” he said. “You went from a relaxing summer to full-speed with no personal recourse.”

I did. He’s right.

I made endless plans and scheduled countless appointments, trying to squeeze in as much as possible before the school year began. But when the time spent tackling those massive task lists bled over into the kids’ return to school, I hadn’t yet planned my projects out. I hadn’t worked in three months, but I just kept scheduling.

I realized that, although the act of Closing Loops every day is helpful and fulfilling, I didn’t forecast the fact that I would also be restarting this blog-newsletter. That I’d be working on projects outside these messages that are on a time-crunch due to the approaching year’s end, and putting them off would mean launching them a whole year later.

I agreed to activities and in-person therapies, kids’ sleepovers, and playdates without an overview of the little time I left myself for working out the kinks of starting work again. I seem to forget who I am, how I function, and what my limits are, every time I come back from a break….

You took care of our children.

But what I didn’t do until Brian pointed it out is acknowledge and appreciate the fact that I did, in fact, take care of our children on a day that normally remote-working Brian went to the office: His family care-tasks became mine for the day.

I took our youngest to an important doctor’s appointment—two, back-to-back, which were supposed to run for an hour and a half, and instead went for two and a half hours. Being a car-free family, I safely got her to the school, transferring twice via public transit (and eventually having to get a Lyft so she’d make it to school just before lunchtime).

Then, as I walked toward the train station inching on my lunchtime, my oldest texted, needing support. I huffed and sighed and stared up at the bright, clear sky. I considered telling her I’d talk to her when I got home, I need to eat, and I haven’t even sat down to work yet. But I went to her instead—another hour-long ordeal just getting there. I took time out with her, albeit jittery and stressed (and exacerbated by a man who sat next to us at lunch, who requires serious help. Having him talking to the people in his head, and pacing and laughing loudly, at random, didn’t help my heightened anxiety). But I listened to my kiddo as best I could, and came up with a conversation-game-plan for when Brian got home. And, after eating, my disposition shifted and I leaned in.

I apologized for my anxious behavior. “It’s okay, Mama. You were hangry.”

We laughed. I most definitely was.

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I took one of my kiddos to the store so she could get her favorite snacks for the sleepover-weekend ahead. And when we finally got home, it was time to get the youngest from her bus stop.

I took time to be playful and give her the love and attention she needed. She told me all about her day and her friends and her awesome teacher. Then, Middle got home, and they had lots to say about their day, even sharing a photo of their “nature art” created in class out of found-in-nature objects that the earth could reclaim.

I took care with and of our kids.

After groaning to Brian about how badly I messed things up, he found the light in my spiral. And it instantly calmed me.

I forget too often that I have as much if not more to offer at home than I do in the world, where my actions and effort may or may not create even a ripple.

Raising kids is a long-game process. It could take weeks or months, or even years to see the work you put in—the time, care, and attention you give them.

The world, more frequently, offers instant gratification to the work-obsessed like me. But email responses saying, “Thank you for this!” and “I feel so seen after reading today’s post!” from adults I appreciate but don’t know shouldn’t hold more value to me than my kids saying, “You’re the best mom ever,” or “Thank you for listening to me go on and on. I love you, Mom.”

I earned that, too. We did.

Heck, we are part of the reason our kids can even verbalize appreciation. Why our kids can say, “It’s okay, Mom/Dad. We know you tried your best.” I would’ve never said or even thought to say such a thing at 10, 11, and 14.

The nurturing of these incredible little human beings is just as important, if not more important, than my perception of independent, professional success.

This has been a problem I’ve bumped into repeatedly. One I can’t quite seem to shake completely. But, today, I can see it. It took help, but I finally see it now.

I was there for my kids. A step further: I take care of my health, not just for my quality of life, but because I lost my mom when I was just shy of 19 years old. And I swore I’d do whatever is in my power to not “leave” my family before their lives have barely even begun.

What started as a stressful day and nearly ended as a mental disaster, was saved by one sentence: You took care of our children.

I know I’ll have to remind myself (or Brian will) again and again, but I’m valuable whether I play with my kids all day, or publish a New York Times Bestseller. One doesn’t make me more valuable than the other, except one does for the future adults I’m co-raising. They’re the healthiest investment of time, energy, and love I’ve ever made.

I took care of my kids today. And it was worth it.

My best,

Sara

     subscribe to | my free, sporadic newsletter

     get the | Content Strategy Planner

     support my work and | “buy me a coffee”

     visit the website | segwrites.com

Journal Prompt

If you had all the time in the world, what would you focus on? What would make you feel the most successful or whole? What would you want to leave behind?

Explore, my friend.

P.S. I predominantly write from my personal experience as an Autistic person with ADHD, chronic illness, Anxiety, and more. Each of these factors can influence my individual experience overall, as well as my experience of each condition.

What I share is not a substitute for medical advice.

Self-identification of Autism (what many call “self-diagnosis”) is perfectly valid. If a personal Autistic experience I write about resonates deeply with you, consider these resources on Embrace Autism (starting with the Autism Quotient Test) as a first step. If professional assessment is important to you or your life has been impeded enough that you may need to qualify for Disability, you can print your results to bring to a diagnostician. (Having all those tests completed in advance saved me a lot of money!) Although there are many more diagnosticians available, here is a comprehensive list to get you started.

Lastly, some of my opinions may have changed since I first wrote the piece that lead you here.

Comment with any questions, and I’ll respond as soon as I can.

Leave a comment

To receive new and infrequent musings, the latest fiction and non-fiction narratives, updates, and "life nuggets”, subscribe here.

SIGN UP FOR FREE

Most all of the plans for summer were a wash, and it didn’t matter—I didn’t mind.

I felt bad because my kids were a bit disappointed with their use of summer-time. And our month-long house guest’s expectations for their time here apparently weren’t met either. (I bit off more than I could chew, certainly.)

But I enjoyed the summer, overall.

I spent most of it tinkering. I got rest. I started reading books again. I journaled. I got a new psychiatric nurse practitioner after mine retired early last year (and I just quit the meds… whoops).

I learned so much about myself, and now am a far less “masked” Autistic person in just three months of some actual self-focus and exploration. And I’m confident that taking the time to deep-read Unmasking Autism* helped my general sense of well-being, too.

I learned about “closing loops”—to finish or complete something in a way that leaves no outstanding issues or unanswered questions1—from a Mom-geared, minimalism-focused podcast episode (Apple podcast only, it seems) that transformed my life (no exaggeration!) in just the last month of summer. It’s amazing how much more your brain can do and tolerate when you don’t have niggling thoughts interrupting you constantly: Crap! I forgot to call the school about X! and Crap! I forgot to schedule the kids’ annual wellness exams… three months late…. Etc.

Those tasks are done. Check.

I also learned that I actually am the person someone new meets in-the-flesh.

I’m not the phony I thought I was. I’ve mostly always been me, only trying way too hard to be liked and accepted by the majority of people. (It’s a longer story I could delve into later.)

I needed this time. I needed it.

Prior, most days felt like I was just spinning my wheels. It felt like I had no purpose, no focus.

And, while reading my now dusted off copy of Unmasking Autism, I’m slowly learning to overcome that people-pleasing, deeply ingrained, artificial facet of my self-created public persona. I acted like my life depended on it—which I won’t discount for other Autists, but it’s not 100% necessary for me. Masking amplifies my anxiety, and robs me of valuable time thinking and worrying about things that don’t matter.

In Unmasking Autism, author Dr. Devon Price wrote, “But when we look at time as a series of cycles or spirals with goals that are ever-shifting, we can recognize that learning and reflection we put into an aborted project (or even into masking) often pays off, just not in the way we expected. Every disappointment or failure teaches us something about what we want, and what is best for us.”

I’ve found this to be true.

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Although I created the mask to protect myself from scrutiny and rejection from my peers, it served its purpose. I can blend in. I can attract good people I actually enjoy being around. But I can also still fiddle with a fidget toy when I read, unconsciously sway back and forth in a long line to self-soothe, and laugh and talk too loud and “too much” because that’s just who and how I am. If someone has a problem with it, they can speak up. It’s not my job to try to make everyone else comfortable when they’re around me. No one’s paying me to do so, yet I’ve certainly put other people’s comfort above my own my entire conscious life as if it were a paid gig.

Every time I open Unmasking Autism for an absorption-paced, 30-minute reading session, it changes my life in even the most subtle of ways. (Side note: It’s a book I recommend to all people—not just Autists.)

Although under-utilized, I’m trying to view the time taken to plan things out as gifts to myself.

In-the-moment planning offers me a sense of control in an out-of-control existence.

I can map out what I want to do, what I need to do, and how I should or can do it—little suggestions to my future self. It satisfies the more ordered, Autistic side of me.

However, the ADHD side often sees said plan later—and whatever wasn’t a previously created habitual task—and it tuts at and casts off the day’s non-habitual task list. So, over the summer, I practiced building new habits to counter the more defiant, distractible part of me.

Should I have written more? Maybe. But now I’m stronger and sturdier, and in a more stable place to write from.

Now, each day I read for at least 30 minutes. A small feat, but going from reading two to three books a month to being unable to finish a single book since my first COVID infection in May 2022, this is a major achievement for me.

I now include time every weekday plus some time on Sundays to Close Loops, too.

About three and a half weeks before the school year began, I sat myself down and made several lists of:

• Family Tasks

• Personal Tasks

• Professional Tasks

• Household Tasks

• [Pre-Moving Tasks]

• [Substack] Project Tasks

…and so on, and filled up the pages of my little Supernote e-ink writing tablet.

Each day I look at what remains of these evergreen lists, and I decide: What’s one important task I can knock out in 30 minutes or less?

Mind you, these are all tasks I’d put off for weeks, months, and maybe even a year or longer. Tasks that I shamed myself over every time they popped into my head and I told myself I really need to do that, but still didn’t get around to it.

Now, I do. Every day it’s needed.

One of my kids who shows the most signs of Ehlers-Danlos Syndrome2—a connective tissue disorder—and whose life is negatively affected by it now has an orthopedic assessment scheduled next month. I finally found a new (in-network) children’s dentist and got the kids in before their twice-annual dental cleaning appointments were due.

One of my kids who struggles with verbal communication and processing wanted to see a therapist. We’ve tried in the past, but never found the right fit. However, after discovering alternative therapies like Art Therapy,3 and a local-ish center that works almost exclusively with neurodivergent youth, she’s now starting therapy with an actually Autism-friendly LMFT in early October.

The list of completed appointments scheduled and kept already, and other accomplishments goes on and on.

I feel great about myself. I feel whole and productive, useful, needed, and helpful.

This summer’s occurrences weren’t “planned,” but they became realities when I gave myself the space to just be.

It’s a space of privilege, I understand. One I’m grateful for, but one that’s also left me with a wake of other surfaced struggles to contend with. Like, lesser funds, for one, and very little in-person social time.

I left all the groups I was in due to social overwhelm, but added “socialize more” to my list of personal tasks. So, recently I signed up for some Meetups to get my ass out into the world again, socializing with other activity-enjoying or neurodivergent adults in real life.

With all that, the prospect of coming back to these posts offered plenty of confusion and indecision.

Writing is a great love of mine, but I questioned everything over the summer.

Talking to a designer acquaintance and a fellow writer friend, I confessed separately that I’m not sure if I want to continue writing—particularly writing these posts. At the time, I didn’t realize that it wasn’t because I don’t love writing to you, it’s because I forgot why I wanted to do this in the first place.

While completing the first exercise in Unmasking Autism, the author utilized a Values-Based Integration exercise4 from fellow Autistic writer, Heather R. Morgan. In it, they ask us to think of five moments in life when you felt fully alive, and to think specifically about why the moment(s) stuck with you.

One moment was with my mom; one was with Brian; one was actually a huge moment of revelation about my last day as a Mary Kay consultant; the last one was when I discovered myself and our family were all Autistic, with the later validation and official confirmation by diagnosticians; but the fourth was when I was severely ill and immobilized by undiagnosed Celiac Disease.5 That’s when my obsession with bullet journaling6 started, soon spilling over into (Morning Pages)7 journaling, then into, I should document this health journey to help other people who may be experiencing similar struggles.

Writing and sharing gave and gives me purpose beyond what so many people have told me simply being a mother offers them, but “wasn’t enough” for me.

I feel valuable. And my writing proves that I can communicate and do communicate well with practice and diligence. (Except for maybe my excessive use of “I”s….)

Although I feel the most when I sing, and express myself most in an outwardly creative way through the visual arts, the written word is my most accessible tool of self-expression. Original words and original thoughts, shared my way.

I’m not the best at it, but it breathes life into me. It taps into what felt like previously unrealized compassion and a general understanding of life that I felt unable to obtain prior.

Writing helps me connect, share, and grow.

Writing fulfills me.

So, here I am. Back! Finally.

I’m grateful for you and for your patience. I hope you had a great summer! Thanks for being here.

All my best,

Sara

     subscribe to | my free, sporadic newsletter

     get the | Content Strategy Planner

     support my work and | “buy me a coffee”

     visit the website | segwrites.com

P.S. I predominantly write from my personal experience as an Autistic person with ADHD, chronic illness, Anxiety, and more. Each of these factors can influence my individual experience overall, as well as my experience of each condition.

What I share is not a substitute for medical advice.

Self-identification of Autism (what many call “self-diagnosis”) is perfectly valid. If a personal Autistic experience I write about resonates deeply with you, consider these resources on Embrace Autism (starting with the Autism Quotient Test) as a first step. If professional assessment is important to you or your life has been impeded enough that you may need to qualify for Disability, you can print your results to bring to a diagnostician. (Having all those tests completed in advance saved me a lot of money!) Although there are many more diagnosticians available, here is a comprehensive list to get you started.

Lastly, some of my opinions may have changed since I first wrote the piece that lead you here.

Comment with any questions, and I’ll respond as soon as I can.

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Most everyone I care about has left Seattle.

Late last year, a local friend moved about an hour outside the city. My sister-in-law is moving three hours away today. And my closest writer-friend is in her ninth month of a two-year digital nomad journey, and revealed she and her spouse (likely) won’t end up back in Seattle afterward.

Even outside of just my former local friends, I’ve heard that the city is “too expensive” and “the homelessness crisis has gotten too bad.” I’ve heard that “it’s not the city I moved to anymore,” and so on.

And although I get it, it’s hard to imagine leaving this place.

Moving to Seattle and what the city and county offer literally saved my life.

I don’t feel like I owe the city anything. But understanding what it’s provided me, knowing that nowhere else in the world may ever be able to be “home” as much as this city due to it and its resources being able to manage health issues, its mild climate (for said health issues), and the fact that it’s actually the least expensive place to manage just those factors definitely helps me find all the good in it, and more easily dismiss the (perceived) bad.

I think I understand the “Seattle Freeze” better now, though.

Why bother spending time nurturing friendships when they don’t stay anyway.

It’s a transient city. It’s got a hot tech market, which means lots of strategizing tech peeps advancing their careers by company-hopping frequently. (This current tech hiring freeze1 won’t last forever.)

My Baby Boomer dad criticizes my Millennial generation because “none of [us] commit to an employer.” I countered that employers should treat and pay their employees better, then maybe turnover won’t be so high. But that may only be a fraction of the job-market reality.

If you’re unfamiliar, Seattle is known for being an “unfriendly” city. Locals seem to not bother making friends with transplants because nobody stays anyway.

But to verify my hand-me-down information, I looked it up and the Urban Dictionary2 describes the Seattle Freeze as:

…a social phenomenon commonly found in the Seattle area. It concludes the majority of Seattle residents as snobby, cold, unfriendly people with a fake-polite exterior. Many people move here with the impression that Seattleites are friendly and laid-back, but upon moving quickly realize how superficial and forced that “friendly” exterior really is. There is a lot of debate as to where this social dysfunction comes from. Some say it's the nerdy tech population, some say it's the Scandinavian culture, some say it's the weather, and some even say it’s the transplants’ fault.

Based on my interactions on the Seattle subreddits, I would agree with this definition. Otherwise, after living here for 5 years as of next week, it feels more like the real reason behind the Seattle Freeze is that the city’s transient nature predominantly makes building relationships a “waste of time.”

Why invest time when they’re going to leave, anyway?

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I’ve supplemented close, in-person friendships by working from the same coffee shops and eating at the same restaurants during the workday, building rapport with staff and regulars, and with groups like my Meetup writers group. I like all the people who go, and we happily exchange creative energy. It’s a fine adjunct for me. For now.

I’ve contemplated trying to branch off with a member or two of the group, but I realized something about myself that makes me a part of “the problem.”

I have a set idea of what the ideal in-person friendship looks like, and now I’ve had that:

• We lived in the same region of the city (not far from each other, too).

• We shared and talked often.

• We both had flexible schedules.

• She’s communicatively responsive unless she’s super-busy. But even then, when she responds, she responds thoughtfully every time.

• She’d meet me where I wanted to go. (Generally health-related and it was more about “where I could safely go.”)

• She’d eat where I could eat. (100% necessary for me, but it was a challenge for her being vegan-at-home, vegetarian-whilst-outside-of-the-home for flexibility’s sake.)

• And she’s always thoughtful, respectful, and even a little reserved (which is a type of person I seem to attract, probably because I can’t shut up. Plus, there’s some childhood trauma wrapped in there).

I’m inflexible.

Yes, most of my inflexibility is due to health reasons and being Autistic. But, I can imagine it’s difficult being friends with me, let alone being a local friend to me.

This friend and I met in a writers group about a year-and-change before the pandemic lockdowns of 2020. She initiated a hangout outside of the group.

I liked her basically as soon as she started coming to the group; maybe two or three months after I started. In addition to having some of the greatest hats, she was (and still is, even afar!) the ideal friendship companion for me. But, at the time, I didn’t even consider trying to make friends with anyone.

I was overwhelmed with the entirely new life after our cross-country move roughly 14 months prior, still. The last thing on my mind was add something else to your mental load: Make a friend!, even though that was the main reason why Brian encouraged me to go to the writers group in the first place.

She opened up my world to actually wanting to make friends, and to be a friend to others.

She’s the reason I reached back out to the people I no longer spoke to from my past; friends that literally changed my life for the better, but I let them go for various reasons. One ridiculous reason being that long-distance friendships were "too much for me" after I had kids—seemingly too much even when we lived maybe an hour to an hour and a half from each other at the time…. That’s what I told myself, at least.

What I didn't have the understanding of then was that if I don’t see someone in-person regularly, I’m not thinking about them. Issues with object permanence3 don’t help. (Or, as someone in an Autism forum wrote: a “person-permanence” problem.) As another commenter wrote in that thread, “The longer I have no contact with much of anyone, the further removed they become to me in my own mind.” This is how relationships work for me, too.

In my digital calendar, I have monthly reminders to check in with people. This is the main way I remember to keep relationships alive, it seems. Otherwise, I’m completely dependent on the other person to carry at least 50% of the relationship. But, really, the bulk of it….

I was a social outcast growing up. Then, around 19, it was like I finally became socially acceptable. (Well, it was right around the time I stopped covering my body with over-sized hoodies. Then, all of a sudden, I had a line of male “friends” wanting to “hang out.” But I also molded my personality into something more generally acceptable around this time, too.)4

My husband’s friends whom I met in Florida in my early twenties were, truly, the first and only real friends I’d ever had. Until this lovely group, I was only as valuable to my “friends” as what I could provide for them.

Heck, all the friends I have essentially came to me. I matched with my husband’s friend on a dating app. He initiated contact, if I recall correctly. On the morning of our first date, I found out I was pregnant. I was a mess.

His other friend came later on to pick him up, and she and I hit it off. She invited me to hang out with them in Tampa the next weekend, and that’s when I met Brian; my future husband. (The only person I had to initiate almost everything with.)

Obviously, I met my sister-in-law through Brian, but she initiated friendship, too.

And this Seattle writer-friend with great hats initiated companionship with me, also.

She unknowingly taught me that solid friendships with enjoyable people are highly desirable, after all. So, I opened myself up to people more; I “put myself out there.”

Then, the pandemic happened and we all experienced social setbacks.

I admit: I feel miffed. Finally, I became genuinely social—no longer needing to “fake it” and be performative because I thought that’s just what I had to do to meet people. And I was excited to replicate this “ideal friendship.” But then the pandemic happened, and two years of that time I could’ve had with my friend(s) while they were here was taken from us.

These relationships will never be the way they were when I fell in love with them. But I guess that’s how some people feel about the city.

I think I get it now. It’s just hard for me to see it from their perspectives as, at least my experience in Florida/the South was where I believe the true “fake-nice” people are. Here, it’s more like they’re just not pretending. Sometimes we’re able to be nice and friendly, and other days we just don’t fake it. People here seem more authentic to me, but everyone has their own experiences and perspectives.

One could say that these kind of relationship shifts are evolutionary, but that’s not exactly what I mean.

In person, there’s a kind of magic to relationships. For me, at least.

I’m always an open book, but an emotional distance grows along with the increased physical separation, it seems. I already consider one of these lovely people lost—I tried everything to make it work, but it was like “pulling teeth” to prompt any form of response from her. So, I backed off. She’ll text me when or if she wants a the friendship.

But I don’t want to lose the others. Yet, I’m too tired and often feel too broken (chronic illness, etc.) to try again with someone new.

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I visited friends and family in Florida in December 2021.

On the last day of my trip, I stayed overnight with one friend there. Our group of friends hung out that evening, and I stayed over in her guest bedroom; now a nursery. We talked most of the day before my evening flight out, and just as I readied to depart to the airport, she shared a deeply personal piece of her life that I had no idea she was going through. I felt so close to her at that moment. My eyes welled. I didn’t want to leave anymore; I wanted to be there for her.

I knew we’d never get that level of intimacy again unless I visited one day in the future—something I said I’d never do again for health and personal reasons. (Not against her or the people I love there, but against Florida and its inhospitable-to-me climate and healthcare system. I can really only travel to places that can handle my conditions, and understand how they interact with and effect each other.)

Now, her baby is a year old. I remember what new parenthood was like: my friend and her family likely won’t travel for a long while—especially not a six-hour direct flight that generally doesn’t arrive here until 10PM to 3AM Eastern Time. It would be on me to visit them.

Distance-strained relationships are interesting, though. I’ve lost someone I can sit across from, touch, and exist in the same space with. But I always seem to lose the piece of them that excite me most when they leave.

Texts and phone calls and video chats aren’t the same. There’s a superficial, almost tedious nature to the upkeep to some physically distanced relationships.

But these people are worth it to me to do the whole basic text check-ins rigamarole, and the surface-level conversations.

Maybe I’m the only fool unafraid to “put things in writing”—things that could “burn me” later—I don’t think about the potential consequences of because I trust my friend. And I’m an open book, as I said.

Until we see each other in person, there seems to be little to no two-sided, deep conversations anymore. The types of conversation which offer that deep connection I need from other humans.

I can ask the barista or cashier how their day is going, but I hope for something rapt and real from friends.

I live and breathe for “realness.”

Most of the time, I feel like I walk around naked. When someone shares with me, they strip a layer of clothing from their body, and we stand as a united front in rawness. I feel so close to them, yet, the physical distance fractures that closeness, it seems. Soon, we’re back to superficial ‘How are you doing?’s and me trying to condense my world into a couple of (lengthy) text messages; yet often receiving vagueness from the other end.

I’m an island. And I didn’t realize how lonely that can be until others move away or move on with their lives. Now, I truly realize how much their friendship and physical presence positively altered my life.

But, I’m here. On my island, in the heart of a U.S. metropolis that everyone seems to vacate, yet loves to visit.

I survive.

I love this city, and I don’t know if anyone’s negative thoughts about it will change that. I like what it’s becoming. I couldn’t be here if it didn’t have all the accommodations it does now (sorry, Natives).

I’ve never felt so safe in a place before. I feel safer letting my older kids go out by themselves more here than if we still lived in the rural suburbs of Florida.

But, saying I love it here is easier for me to say being the wife of a software engineer—a profession that flooded the city and seemingly stripped Seattle of being a creative melting pot, morphing it into a tech epicenter.

I’m still a creative, but I benefit from the tech-professional climate.

Residents complain about the “ugly” new buildings and their NIMBY5 urban suburbs being overrun by multifamily residences to house the ever-growing population.

But I love it all. They’re all pieces of history and transformation and growth.

It’s beautiful, eclectic, and interesting. And best of all, I can live here.

I need access to multi-conditions-knowledgeable medical care, a gentle climate for quality of life purposes; and I want access to dining options suitable for my health, and for occasional mobility difficulties from EDS.6

I want to not have to own a vehicle again. I want to reside within a 15-minute walk of basically anything I could need or want.

I want a city buzzing with life.

I have everything here, except a local friend now.

Maybe living here comes at the sacrifice of in-person friendships. But I won’t give up this soon; I won’t be tired and overwhelmed forever (I hope).

But I’ll miss all these beautiful, in-person-relationship people who made and make my life better. I’ll learn to cope with the distance and the shifts in relationship dynamics.

They’re worth it to me.

But, just like Seattle’s ever-changing horizon line, I can love things as they morph.

And I’ll love these wonderful people, no matter where they end up.

My best,

Sara

     subscribe to | my free, sporadic newsletter

     get the | Content Strategy Planner

     support my work and | “buy me a coffee”

     visit the website | segwrites.com

P.S. I predominantly write from my personal experience as an Autistic person with ADHD, chronic illness, Anxiety, and more. Each of these factors can influence my individual experience overall, as well as my experience of each condition.

What I share is not a substitute for medical advice.

Self-identification of Autism (what many call “self-diagnosis”) is perfectly valid. If a personal Autistic experience I write about resonates deeply with you, consider these resources on Embrace Autism (starting with the Autism Quotient Test) as a first step. If professional assessment is important to you or your life has been impeded enough that you may need to qualify for Disability, you can print your results to bring to a diagnostician. (Having all those tests completed in advance saved me a lot of money!) Although there are many more diagnosticians available, here is a comprehensive list to get you started.

Lastly, some of my opinions may have changed since I first wrote the piece that lead you here.

Comment with any questions, and I’ll respond as soon as I can.

Leave a comment

To receive new and infrequent musings, the latest fiction and non-fiction narratives, updates, and "life nuggets”, subscribe here.

SIGN UP FOR FREE

Well, I survived anesthesia! Woohoo!

I mean, it’s roughly one in 200,000 people who don’t wake up after anesthesia.1 And this being my 12th surgery and 15th anesthesia, I figured I’d pull through.

Still, waking up after is always a relief. Except for the whole getting woken up thing…. I’m incredibly annoyed when I hear, “Sara, it’s time to wake up now. Come on, Sara. I know you’re sleepy, but you need to wake up.”

It’s like being a teenager all over again. I want to say, “Shut up! Just let me finish this dream!”

But I never get to.

Maybe that’s a good thing.

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Currently, rest is my priority.

I told my therapist the week before surgery that I don’t mind procedures. They force me to take a break. They excuse my brain from feeling guilt over watching movies and TV shows and YouTube all day because healing is my only job.

(Yes, I have to consider rest and healing a job to do it. Yes, that’s problematic.)

They also provide me with a break from responsibilities, some reprieve and alone-time while waiting for a procedure. And some direct attention focused on my well-being, too.

I wouldn’t like it long-term, but having nurses check in on me and seemingly prioritize my care is something I’m so grateful for. And I convey my appreciation for the work nurses do. It feels like a positive exchange all around.

But, even before surgery, I started incorporating rest more in my day-to-day to avoid Autistic meltdowns (e.g., intense, uncontrollable responses to emotional or sensory triggers. Meltdowns are caused by a central nervous system overload in Autistic people. Autistic meltdown states are one of the most dramatic and aversive parts of Autism). Like the one I had last week.

I pushed and pushed, and my body and brain pushed back. And I lost. So did the people who love me who had to witness and experience it, too.

How do you prioritize rest?

Some readers have responded to previous posts saying they schedule breaks throughout the day.

The occupational therapist of one of my kiddos suggested I don’t bypass Focus (Emphasis — iOS) timer app’s breaks because those brief moments away from the task can make a huge, positive impact on not only my ability to focus during working sessions, but also to offer myself more calm in between.

She’s not a writer, though. And when you’re on a roll (and you’re not neglecting feeding yourself, overall bodily movement, or sleep), I don’t see why rolling with it is such a bad thing.

Although, that just reveals how stubborn I am….

(The OT also said that using your non-dominant hand more often improves memory.2 I’m looking forward to that, too, while my dominant hand heals.)

Other ways I’ll prioritize rest are by extending writing session times to avoid skipping breaks being one way I’ll incorporate rest more. Meaning, based on my current workflow, instead of 30-minute writing sessions where I skip the 5-minute break and just roll into another session, I’ll re-set the app to do an hour-long work session with no-skip 10-minute breaks in between.

Also, stopping when the body tells us it’s had enough is another important practice. My brain is the one I have to worry about. My body has always been the voice of reason — the “guiding light” I ignore because my brain can be incredibly narrow-minded when it comes to progress. I mean, it is hard to reason “take more breaks to get more work done,” amiright?

I also want to utilize 20 to 30-minute naps when needed, too. Today’s a nap-necessary sort of day. I’m exhausted. Sure, lying down isn’t the most comfortable thing right now; I have to keep my arm above my heart for almost a month, but the rest of me will benefit from a sprawl on the bed, at least. And that’s what matters.

So, how do you rest? How will you?

I’m usually one of those post-menopausal women who get worsening brain fog3 post-anesthesia.4 It sucks (hence all the guilt-free screen time I allow myself after surgery. Now). But I knew what to expect this time, and I planned to give myself grace regardless.

I learned after COVID infection and two anesthesias within a 6-month span, how inflamed the brain gets after,56 and how that affects my ability to think and process. It sucks that it took almost 5 months to recover from that period of brain fog last year. Then, as soon as it lightens, I had a mast-cell flare and I’m right back to being inflamed and foggy. Then, as soon as I begin getting out of that, I had surgery….

However, this is the first post-menopausal, post-anesthesia experience where I've had zero (additional) brain fog after. I'd say there's definitely something to practicing with my non-dominant hand pre-surgery that might've lead to this more positive post-operative experience.

Anyhow, by prioritizing rest, I’m extending to myself a healthy dose of patience, healing, and kindness. And that’s the most I should be doing right now.

So, I'll give you a rest today too. In lieu of a long post this week, here are 10 things I thought you might find interesting or enjoyable in your own rest or downtime:

1. Watching The White Lotus on HBO Max. Although “late” to it, Brian and I binged its two seasons in three weeks. I find it more and more interesting in hindsight. It’s brilliantly written — seriously, the effortless social commentary and ability to infuse multiple belief and experiences in a fair, organic, and clever way; allowing us as viewers to gain perspective on different points of view has got the show still in my mental forefront, even weeks later. It’s well-acted, the settings are sublime, the cinematography is incredible (just chill on the water lapping the camera shots, yo); the characters are complex, and it shows that even (some) terrible humans have good sides or soft spots.
   

2. Watching Shrinking on Apple TV+. I’m enjoying it. It wasn’t the hilarious comedy I thought it would be, but the dry-humor bits are fun, and I like the “humanness” of the show. Also, seeing Harrison Ford as a layered, funny, interesting older dude is a nice change of pace.
   

3. Absolutely loving the iWeigh podcast by Jameela Jamil. “A podcast against shame” that covers various topics. Frequent ones are on self-love, self-care, body positivity, and overcoming trauma, mis- and disinformation, and more. I highly recommend it for all women and gender non-conforming folks. But also for men from any background who respect women and ally with us.
   

4. Also, watching Abbott Elementary on HBO Max with the family. It’s cute.
   

5. (Still) reading Unmasking Autism by Devon Price. I’m hopeful I’ll finish this during my recovery time (although it’s really difficult to hold open paper books right now). But it is exactly what the title says: a thoughtful guide to dropping the neurotypical camouflage for improved mental and physical health, and for elevated quality of life as Autistic people.
   

6. I’m obsessed with dermatologist Dr. Dray’s YouTube Shorts and overall channel, as well.
   

7. Another winning podcast is Struggle Care by licensed therapist KC Davis. She’s a TikTok sensation for all the right reasons, and her podcast covers self-care, “mental health, care tasks, and more.”
   

8. Okay, last show recc: Finally, Ted Lasso is back on Apple TV+. Just two episodes in so far, but we’re enjoying it. (Although I think 3 seasons is a good stopping point for it.)
   

9. Reading Bomb Shelter: Love, Time, and Other Explosives, an essay collection by Mary Laura Philpott. The Washington Post said of the book, “A beautifully wrought ode to life… a precious gift to the world.” This is my chaser to the heavier content I’m already reading. It’s funny and interesting, with plenty of life-takeaways to absorb along the way.

I appreciate you.

My best,

Sara

     subscribe to | my free, sporadic newsletter

     get the | Content Strategy Planner

     support my work and | “buy me a coffee”

     visit the website | segwrites.com

P.S. I predominantly write from my personal experience as an Autistic person with ADHD, chronic illness, Anxiety, and more. Each of these factors can influence my individual experience overall, as well as my experience of each condition.

What I share is not a substitute for medical advice.

Self-identification of Autism (what many call “self-diagnosis”) is perfectly valid. If a personal Autistic experience I write about resonates deeply with you, consider these resources on Embrace Autism (starting with the Autism Quotient Test) as a first step. If professional assessment is important to you or your life has been impeded enough that you may need to qualify for Disability, you can print your results to bring to a diagnostician. (Having all those tests completed in advance saved me a lot of money!) Although there are many more diagnosticians available, here is a comprehensive list to get you started.

Lastly, some of my opinions may have changed since I first wrote the piece that lead you here.

Comment with any questions, and I’ll respond as soon as I can.

Leave a comment

To receive new and infrequent musings, the latest fiction and non-fiction narratives, updates, and "life nuggets”, subscribe here.

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I’m having surgery on my dominant hand and arm tomorrow. I’m nervous, but also excited.

The nervousness is because it’s on my dominant hand. And because our insurance company and the literal best surgical center I’ve ever been to are “in talks” right now. The final decision on whether they can work out their compensation agreement is at the end of March (2023).

I feel a little “rushed” by this. But, the surgeon who “wrote the book” on my various procedures with my health conditions works primarily with this surgical center. Plus, it’s likely he’ll retire later this year. So, if I want “the person” to do my surgery, I needed to act now.

I’m to a point where I struggle to sustain hand-writing anyway. I’m typing this, and my left hand keeps going numb — what my right hand used to do before the same procedures were done.

It’s not any old numbness. It’s a deep pain — like my hand is in a noose and some sadistic asshole won’t stop pulling it tighter.

But I’m scared of the forced downtime. I’m scared of the time away from writing.

Most people who I’ve told this to try to quell my fear by saying, “You can dictate (to text) for a while until you recover.”

Normally I’d say that I can’t speak like I write, but that’s often met with, “You speak great!” Or, met with confusion.

I’ve tried to explain that my brain locks up with verbalization. And I can’t even complete a single sentence, let alone dictate coherent paragraphs and full pages.

Sometimes I would share the fact that I can’t be creative when I speak. There are too many processes required for speech, and I can’t verbalize what my fingers can channel with a pen or a keyboard. (See video: Autism and Verbal Communication Challenges: When Speaking is Difficult by Autism From The Inside.)

I omit that most everything (small-talk, namely) that I verbalize is either so rehearsed there’s no way I could muck it up. Or, I’m so learned on a subject that it’s second nature to discuss.

Most people don't want to know that the person they're conversing with practiced everything they say. So, I don’t tell them unless it’s necessary to.

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My biggest fear, though, is that I’ll have to relearn how to write by hand again — an activity that’s paramount to my mental health and creative clarity.

It may seem simple, but there’s something to not having any other distractions; nothing fragmenting my behavior. Just me, a pen, and the page, working things out.

But I remind myself that this surgery needs to get done. My sleep will improve. My quality of life will improve. My ability to work and even leisure will improve.

Yet, with something like 11 surgeries and 14 total anesthesias before the age of 36, I’m tired. And I frigging hope this might be the last surgery I have to have.…

I gotta throw Brian under the bus first.

He used to tease that I may have a low pain tolerance due to my reactions over my “numb” hands. The surgeon disagreed. Even as a man, he said his male patients run to him at the onset of problems.

My problems are over 20 years old, from back when I used to body-build and carry engine blocks with my brother (poor guy has spinal stenosis at 34, which means I’m the lucky one). Having Ehlers-Danlos Syndrome (EDS) doesn’t help either.1

The surgeon said that he’s been working with EDS patients from the beginning of his private practice starting 17 years ago. And he'd never seen such severe damage as mine was. He said, “I have no idea how you were able to use your hand at all.”

The surgeon readily accepts that Assigned-Female-At-Birth folks are tougher than their male counterparts, thankyouverymuch. (Haha)

He also acknowledges women’s plight with the medical industrial complex. And he acknowledges the bullshit fat patients have to contend with, and how often we die due to medical negligence and ignorance.2

“Failure or delay in getting a consult occurred 7 percent more frequently when treating patients with obesity.”

And, “An increased frequency of serious injuries appeared to be a trend in this [obesity] study: The frequency of patient deaths was 18 percent higher for patients with obesity.”

Women, regardless of assigned gender at birth, are often treated as hysterical, and are actively taken less seriously than men.3

According to the BBC,4 “Women are less likely to have their pain treated, their symptoms taken seriously or to be given a diagnosis than men. Their bodies, and the conditions that primarily affect them, are less likely to have been studied in clinical trials (which make effective treatments difficult to find).”

Heck, male birth control trials were a great example of this issue. Everything stopped when a man had a few relatively minor side effects.5 Meanwhile, the side effects of female-designed birth control don’t really matter, do they? Who cares! It’s for women! And it’s our full responsibility as women to not get pregnant! (Sarcasm) Even though we can’t control when and how a man ejaculates.

God forbid men “ejaculate responsibly”….

Seriously, though. A few of the side effects women endure to control their sexual reproduction and often their reproductive health range from “inter-menstrual spotting, nausea, breast tenderness, headaches and migraine, weight gain,” and “heavy or painful periods, endometriosis, and menopause symptoms.” Even down to severe effects such as “breast and ovarian cancers.”6

But a couple of men can’t “get it up” and it’s STOP EVERYTHING!!! NO MORE!!!!!!!

That’s some bullshit.

I know there's more to it, but it's still frustrating.

Needless to say, I can’t wait for full control, full function, and no more excruciating pain in my hand again. (Quite the transition there, huh?)

But, it’s my dominant side… And I’m beyond reliant on my dominant hand.

For the past couple of months, I’ve practiced using my right hand for more tasks. Hand-writing a little = terrible. Wiping my butt (sorry, but you try wiping with your opposite hand, especially with an ample derrière. But, yeah): not an easy experience. I mean, I couldn’t even get pants on for the first almost-month post-op on my right arm.

But, I’m hopeful. I know this surgery will improve my quality of life.

And after the period of recovery, I’m going to relearn how to write by hand again. I know it’ll hurt for a few months, but I’ll get there.

Wish me luck! I’m sure everything will be fine. But some well-wishes can’t hurt, right? 😉

My best,

Sara

     subscribe to | my free, sporadic newsletter

     get the | Content Strategy Planner

     support my work and | “buy me a coffee”

     visit the website | segwrites.com

P.S. I predominantly write from my personal experience as an Autistic person with ADHD, chronic illness, Anxiety, and more. Each of these factors can influence my individual experience overall, as well as my experience of each condition.

What I share is not a substitute for medical advice.

Self-identification of Autism (what many call “self-diagnosis”) is perfectly valid. If a personal Autistic experience I write about resonates deeply with you, consider these resources on Embrace Autism (starting with the Autism Quotient Test) as a first step. If professional assessment is important to you or your life has been impeded enough that you may need to qualify for Disability, you can print your results to bring to a diagnostician. (Having all those tests completed in advance saved me a lot of money!) Although there are many more diagnosticians available, here is a comprehensive list to get you started.

Lastly, some of my opinions may have changed since I first wrote the piece that lead you here.

Comment with any questions, and I’ll respond as soon as I can.

Leave a comment

To receive new and infrequent musings, the latest fiction and non-fiction narratives, updates, and "life nuggets”, subscribe here.

SIGN UP FOR FREE

*No affiliation.

First off, I’d like to thank Natasha Lipman of The Rest Room for introducing me to the Visible health app.

Her interview with co-founder Harry Leeming can tell you about the history and details of the currently Beta-version app. But in a nutshell, Visible (a play on “in-Visible” illness) is the “FitBit of rest.”

It was designed for people with Long Covid and ME/CFS (Myalgic encephalomyelitis/chronic fatigue syndrome),1 but, anyone can use and benefit from it. Especially now that it has custom trackers. (We’ll get to that in a bit.)

The app came at the perfect time in my life. I’m grateful. And now I want to share it with you.

Throughout this post, I share some app usage suggestions for people who don’t have an “invisible illness,” but understand the importance of rest and pacing yourself.

The following sections cover:

1. How the Visible app improved my life

2. Getting started (with the app)

3. Take an app tour

4. The Morning Check-In

5. The Evening Check-In

6. The rest of the menu bar

7. And to wrap

How the Visible app improved my life

I was down after my hand and arm surgery in October 2022 for a longer period than expected.

Even before that, I contracted Covid in late May 2022. And within two weeks after testing negative, I had a routine every-5-year colonoscopy (Celiac Disease-related) and endoscopy.

My brain was fried.

All that back-to-back-to-back inflammatory beatdowns234 really did a number on my brain. Then, Ehlers-Danlos Syndrome flared from all the inflammation, and I could barely move my body.

My FitBit “shamed” me for inactivity, and all that did was add another layer of stress that I couldn’t tolerate. So, I stuck the stupid thing in my drawer, deleted the app, and cried.

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For most of my teens and early 20s, all I thought about was my body and how to “perfect” it so people would be kind to me.

I fought against its failings, pushing it into a brief stint of being in societally acceptable shape. (Still: A broad-shouldered, linebacker-build woman? Apparently that’s unappealing. Also, this was a period before the Kardashian’s made big butts a plastic surgeon’s cash cow. I was regularly made fun of for having a “dump truck ass.” Kids are jerks.)

As soon as I had my first baby, my health took a nosedive. Yet, I still pushed my body and brain, and forced them “forward” even further—more babies, Pilates which exploded my gut through an incisional hernia, more surgeries, etc.—until it broke.

(Really, it was always broken, but it finally gave out in 2013 after my final pregnancy.)

While stuck on the couch for almost two years in between doctors’ appointments, I finally realized how important rest is to balance mental and physical health.

Yet, as soon as I was able to walk again, I dove right back into pushing myself too hard. Until I literally couldn’t any longer.

And that shaming FitBit just tore me down further.

DOWNLOAD (FREE) VISIBLE APP

So, the day I started writing this, my stability score was a “1.”

And after a few months of using the Visible app, I can clearly see my improved self-awareness. I can tell what my Morning stability score will be as soon as I wake.

I’ve learned to listen to the app’s advisement. It’s my little health consultant trying to improve my life.

When it tells me that my “body needs rest to get back to baseline,” I listen. (Now.)

And although I’m in a weeks-long mast-cell flare at this time, it’s been less destructive than flares or “crashes” prior.

I’m not affiliated with the app, I just want to package this free-in-Beta gift and give it to anyone who needs it.

I certainly did.

To note: I've used the app since its launch in late November 2022.

Since the Visible Blog breaks down the app’s launch, updates and more, I’ll share some ways I use the app. Plus suggestions for people without chronic illness.

Getting started

Download the Visible app from your iPhone or Android’s App Store, or shortcut to the Visible app’s download page. The app is free (in Beta). And I just want to reiterate: The app is still in Beta.

The only “issue” I’ve had with it this early is sometimes the HRV reading (explained below) often says, “Poor quality reading…” and suggests that you retake it. It takes about 30 seconds to complete. But on the few days it says it’s a poor quality reading, I’ll approve it anyway just to see what it was. And now that the HRV can be retaken, I can determine if the approved reading felt accurate or not, and just retake it, if necessary. Typically, the reading is good, and I keep it as-is.

Input your willing data, including what “illnesses” you have.

Some details requested are your first name, your email address, year of birth, and identifying gender.

The preloaded options for the “What illness do you have?” setup question are Long Covid, ME/CFS, and Other.

If you aren’t chronically ill, you can insert something like, “I want to infuse more rest and pacing into my life,” or something along those lines. If you opt out of sharing data with the developer, it doesn't matter what you put there.

In my case, I included Mast Cell Activation Syndrome, Celiac Disease, and Ehlers-Danlos Syndrome. Autism and ADHD, or any other type of neurodivergence works, too.

It all benefits from rest and pacing.

Again, you can opt out of sending the Visible team information about you / your app usage. But I'm an open book. For the sake of the app's development (and for hopeful consideration of other conditions outside of Long Covid and ME/CFS), I allowed the app data to be shared with the developer.

And lastly for setup: The app will ask you if you want to document your levels of Physical, Cognitive, and Emotional exertions. It’s also possible that the new feature of “Other factors” is in the app setup. But if it isn’t, I’ll explain how to set that up in the next section:

Take an app tour

If I recall correctly, there was a basic app tour built-in. Even so, I recommend clicking on your Profile at the bottom menu bar, and on the right corner. There you have the Account info which was requested in the app setup.

Profile > Account info

Profile > Reminders

There’s an option to set Reminders to take the Morning and Evening check-ins. I recommend the reminders, especially for the evening time. With the Morning check-in, I found I only needed to turn reminders on for a few weeks—until I built the habit of visiting the app first thing every morning. But the Evening reminder is always needed, in my case.

Profile > Health info

Below that is Health info, where your recorded “illnesses” live—Long Covid, ME/CFS or Other.

Profile > Your trackers > Symptoms

Then, there are Your trackers. Here, you’ll see a Custom option where you can log your own symptoms in addition to any missed, pre-listed symptoms from the app setup stage.

For my custom trackers, I included things like:

• Mast Cell Reaction (to flag definitive reactions to multiple systems by their severity)

• Inflammation (MCAS-related, still, but a more specific, common symptom)

• Sinus “issues” (also MCAS-related. Instead of creating “Itchy nose,” “Sinus drainage,” “Sinus passage swelling” custom trackers, I simplified to just “issues” and detail it with the rating and in the Evening check-in Note—explained below)

• Swelling (MCAS, again… this is a pattern, huh?)

• Gut discomfort (you guessed it!)

• Joint/body stiffness (yep!)

• and Distractibility (that one’s Autism and ADHD…)

(Now that I’m finally writing this, my brain continues the list of even more custom symptoms I need to be tracking. But I’ll handle that in my own time.)

If you’re not chronically ill, you could list symptoms like:

• Stress

• Anxiety

• Sadness (subbing for the heavier “Depression” in the pre-listed symptoms)

• Etc.

Profile > Your trackers > Exertion

At the top menu bar, still in the trackers section, to the right of Symptoms is Exertion. You should’ve already chosen which (or all) of the areas you wanted when you set the app up. But, again, the app asks you if you want to document your levels of Physical, Cognitive, and Emotional exertions.

Profile > Your trackers > Other factors

To the right of that is Other factors. If you’re comfortable,5 you can document your Menstrual cycle. You can tick Yes or No, if you want to track Crashes, too.

Visible describes a crash “as lengths of time where your illness is significantly worse.”

I include MCAS flares as crashes. But also autistic shutdowns or meltdowns that may occur during the day, as well. This way, I can see how those "Trend-lines" compare to non-crash days and weeks. (I explain Trends near the end of this post.)

And if you have any Medication you’d like to track, there’s an option for that, too.

Although I don’t really need to track the med-meds I take daily, I still added the important two. And I also included Ibuprofen and Tylenol for usage tracking.

And as of right now, there’s a “Coming soon” Health Report PDF section back on the Profile menu that I’m excited to dive into, once available.

The Morning Check-In

The first data the app asks upon opening it in the morning is “How was your sleep?”

Rate your sleep quality from the options:

1. Awful

2. Bad

3. Fair

4. Good

Then, the app prompts you to record your Heart Rate Variability (HRV) first thing in the morning, “before getting out of bed.”

Visible describes the HRV as “a measurement of the variation in time between your heartbeats. More than 55,000 studies show that it reflects the activity of your body’s stress response and recovery systems.”

But the Morning check-in is seemingly designed for single people, or people whose partner wakes before them…. Outside of weekends, I try to calmly get out of bed and go into the bathroom as to not disturb Brian with light. There, I can flick on the bright lights to allow for a more accurate reading.

Yes, getting up and moving a little skews the data (a bit). But if that’s the way you have to do things, that’s fine. The app sets your “baseline” to what's true to you. And not based on some preloaded, potentially unattainable-for-you baseline. So, try to complete the check-ins the same way every day for greater accuracy.

Next, I thought the whole HRV process was BS at first. Yet, according to Visible:

The morning check-in is powered by EliteHRV, which has been shown to produce results on par with an electrocardiogram (ECG) in a research context. However, Visible is not an ECG, and must not be used to substitute for one.

On first use, it’ll ask once for permission to turn on your phone’s camera and built-in flashlight. The latter adds more accuracy, but it isn’t enough on its own, in my experience. I’ve found an external light source is needed for a consistently accurate reading.

When prompted, place your (pointer) finger firmly on your phone’s (main) camera lens. It takes around 30 seconds(?—never timed it) of regular breathing. I look away from the app. Otherwise, I focus on my breathing too much and unintentionally distort the data.

Hold your finger steady on the camera the whole time.

The app monitors your HRV and churns out your “Morning stability” score for the day.

For the first 4 days of using the app, it’s important to use it each day so it can form an accurate starting baseline for you. Now, with their latest update, Visible aggregates data from the past two weeks to make sure your Morning stability score offers you the most accurate reading and advice.

The baseline will shift a little for every two weeks with change.

The Morning stability reading advises your pace for the day, and summarizes how it came to that conclusion.

Since I’ve compiled this post over the course of two weeks, I’ve gone from two days at a “1” (out of 5). And today (as I’m writing this section), I’m at a “3.”

A “3” states: “Slightly unstable.”

“Your body is trending away from its baseline." And advises: "Pace yourself carefully today, if you can.”

My HRV range is currently (it shifts) between 63 and 74, and today’s reading marked my score at a 65—within the baseline range. (You can access these details by clicking on the “Your HRV…” under “Your score summary” after completing your Morning check-in. You can access this information later by simply clicking on the “Morning stability” section under the current day.)

My Resting HR was lower than my recent average, and outside my normal range.

My sleep quality, which I marked as “Fair,” was worse than my recent baseline.

And gathered from the previous Evening Check-ins, my symptoms' severity are increasing as well.

Below the summary section is information on the stability score, HRV, reading accuracy, and more. This information is included on every day’s Morning Stability score breakdown.

I used to disregard the stability score and charge ahead with daily plans. But now (especially while in this weeks-long flare), it’s been three weeks since I’ve attended my beloved writers group. Mostly because I know it’ll make my recovery backslide.

It’s not the group itself, per se. It is partially the social factor of simply leaving the house. (Socializing with great people is enjoyable most of the time. But when I’m stressed or in a flare, it just drains what little energy I have for healing. Plus, it’s “quite a hike” to get to the area where the group meets.)

The Evening Check-In

At the end of the day, you complete your “Evening check-in.”

After you’ve logged your Symptoms for the day based on a scale of None, Mild, Moderate, and Severe, the next step in your Evening check-in is logging your Exertion.

The app asks, “How much did you exert yourself today?” on a scale of None, A little, Somewhat, and A lot. The categories to log for are how Physically (active), how Mentally (demanding), and how Emotionally (stressful).

The next page is to record your Other factors, like if you track potential menstruation, Crash, and any medications.

Then, one of my favorite newer additions is a Note(s) section. Here I record a few sentences on what my day was like. Sometimes I treat it like a 280-character-max diary entry, and other times I use it to explain or speculate about my symptoms.

The rest of the menu bar

On the bottom menu bar, there’s a section called Trends. There you can compare scores and symptoms and see how they all correlate with each other. You can view Trends over the course of 2 weeks, 1 month, and 3 months.

(These are super-handy for doctors appointments!)

And the last menu-bar resource is the Community option. Here, you have access to the Visible blog under the Discover tab. As well as studies under the Research tab. (This section is sparse as of now, but I'm sure they'll add more as necessary.)

And to wrap

Visible keeps its users updated. Literally.

Often, upon opening the app, we’re told about the latest app update, including new features and bug fixes.

As far as I can tell, Visible has made transparency a priority. And as a reader of mine, I assume that’s something you enjoy, too.

DOWNLOAD THE VISIBLE APP (FREE)

As my heftiest post on this platform, you're a rockstar for reading this whole thing!

I hope you took a good deal from it, and I hope that you consider downloading the app as even a FitBit / comparable-app partner: The rest and pacing accompaniment.

My best,

Sara

     subscribe to | my free, sporadic newsletter

     get the | Content Strategy Planner

     support my work and | “buy me a coffee”

     visit the website | segwrites.com

P.S. I predominantly write from my personal experience as an Autistic person with ADHD, chronic illness, Anxiety, and more. Each of these factors can influence my individual experience overall, as well as my experience of each condition.

What I share is not a substitute for medical advice.

Self-identification of Autism and ADHD (what many call “self-diagnosis”) is perfectly valid. If a personal Autistic experience I write about resonates deeply with you, consider these resources on Embrace Autism (starting with the Autism Quotient Test) as a first step. If professional assessment is important to you or your life has been impeded enough that you may need to qualify for Disability, you can print your results to bring to a diagnostician. (Having all those tests completed in advance saved me a lot of money!) Although there are many more diagnosticians available, here is a comprehensive list to get you started.

Lastly, some of my opinions may have changed since I first wrote the piece that lead you here.

Comment with any questions, and I’ll respond as soon as I can.

Leave a comment

To receive new and infrequent musings, the latest fiction and non-fiction narratives, updates, and "life nuggets”, subscribe here.

SIGN UP FOR FREE

I have various interests, passions, and desires. We all do, I’m sure. And this time around, I’ve chosen to not focus on one theme or niche with my writing.

I’ve worked several different jobs since I was 13 years old.

I've been:

• a restaurant busser (my first job! “Under-the-table” at 13, working for a fellow softball player’s parents’ business for a couple of summers)

• a customer service rep

• an office assistant

• an office manager

• Vice President of a small company

• a traveling sales associate

• an opera singer

• a downsizing contractor / a “down-sizer” (a subcontractor helping companies close or downsize with minimal fallout. Sounds terrible, but mostly I helped laid-off employees find new employment)

• a brief stint in insurance

• a ghostwriter

• a restaurant server

• briefly a stay-at-home mom

• a Mary Kay consultant (learned a lot, at least…)

• a graphic designer

• a website designer/front-end web developer

• a blogger

• an entrepreneur business consultant and online strategist

• and a freelance writer

And I’ve seemingly been even a slightly different person with each job and with each stage of life.

Within the past few years, I realized I’d only ever made professional decisions based on what other people said I was good at, or because of something others wanted or needed from me.

Marketing experts will tell you that’s the key to professional success: find people’s pain points and sell them a solution. But after at least 8 major Autistic burnouts1 (not including health downtimes), I can tell you that this method of "professional success" isn't for everyone.

Or, maybe just not for every neurotype.

I can hear my old Mary Kay network of uplines at their rented meeting space in Sarasota, Florida. They'd constantly say in one way or another that we have to push ourselves beyond our comfort zones.

“When we’re comfortable, we’re stagnant.”

I disagree, to a point.

When I’m comfortable, I have the capacity to work and grow. When I’m uncomfortable, I’m more likely to experience mental paralysis,2 leaving me stagnant, and with increased executive dysfunction.3

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After a slew of health issues and, later, diagnoses; most doctors blamed my predicament on me being fat. Only after we moved to Seattle in 2018 was my body finally acknowledged as a symptom and not the problem.

I was diagnosed with ADHD in 2019. During the COVID-19 lockdowns of 2020, we discovered that our household members are all Autistic. And in early 2022, myself and my three children were officially diagnosed. My husband, Brian, self-identifies as Autistic (perfectly valid), and as it namely affects him socially and communicatively, he’s found no need to seek official diagnosis. I needed external validation from a professional. He didn’t.

With every twist and turn in life, I’ve molded myself into whoever someone else needed me to be. It was a survival strategy of a neurodivergent mind in a neurotypical world.

I feared rejection, and feared being thought of (or found out) as an imposter.

I didn’t deceive to be deceptive.

I camouflaged the version of myself that brought out the most vile pieces in others so I’d never have to see that side of people again.

“Everyone masks [their true selves],” an Allistic (a non-Autistic)4 person always seems to chime in. But as an Autistic person trying to survive in a world not built to include us, you keep masking5 to get by. Because the rejection of society is far worse than the thought-to-be irritable bowel syndrome (IBS) you suffer from, or the chronic headaches, or the severe anxiety and, often, depression—symptoms that seem synonymous with Autistic people.6

Then once you (think you) get everything figured out, you know it’s best to unmask7 your authentic self. Beneath, you have years—layers—of your carefully crafted persona. A persona which allowed you to skulk along in society generally undetected.

You begin peeling back those layers. And by the time you begin, you’re unraveling a canvas that’s been painted over so many times, it feels impossible to differentiate which layer is actually you and which ones you built up to just get by with.

It’s such a mess, you wish you unrolled a blank canvas instead.

To begin unmasking and defining my authentic self, I started by identifying the things I knew were true about myself:

• I love writing, singing, reading and consuming stories from all mediums.

• I love the Visual Arts, too.

• I love my family, my “chosen family,” and friends. And I love figuring out relational things, growing socially, etc.

• I like, but simultaneously hate, the outdoors. Mainly due to potential bugs, feeling unclean is a major sensory issue, and my mast cell condition makes heat and sun exposure dangerous. (Probably compounded with the pain of hypermobile Ehlers-Danlos Syndrome [hEDS],8 too, makes the outdoors more difficult to mentally and physically traverse.)

• I far prefer living in a metropolis and visiting the suburbs, the woods, etc. Even as a family with three kids.

• I have an overwrought sense of justice.

• I’m a secular humanist.

• I’m egalitarian.

• I love makeup and skin care, and learning how to improve skin health and appearance (without cosmetic procedures).

• I’m obsessed with indoor plants.

• I’m intrigued by sociology, psychology, anthropology, and studies on neurodivergence.

• And I’m interested in health and wellness catered to people with chronic illness and those with general disabilities.

And I like to talk and write about these topics, as varied as they may be.

My writing isn’t exclusionary.

I don’t write solely for chronic illness and/or neurodivergent folks. I focus on living life with intention that just-so happens to revolve around the chronically ill and the neurodivergent. Which means anyone can benefit from it, especially those who want to take life and work a little slower and approach both with more purpose.

I explore living life to the fullest without guilt, shame, and with as little (unintentionally) self-inflicted pain as possible—no matter life's complexities.

My goal is to not run myself into the ground like I’ve repeatedly done in the past; holding myself to some neurotypical, healthy-person standards that have set me up for failure from the very start.

As varied as my writing focuses may seem, over the past decade, I’ve found there are people who enjoy and care about the same things I do, no matter the vastness. I write and share because I love to, and enjoy when others do, too. And because I genuinely want to contribute even a small takeaway you can utilize in your life. Something you can improve your communication with, something to increase connectivity and empathy with others over, and something that can offer someone more joy, self-exploration, and contentment.

So, I continue writing and sharing.

I’m weird. I’m scattered. I’m kind-hearted. And I’m extremely flawed.

You’re welcome to challenge and engage with me by replying to any message you receive, or emailing me directly at sara[at]segwrites.com.

I’m on a mission to continue figuring out who I am without the social mask I spent decades creating. And I’m ecstatic that you’re journeying with me.

If you take anything from this, let it be that I care about you and that my goal is to expand what we both know, what we can empathize with, and contribute to bettering us both, whether that be through non-fiction or exploring fictionalized scenarios.

Through writing, I’m focusing on finding my Authentic Self by mining the past, present, and building toward a future I can be proud of, and one we can all feel even more comfortable in. And I'll do my best to offer plenty of nuggets, takeaways, and entertaining bits for you to pocket along the way.

Thanks, again, for joining me. And thanks for reading.

My best,

Sara

     subscribe to | my free, sporadic newsletter

     get the | Content Strategy Planner

     support my work and | “buy me a coffee”

     visit the website | segwrites.com

Where do I suggest you start, you ask?

Here are a few pieces of variety that, I hope, will offer a window into what you can expect from me.

On Substack:

• Silently saying goodbye, essay on friendships, neurodivergence, and the Seattle Freeze

• 18 years later, on the life and death of a beloved parent

• Not tripping for fall, on the newly discovered productivity act of “closing loops,” and unmasking Autism

• The lowdown, on Alexithymia, Interoception, and a further peek into life with EDS, MCAS, ADHD, and Autism

• Never Getting “Better,” But (Hopefully) Getting Closer, musing on chronic illness

From around the web:

• Open, a flash fiction piece on a one-sided open marriage, on Patreon

• reclaiming stolen time, a musing on the post-pandemic lockdowns recovery of altered and lost time with growing children, on Hey, World!

• But You Don’t Look Autistic, an essay on Autism and Autistic women, on Invisible Illness

• fitting in at what cost?, an essay on Autistic masking, on Hey, World!

• It’s All Immaterial, a piece of short fiction from the perspective of a young man just diagnosed with cancer, on Medium

• That’s a Twenty Well Spent, an essay on giving, on The Ascent Publication

Enjoy, and thank you.

SUBSCRIBE TO *NEW* NEWSLETTER

P.S. I predominantly write from my personal experience as an Autistic person with ADHD, chronic illness, Anxiety, and more. Each of these factors can influence my individual experience overall, as well as my experience of each condition.

What I share is not a substitute for medical advice.

Self-identification of Autism (what many call “self-diagnosis”) is perfectly valid. If a personal Autistic experience I write about resonates deeply with you, consider these resources on Embrace Autism (starting with the Autism Quotient Test) as a first step. If professional assessment is important to you or your life has been impeded enough that you may need to qualify for Disability, you can print your results to bring to a diagnostician. (Having all those tests completed in advance saved me a lot of money!) Although there are many more diagnosticians available, here is a comprehensive list to get you started.

Lastly, some of my opinions may have changed since I first wrote the piece that lead you here.

Comment with any questions, and I’ll respond as soon as I can.

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Confession time: I’m foolish for not preparing my Supernote templates to sell before creating this series. But the first (and last part) of the year is the best time to share about planning, and I didn’t finish organizing and packaging the templates beforehand. Likely a missed opportunity for all, but it’s on the agenda for now.

I’ll have extra-special options for you that won’t only apply to Supernote tablet owners (what I show throughout this planning series) coming later this year.

Thanks!

I’ll cut right to the chase.

This is so simple I feel stupid even sharing it. But just like with the surprising, appreciative email responses I received around the “Energy-Level Thinking & Planning” post, I’m hopeful this next practice can be super-useful to even a few of you.

Here it goes:

Create a habit-focused workflow for yourself to review every [insert the best time of day for you here]. Before you begin work or a personal project, sit down with your planning tool of choice. And check-in with each area of importance in your work and/or life.

I told you it was stupid-simple.

Okay, it sounds simple enough, but building yourself up to the daily practice is the hard part. First, let's discuss habit creation (plus a few personal, adjusted examples).

Create habits you can actually keep up with.

Samuel Thomas Davies created a solid summary of James Clear’s book, Atomic Habits.* But to borrow from the full summary here:

1. A(n atomic) habit is a regular practice or routine that is not only small and easy to do, but is also the source of incredible power; a component of the system of compound growth.

2. Bad habits repeat themselves again and again not because you don’t want to change, but because you have the wrong system for change.

3. Changes that seem small and unimportant at first will compound into remarkable results if you’re willing to stick with them for years.

My habits before Covid-infection weren’t bad or wrong for me. But I found that some habits needed to get broken down further. And some just needed to move to different scheduled days, etc.

As I've grown and changed, I added some new habits, too.

For example: My pre-Covid infection habit for my (own) laundry. It had me running dirty clothes and putting them away two days a week—both actions occurring on the same day. My change post-Covid infection was to run my laundry on one day. (I wait until my behind-the-door, hanging laundry hamper-bag* gets full and run it then.) While that’s in the washer, I pull up digital bullet journal's daily page, and on the following day, I write “Put away laundry” as a task. I'll write for an hour, then when done, I load the clean items from the washer into the dryer. And as long as nobody else's hampers need running, I just leave the dang clothes in the dryer overnight. (Thankfully my clothes don't wrinkle if left for less than 48 hours.)

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Now, I’m less stressed. And by pre-deciding to split laundry day in two, clean laundry isn’t sitting around in a basket anymore. (At least mine isn’t...)

Another simple-change example regards caring for my plants. I used to mist all my over-30 plants every single morning before sitting down to work. Post-Covid infection, I split it up: I mist the tropical plants on Mondays and Saturdays, and all the plants on Wednesdays. I’m pleased to report that the plants haven't died and they seem perfectly content.

Another plant-related change was that I used to have “Watering & Plant Care Day” on Saturdays. But I found that I can’t concentrate like I used to, and using a weekend (when my whole family is home) to filtered-water-only care for my 30+ plants ate up a potential family day. So now I moved Plant Care Day to Wednesdays, and spend an hour buckling down to complete the often mammoth task.

On Wednesday morning, I mist all the plants first thing. Then, I make sure the Berkey water filtration system* is full/fill it preparing for the afternoon's watering. Right before watering the plants, I fill the Berkey again to create a (somewhat stressful) deadline for myself. (Since installing two more filters—now four, total—the upper, tap-water tank drains into the lower, filtered tank twice as fast as before. So if I don’t finish the plant-watering job before the lower tank is empty (meaning: I’ve watered the plants), then the lower tank overflows…

This might be an extreme task-management method, but dang, does it work for me.

And, now, I don’t miss Plant Care Day anymore = not-dehydrated plants.

Create habits that count.

What habits do you need to maintain in your work, life, etc.? What needs to get done daily, weekly, or monthly?

What habits do you need to progress?

Through research, James Clear established that, on average, it takes more than 2 months before a new behavior becomes automatic—66 days to be exact.1

(To note: I count this daily practice as one habit, even if you're adding, say, 6 new tracking "sections" to your routine.)

Now, let’s get into the components of what makes up my simple, daily practice to help you progress in work and in life.

I’ll deep-dive on each of the mentioned pages/notebook sections another time, but here’s the basic rundown:

Decide: What’s your best method of staying organized?

I’m absolutely a visual person. I need to see what I’m working with (usually) to make progress on projects and such.

The switch to digital from paper planning made that more difficult (to a degree). But I found workarounds.

In this case, I'll add: Don't forget to consider your values and needs.

Switching to digital, for me, was simply because we were drowning in notebooks. Plus, I was so tired of recreating and rewriting the same spreads and tasks over and over and over again.

I prefer small notebooks, which means every one to two months I was moving into a new notebook. I’d record videos of me slowly flipping the pages as a sort of “digital backup.” But seeking information I required from old notebooks was still difficult. And keeping stacks of journals in a “smaller” space with five people in it was problematic, too. (Probably exacerbated because I also have a problem with collecting books and plants…)

With that, there are plenty of visual and more considered-tidy organizational methods to choose from:

• a dry-erase board (with sticky notes?) or corkboard

• a paper notebook

• an online program or app (i.e., Trello, Planner Pro (Apple and Google), OmniFocus, etc.)

• an iPad or competing tablet (maybe with GoodNotes or Evernote on it)

• an e-ink writing tablet (like the Supernote or reMarkable)

• (Anything else you can think of? Please include it in the comments.)

Admittedly, the dry-erase board is my favorite option. Collecting short summaries of all the important pieces onto one board (or multiple ones), plus colorful sticky notes displaying the bits to focus on = Chef’s Kiss.

But after moving to Seattle and downsizing into half the square-footage of our Florida house, there was no room for boards on the wall anymore. (Also, I tried to streamline our shared spaces to create a calming effect.)

Since, I’ve come up with workarounds which I’ll cover later on. For now, let’s move on to:

Decide: What do you need to know to start every day on “the right foot”?

Back when I did the whole paper bullet journal thing, I’d keep the goals and Preview Planning-type spreads at the beginning of the notebook. Then I’d move onto a Monthly calendar—whether listed or like a standard, grid-calendar. Immediately following, I’d have the Weekly spread, which broke down the major tasks and events of the week in greater detail than the calendar. Then I’d have Daily pages where I’d include the day’s events, day-to-day tasks, what meals and snacks I ate, and notes on the day.

(Did you catch that I re-wrote the same things over and over many times in the same notebook? Yeah. Apparently I like hand-writing so much I’m willing to sacrifice time and hand-energy. No wonder I need surgery for carpal tunnel, nerve damage, and more…)

The repetitive stuff aside, I created a cyclical vacuum with this method of planning and organizing.

With that, I listed the things I know I need to do/review, and easily reference daily:

• the Preview Planning pages

• a rolling (duplicatable—no more hand-writing the same things over and over again) tasks list—credit to Plant Based Bride on YouTube

• a weekly “Goals, Action, and Plan” (GAP—credit to Matt Ragland on YouTube)

• a “daily notes” collection where I add some day-specific tasks and take notes on the happenings of the day; a reference-able log, of sorts

• a food diary (namely for health reasons, as food is a major trigger for my mast cell condition2)

• affirmations (thanks to my therapist)

• my writing log

In a paper bullet journal, I may have all these categories organized back-to-back-to-back. But in a digital bullet journal, I have each one in a separate “notebook” in my Supernote.

So, what do you need to track most? What do you need to reference daily?

List those areas out.

Would you have several notebooks or pages to review like I do?

Would, simply, brain dumping the day’s needs into a note on your phone?

Would you pull from an existing list of tasks to isolate the day’s needs?

It’s a personal process and system that you can customize to your needs.

A basic outline of my morning check-in, daily practice.

My morning practice consists of me opening my Supernote tablet’s cover. My screensaver is a screenshot of my Projects page—a regular reminder of what I’m working toward, and a decent white-board replacement.

My notebooks/sections are in a "Planning & Tracking" file, and organized by numbers. From there, every morning I open each necessary notebook to check in and fill in wherever needed.

1. With the first—the Weekly (GAP)—notebook, I typically only look at the preview page to quick-reference any events. I also refer to pre-drawn weather icons (using the AccuWeather app), remind myself of the week’s goal, etc.

2. Next, I open the Rolling Tasks list, and review the recurring tasks scheduled for that day. (I’ll go over how I use this another time. For now, you can check out the creator’s version here.)

3. I just glance at the Monthly (Preview) Plan’s preview image most days. But I mentally note any tasks there that I could tackle that day or another day that week.

4. Then, I open the Daily Notes notebook and record any day-specific task(s). I'll also take notes on what happened the previous day.

5. Moving onto the Food Diary, I fill in whatever I ate yesterday: Breakfast (B), Lunch (L), Dinner (D), and Snacks (S).

6. I swipe to the next section within the file to the Affirmations page. There, I record three “I (am),” positive statements about myself every day. I begrudgingly started this practice after my therapist recommended it. After a few weeks of spotty entries, I finally committed to daily affirmations about 3 months ago. Upon noticing my self-esteem was less fragile—even with the spotty practice, I now dedicate a couple of minutes to come up with something every day. (Although I’m sure there’s been plenty of repeats in the almost one-year practice. That’s okay. It just means I truly believe it about myself. And that’s a fantastic thing.)

7. And lastly, I record the day-before’s writing project, what I contributed, and how long I wrote for in the Writing Log. This is another motivator, and generally the final step right before I start writing that day. (I often compete with myself by checking how long I wrote for the day before, and challenging myself to go an extra 30 minutes+.)

I hope you create your own habit-centric daily practice that provides you with as much motivation, and is as effective as mine has been for me.

My best,

Sara

     support my work and | “buy me a coffee” (a one-time tip)

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I rarely complete my goals and plans within the timeframe I set for myself.

I’m bad at “guessing” how long things take me. So, I end up planning ahead based on some unrealistic deadline that will never fly for me.

Sometimes the ADHD side of me just gets bored with whatever the Autistic side of me set up for myself in advance. At times, I venture to try something different, or approach the same idea other than what I planned for.

But, I realize, it’s often that I have a lot going on in my life—most of which occurs as a surprise that “throws a wrench in the works”, or however the saying goes.

Instead of holding myself to some rigid plan I set up during a different time than what I’m currently experiencing, I prepare for each project in advance, but I focus on keeping things flexible.

I utilized sticky notes so they could be moved around back when I used paper. And now that I use a digital notebook, I can still move things around as needed.

But there’s more to it than just the tools and methods we use to plan. There’s also our differing neurologies to consider.

Every brain is different.

My brain is one that won’t do anything unless instructions are “on paper” first. My body is on board: When I don’t have a plan to wake up to, I’m in a worse mental, and sometimes physical state.

I’m work-motivated. Say, one of my kids asks me to wake them early. I’m more likely to be able to get up for them when I have a professional goal set as foundational motivation. (The other side is: I tell them they can set their own alarm, and I can maybe serve as backup. Self-reliance is an important skill to learn, I’d say.)

Oh, don’t get me wrong, there’s always plenty to do. But if it’s not recorded, I get too overwhelmed to move forward. I have to write things down, then create a framework around the expectations I’ve set for myself.

Okay: I know I've written about habit-building (plus my revamped version) and having daily themes being motivators as well. But they’re not springboards, they’re infrastructure.

First, consider how your brain functions.

What motivates you?

Does a “loosey-goosey” plan float your boat? No plan at all? (That person probably didn’t start reading this post, if so.) Or a high-detail plan (that you may or may not set a hard deadline on)?

Once you’ve noted your motivation and detail-level of planning, let’s focus on your growth infrastructure.

Let's start with what I like to call my “Preview Plan”.

What’s a Preview Plan?

When I set a goal or project up, I’ve already considered the planned-for interruptions (thanks, initial goal-setting). I begin with every project and goal already broken down into action steps.

I have separate files in my Supernote covering each goal or project, so when I get to work on it, everything’s pre-organized within each file.

With a Preview Plan, I create a bird's-eye view of the month ahead.

If you're an entrepreneur, my pre-selected categories will probably work well for you. But hang tight if you're not—I have some suggestions for non-entrepreneurial categories below.

My (Monthly Plan) Breakdown: The Sections

Each month gets one page (in my Supernote), but the same general framework can apply to a paper notebook, etc.

There are Events, or future events you can plan for. Then, there are Birthdays (anniversaries and such too). This way, I have an advance warning of upcoming dates.

And the "4 P’s of Professional Growth":

• The task-driven breakdown of Projects in each month.

• The key Personal tasks that need to get done that month.

• What “new” or different task(s) you can complete to add to your Profit. If you’re not an entrepreneur, consider things you can do to increase your income for that month—if you care to, that is. Otherwise, you could substitute this section with, say, your basic week-to-week work schedule if yours differs weekly / monthly (i.e., What days are you going into the office? What days can you work from home?). Or something entirely different like “Personal Projects” or “Home Projects,” or whatever else better suits you.

• And Promote is whatever new or different task(s) you suggest to yourself that can grow your business or social media presence or newsletter—whatever numbers-driven area of your life that’s focal that month for you. If you’re not trying to grow a business or online / social presence, this section (in addition to those in the Profit section) could also break down personal tasks or projects further into categories. As in (other than Personal Projects and Home Tasks mentioned under Profit), you could break down a small segment of tasks for building a new hobby or expanding one you already have, creating a new habit, etc.

To note: When I say "new or different," I’m referring to whatever task you don't normally do / that isn't a habit-task of yours.

What the symbols mean.

When I was actively a part of the bullet journal community on Reddit, I was often asked about the “different” symbols I used. Let me explain them briefly:

• Under Events and Birthdays, the encased number is the day within the month it falls on. If the day-number is in a box, it’s a special event/important date of note, birthday, anniversary, or holiday (e.g., my kids’ open houses as they’ll move onto new schools next year, etc.). If the day-number is within a circle, that means it’s an appointment or in-person event—doctor appointments, hot dates (your anniversary since pre-planning “hot dates” feels less “hot” to me on the regular…), surgeries, etc.

• A tiny circle or dot (•) serves as a task. X-ed out task-dots are completed. One line through a task-dot (the back-slash (/)) means it’s been started or is actively being worked on.

• A dash (-) is a note.

• A plus (+) is a suggestion.

• An asterisk (*) signifies an important note.

• And, although my photo examples don’t show this, an arrow on the left of a task-dot pointing toward the dot (→ •) means the tasks will move to a future date / month.

Plug and play.

Begin filling out the next 6 months on the free worksheets below.

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Note: You can use sticky notes in each section so you can move things around or change them as needed. This is especially effective if you don't want to print for, say, a single month repeatedly.

First, title the pages with the Month and Year for 6 months.

Then, populate the Events and Birthdays that you know of. (Use an asterisk if you need to project an event or something that you don’t have concrete information on yet, but you estimate will occur within that month. Definitely use a sticky note for this, if possible. Those small sticky notes—Post-It Page Markers*—are great here.)

Using your predetermined goals and projects, plug those in as needed.

I always start with the Projects as, often, my Promote and Profit sections reflect the project(s). Then I move onto Personal—any birthday parties to plan? Going to move in a couple of months and need to prepare in advance? Have to hire a new house cleaner or plan for a large purchase in advance?

When planning, the closer to 6 months-out you get, the more difficult it may be to come up with categorized tasks and suggestions for yourself. Not to worry.

The sections I’ve found to be the most pivotal month-over-month are the Events, Birthdays, and Projects. Everything else can be viewed as a gentle suggestion for how you can continue advancing yourself and your work / home life.

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I’ll share more about how I keep up with my 6-month Preview Plan next. We’ll cover my everyday, simple practice that makes continued progress seem almost effortless.

My best,

Sara

     support my work and | “buy me a coffee” (a one-time tip)

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Are you familiar with bullet journaling?

If not, Very Well Mind describes a bullet journal (also known as a “bujo”) as a mix of a daily planner, to-do list, and diary.

The bullet journal is an analog journaling system created by New York-based designer Ryder Carroll. He describes this planner / journaling approach as a method to "help you track the past, organize the present, and plan for the future.”1

Bullet journaling changed the way I plan and work. But one major, life-changing idea snagged from the bujo community was energy-level thinking and planning takes the cake for me, seeing that I was already designing my own planners and templates before bullet journaling hit the mainstream.

Roughly five years ago I came across an ADHD, minimalistic bullet journalist who helped reshape the way I thought about planning. (I wish I could remember her YouTube handle….)

After creating various planners in the past decade, I thought I had the whole “simpler is better” thing on lock. But when I stumbled onto bullet journaling, I was tempted by the gorgeous spreads others proudly presented on Instagram and, as I later discovered, on the r/bulletjournal subreddit.

But the more elaborate the spreads I created, the less actual effective planning and progress got done.

So when I noticed said bullet journalist’s simple approach, my effectual world opened up. Her layouts were beautiful, but unlike most of the intricately designed notebook shots I came across, hers had long rows of completed tasks.

Her most inspirational (to me) spread contained two columns splitting up two general energy levels: Low and High.

Her list regarded home cleaning/tidying tasks, but the basic concept can apply to many areas of life and work.

My first adaptation was for work (of course). Like with my goal setting approach, I wrote “Work Tasks” in the center of a piece of paper. Then brainstormed all the activities and tasks I already do or want/should do to boost professional progress.

Once I had a robust list, I assigned an L, M, or H next to the task—Low, Medium, and High.

From there, I created three organized columns in my digital bullet journal for the Low, Medium, and High -Energy Tasks.

Under High I had things like:

• Write a short story

• Work on a guest-writing piece

• Market new or existing pieces

Under Medium I had:

• Read

• Brainstorm writing and project ideas

• Work on a [Substack] post

Under Low I had things like:

• Search for (publications) to write for

• Journal or “brain dump”

• Create a graphic for (X) or tinker with website (which could mean adding new content links as needed, research the latest trending homepage layouts, etc.)

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Treat these lists as evergreen and productivity-enhancing.

They can serve as your continued momentum while keeping you in a healthy mental and, often, physical state.

(And now that I’m writing about this, I hope it finally motivates me to update my energy-level tasks lists for home upkeep, for home-cooked meals, and to even create one for family activities.)

How I Use My Energy-Level Lists

Before I sit down to work, I assess how I’m feeling and where my energy level is. (Yes, this is also a great practice for fellow Autists; especially those of us with alexithymia2.)

I then refer to my list for ideas on what activities to do. This way I’m always productive without stretching myself beyond what I can handle in that day or moment.

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This doesn’t mean that I ditched theming work days or anything, but I adapted that method into a new way of working.

For example: Each energy-level list has at least one task to progress each area of work or of a project.

Let’s say I need to write a Substack post. My dedicated post-writing day (now) is Thursday. If I wake Thursday morning and note that my energy level is low, I'll brainstorm topic ideas, or plug a first draft or free-written piece I’m considering for next week’s post into the Hemingway Editor app (you can tinker with it here for free, and get it here—no affiliation, I just like it) and let it dissect the crap out of my writing.

(Note: The Hemingway App, I’d say, is specifically for online writing. It will ruin prose writing by oversimplifying your work.)

At a medium-energy state (my general state of being), I can write or edit a new post. On these days, I also rely on my husband or a writer- or reader-friend to read through a piece and give me feedback.

(My early drafts are seemingly always disjointed, and often went published that way in the past.… I need to put a lot of distance between myself and fresh writing, but when you do a weekly newsletter, that’s fairly impossible. So getting outside help, for me, is something I’ve recently discovered to be a necessary addition to my process.)

My husband’s been helping me connect my thoughts better. His engineer-brain helps me cut the fat out of my blubbery writing.

At a high-energy level, I’m writing, editing, and marketing new and previous pieces, etc.

Another example that may be more generally applicable is reading. I love reading, but especially since I had Covid, my ability to concentrate differs day-to-day. So on a low-energy day, now, I’ll review my hard-copy books. If there are any titles I don’t want anymore, they're added to a tote in my closet to review again when my energy level is higher. (Later those totes go to one of the various used book stores locally that purchase books, and whatever isn’t sold goes into one of those cute little free libraries sprinkled throughout the city.)

Another low-energy “reading” task is to review my email newsletter subscriptions to see if there’s anything I’m not interested in anymore. While in a low-energy state, I write down the newsletter title and what it covers, as well as the date I unsubscribed from it. (I often find myself re-subscribing later, though—hence why I jot down some details beforehand. My brain is fickle.…)

At a medium-energy level, I’ll read newsletters I’m subscribed to, or sometimes a book, if it’s not too complex.

At a high-energy level, I will dedicate at least an hour to reading if my brain is willing to comply; because right now, even if my energy is up, it doesn’t mean my ability to concentrate is.

I’m a very different person at each energy level, and I try to care for my state of wellbeing accordingly.

It’s like parenting: a one-size approach doesn’t fit all for each child.

Children don’t all respond to the same form of praise nor “punishment”. So, why would we try to force ourselves at a low-energy level to do something only our High-Energy Self could do?

I never know what state I’m going to be in day-to-day, and often portion-of-the-day-to-day basis. I may wake well-rested and excited for the day, but by the time I sit down for my coffee-breakfast, I’ve run myself down already (probably tidying the house before work, or simply just getting the kids out of the house and off to school).

Nothing’s ever certain. But I’m prepared in some way, shape, or form for each area of need to progress in my life and work.

And don’t forget to prioritize rest.

Something I have to remind myself often of is to rest. And these lists actually help a great deal.

If I'm having trouble deciding what low-energy task to do, often it's my body or brain trying to communicate that it's not able or willing to do anything.

This is said from a place of privilege, I know, but prioritizing rest is important for anyone who needs it.

How will you keep track of your lists?

Would you use a bullet journal with a sticky-note tab marking the page(s) for quick-reference? Do you keep your lists in the Notes app on your device(s)? Do you keep a saved audio file that dictates your list back to you, which you’ve pre-organized each file by energy level?

I keep my current, active list in my digital bullet journal, but have mostly committed them to memory at this point.

On low-energy days/moments—go figure—I always need to refer to that list though.

My initial list-keeping method was typed up in an Apple Pages document, in card templates on two pages (totaling four cards, front and back). Then I printed them front and back, cut them out, and laminated them.

I hope you found something valuable in today’s post.

Next, I’ll share about how I “preview plan” to set myself up for 6 months at a time.

Thanks for reading, liking, and maybe even commenting.

My best,

Sara

     support my work and | “buy me a coffee” (a one-time tip)

     offer ongoing support and | become a Patreon patron 

     get the | Content Strategy Planner

     visit the website | segwrites.com

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Never one for New Year’s Resolutions, I’d still force myself to say something when asked, even though I never meant it.

I thought resolutions were something everyone had to set—whether they actually did them or not—because people on TV talked about it.

(Naivety was my “first language”.)

So in lieu of making resolutions each year, I review the previous year, and set my 5-year goals and projects (my breakdown was discussed in the previous post). And, now, set my goals, projects, and values side-by-side to see how they all align and what changes should be made to keep them all congruent.

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To note: I was a goal-oriented person prior major illness, but always felt like there was something missing, even after reaching a goal I’d set for myself.

Several weeks ago I struggled to break down my 5-year goals shared about in last weeks’ post. Then one day at my writers group, someone mentioned “values versus goals”.

Goals have an end date with an end result. When you reach a goal, it’s wise to set a new goal or risk stagnancy. But values are forever. When you function from a place of values, opportunities are never-ending.

According to the Merriam-Webster dictionary, goals are defined as “the end toward which effort is directed”. And values are “relative worth, utility, or importance, or something (such as a principle or quality) intrinsically valuable and desirable”.

I hate to admit that I had no idea what I truly valued, and would regularly produce a half-assed response to the question: “What’s your New Year’s Resolution?”

And although I’ve actively practiced this resolution-alternative method for years, I didn’t quite understand or nail down my values until recently.

Within the past three years, we learned that our whole family is Autistic. Since, four out of five of us have been officially diagnosed.

I got diagnosed and have since been on various medications for a condition called Mast Cell Activation Syndrome (MCAS). According to the Genetic and Rare Diseases Information Center, MCAS causes a person to have repeated allergy symptoms affecting several body systems. In MCAS, mast cells mistakenly release too many chemical agents, resulting in symptoms in the skin, gastrointestinal tract, heart, respiratory, and neurological systems.1

I got diagnosed with Ehlers-Danlos Syndrome (EDS, a Spectrum Disorder: a group of inherited disorders that affect connective tissues—primarily skin, joints and blood vessel walls).2 And I've since learned of and about my physical limitations. I now make regular accommodations for myself for safety and long-term health.

I had EMG nerve testing done in May (right before I caught Covid and infected my whole family…). The test revealed that I had significant nerve damage to the point that the doctor said he was shocked that I had any use of my hand. Later it was confirmed by a specialist, in addition to severe carpal tunnel, that I have internally detached thumbs due to the EDS. I had surgery in mid-October on my non-dominant hand and arm, and I’m somewhat putting off my dominant side out of fear.

I learned more about my family’s communication style and needs since the Autism discovery, as well. And we've since learned how to better function as individuals and as a family unit.

I gained better compassion and understanding for different types of people with different ways of thinking. As someone who tends to function from a place of “all or nothing”, I discovered that the world isn’t such a rigid, binary place. But this is still a major learning curve for me; Autistic brains tend to lean toward rigid thinking. My rigid thinking makes it harder to see and accept….

I learned, truly, how important it is for me to move my body every single day. Even if it’s cleaning my house over taking a walk, my brain and body need any sort of movement.

(I’m sure most all capable bodies do.)

I learned that my body, for all its flaws, is a powerhouse—the opposite of the “falling apart [vessel]” I used to think of it as. It can handle and get me through much more than I ever gave it credit for in the past.

Of course, I wish a global pandemic didn’t have to happen for us to slow down. But to be able to learn these things, we had to be forced to slow down. And the only thing I’m grateful for the pandemic lockdowns were the time it afforded our family to be together, and grow and learn together.

I’m grateful to the three therapists whom were there for me during my three different Stages of self-discovery over three years. And especially grateful to my current, neurodivergent-friendly therapist most of all.

I’m grateful for my husband. He's been so patient with my ever-changing existence. I'm grateful for his love and seeming acceptance of each version of me through every shift.

I’m grateful for my children who are all three incredible people, and I am so fortunate to be their mother.

I want to remember these positive things when life serves me up pain, discomfort, and even misery. Likewise, I want to always recognize my journey, acknowledge the rough bits, but look up and look forward to the future.

And I want to make sure I never let writing fall by the wayside again. Through light and darkness, I’ve always been able to pull myself up because of writing.

It’s how I process. It’s how I grow.

My main focus for 2023 is to be consistent within the parameters of my limits.

I’ll have the same surgery that happened on my right hand and arm on my left—my dominant hand—sometime this year. And, based on my current recovery, full-ish recovery seems closer to three months. (I’m currently in the 12th week post-op on the right side, and still experiencing some challenges. I’m confident in a three-month guess, especially since my left side is nowhere near as bad as my right side was…)

I’ll note that there are mornings where I can’t get out of bed—or if I do, I’m a zombie who ends up crashing midday, anyway. And there are other days where my connective tissue or mast cell reaction to foods, environmental factors, and heat prevents me from “zipping” around like I want to.

These limits dictate what I can do in my day-to-day, and I have to acknowledge and be mentally ready for them.

With that, setbacks or “creative dead spots” are going to happen.

There will be weeks at a time that I can’t get my weekly newsletter out. But as you’ve shown me, that’s only something that bothers me and less-so you.

Instead of beating myself up over all the things I can’t or struggle to do, I’m reframing my perspective on work and life.

With that, I finally gathered up the basic-yet-meaningful-to-me values after giving it some time:

I value all life, love, family (chosen-family included), happiness, creativity, mental health, and personal growth. I value learning, building, science, humanism, neurodiversity, and more.

My goals support my values.

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Maybe “goals versus values” isn’t the mind-blowing notion to you that it was for me. But getting clear on what my values are was like gifting myself an endless well of opportunities and ideas; never-ending inspiration and motivation to keep pushing forward.

And even if I don’t meet my goals, my values are there to fall back on.

I know what’s good, and I know how to access what I need, when I need it.

So, what are your values?

Would doing a simple year-end review serve you in recording your values too?

Next, we'll discuss energy-level thinking and planning—a life-changing preparation for me. I hope it can serve you well too.

My best,

Sara

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I didn't anticipate getting Covid—who does? But especially not "long Covid.”

I’m grateful that fatigue and brain fog were the only two issues that lingered since my late-May 2022 infection. But recently the fatigue has subsided, and the brain fog is seemingly lifting a bit.

Now, I’m actively trying to read and write daily again.

It’s been tough, but I’m doing my best, and that’s what matters.

I taught planning and organizing “for success” in my former business, but the pandemic’s surprises left me with years of unmet goals and needs. And after 2022’s continued surprises, I decided a solid, flexible plan (now that I've rebuilt other important routines) is absolutely necessary to continue growing and producing.

And now I'll share my method with you.

First off, in preparation of each new year, I brainstorm what my most important goals are for the next five years.

Since I do it annually, I simplify the goals and confine them to one page.

After, I brainstorm all the projects I want to accomplish in the new year.

These don't have to reflect the goals, however, before moving onto the next steps, note that your “top priority” projects should support your goals.

I say “should” because I’ve found that the only projects myself and others I’ve coached ever actually complete are ones that align with our goals and values.

Dream big, but be realistic.

I’ve found that keeping these lists to a single page—like in the pictured cloud-like format above—infuses them in realism, even when my goals have been grandiose in the past.

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Based on the 5-year goals and listed projects for the upcoming year, brainstorm recurring tasks that support achieving said goals while also completing your projects.

For example, I have:

• [Regularly] attend writers group(s)

• Dedicate time to reading

• Take writing class(es) and/or utilize Skillshare/Masterclass/Hugo House (a Seattle writing instruction hub) classes

• Write 12-16 hand-written (equivalent) pages every weekday

• Walk daily

• Complete daily “brain dumps”/daily reviews/closing of loops

• Write 3 affirmations or at least 1 thing I’m grateful for daily

And so on.

Then review current, active, or ongoing projects.

Ask yourself: What else do I need (to do) to complete them?

Write those actions down (even if some are repetitive) from your recurring support-tasks list.

And be sure to ask yourself if your current projects still align with your (new) goals and projects, or if they’re worthwhile continuing.

I know it’s hard to drop a project sometimes, but if it’s not the time or it doesn’t align with what you want moving forward, it’s better to cut or pause it before you get in too deep.

After, brainstorm personal and family needs or appointments. Include (estimated, even) timeframes.

Say, you're planning a trip to see family in February, and you know you need to schedule a procedure or surgery sometime in the first quarter of the year, as well.

Here are some of my example questions I ask myself in preparation for a scenario like this:

• Did you already schedule a consult? When is that?

• Can you estimate when the procedure/surgery will be? Or, when could/should you request for it to occur?

• Based on forum research, can you estimate how long recovery may take? (In my specific example-case: My right arm and hand are currently almost 11 weeks post-op and I’m still experiencing some soreness, stiffness, and occasional pain. I’ll estimate 12-14 weeks for a full recovery on the left arm and hand.)

  • How will you spend the downtime post-op?

  • How can you prepare in advance for the downtime?

    • Will you take a break? Or will you have, say, pre-written material to share during that period?

Note as many details as you can fathom.

And, seriously, don’t forget to plan fun stuff. This is probably more a note to myself than it may be for you. But if you’re like me, prioritizing fun and social events is a must because my work is fun for me. I’ll completely neglect a social life if I don’t plan for it.

A vacation? A not-so-random day-trip with your family? Parent-child date(s)? Dates with your friend, partner or spouse?

I tend to not plan these things and go years without a proper vacation/well-spent time off.

Then, refine (if necessary) your projects list.

Which projects are priorities (based on your goals and/or your immediate needs)?

You can print and display both activities side-by-side to help you visualize and decide. Then, based on their priority level, break each project and even your events down into actionable steps.

One of my 2023 Projects is to redesign my writing website. It’s low priority for me, but using that as an example: Some steps I need to take are to:

• get professional headshots and photos done

• set new goals and a primary homepage focus for the site

• set a goal with a single, desired outcome for each page

• rewrite the homepage intro

• rewrite the About page

• etc.

I also list things that “might be nice” if the time/energy/necessity exists or comes into existence.

One direct example of that is to potentially redesign the actual site; or even take it off Squarespace and code my own website since I've already riddled the existing one with so much HTML and CSS to make it do what I want that there's really no point in spending the extra money on a higher cost content management platform when a static website is all that’s necessary. (They’re so much faster, too.)

Then, estimate how long it will take. Guess high.

For example, I tend to underestimate how long things take me. Even editing this: I spent the whole day picking up any home project I could find just to avoid editing. I estimated it would take me two hours to snap some photos (on a seriously gray Seattle day…), plus proofing, rewrites, and editing… I don’t know who I thought I was when I estimated two hours, but it’s been almost triple the time at this point. (I completely forgot about the worksheet templates I wanted to make for you.)

A recent tool discovery that is improving my planning and prep is Goblin Tools—a neurodivergent-friendly free web app (check your App Store for a low-cost phone application option).

Under the Magic To-Do tab, you can plug in your project or task, select your “spiciness” level (how much heavy-lifting you need the app to do to break it down for you. Then select the magic wand icon for the AI to break down the project/task into subtasks for you, which each can also be broken down into further subtasks. Then click on the three-dot menu and select “Estimate” to have the AI break down how long the project will take you, roughly. This also estimates each individual subtask for you.

I’ve found that the AI is way more detailed in task breakdown than I would be, as it covers basically every conceivable subtask possible. So you won’t always follow everything. However, it’s so nice to see it break everything down and give you a solid idea of the (roughly) maximum amount of time said project or task should take you.

This tool has been incredible for me!

Here’s the screenshot breakdown of what I just described:

Once all of your projects are broken down, you can map them out in whatever order you choose. But I recommend going by priority level and personal necessity.

For example, I listed out all the major events with dates that I know of or have estimated for 2023.

Based on those timeframes, I can see that January through March is a rough time to get started on anything major. One of my kids is struggling with in-person school and is switching back to online learning, which will require a fair chunk of my attention. Until she’s settled, starting a priority project isn’t a good idea.

I see that over the summer, one of my kids’ friends from Florida will be staying with us for a few weeks. And since my kids will be home already, summer is never a good time for a high-priority project anyways.

Also, if possible, I plan to schedule the dominant hand/arm surgery in October for optimal familial support and recovery.

Basically, 2023 will be a rough year for high-priority projects, so I’m extra pleased that I broke them all down into actionable steps that I can span out over a larger period of time.

So, instead of trying to “write novel” as one of my projects, I opted to “contribute scenes/ideas to novel” as a project.

And if I happen to find myself able to work on the novel project more than I planned for, then great! I can do that as I’m able to, but it’s not set as a firm goal and project within a busy year.

I look forward to the year ahead, but forecasting a few creative deadspots has let me set realistic expectations for myself.

And although this is a lot of information in one post, I hope you can gather some planning tips for yourself within it.

Download the Goal & Project Planning PDF

Next, I’ll share about values versus goals as a palette-cleansing chaser, and I’ll continue with greater project breakdowns and other New Year planning suggestions throughout January 2023.

For now, I hope you had a wonderful holiday season, and Happy New Year!

My best,

Sara

     support my work and | “buy me a coffee” (a one-time tip)

     offer ongoing support and | become a Patreon patron 

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     visit the website | segwrites.com

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I definitely expected to “be back” far earlier than today. But for the first time since my COVID infection in late May 2022, I finally feel like my lingering brain fog has lightened enough for me to write.

Right now, I’m working toward rebuilding my writing habit. I'm also piecing together the hodgepodge of notes and project-scribbles I’ve recorded over the almost-7-months I’ve been on a hiatus, readying to share the next steps with you.

With that, one of my upcoming projects is to remodel my approach to “newsletter” writing.

It’ll be a lot of what I was already doing here before I got COVID and had surgery (unrelated to the former), but more focused and with much more to offer.

The new venture won’t be exclusionary —it’s not designed solely for chronic illness and/or neurodivergent folks. But it will focus on intentional creation, organization, and living that just so happens to revolve around the chronically ill and the neurodivergent. Which means anyone can benefit from it, especially those who want to take life, work, and more a little slower and with more intention.

We'll explore living life to the fullest without guilt, shame, and with as little (unintentionally) self-inflicted pain as possible — no matter your life’s complexities.

SUBSCRIBE TO NEW, FREE NEWSLETTER

I initially created my SEGwrites newsletter to be a space to collect my writing pieces from around the web — not to be its own “thing.” But I forced that without much planning ahead of time.

I didn’t anticipate how drastically my life would change with just a little more information and self-knowledge, but also a lot of health and physical changes all happening around the same time.

Now, I’m leaning in.

Thank you for your patience.

I hope you have a great rest of your Holiday Season, and I’ll write you (for sure, at least) in early 2023!

My best,

Sara

     subscribe to | my free, sporadic newsletter

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     support my work and | “buy me a coffee”

     visit the website | segwrites.com