The Nonstarter Diaries
unfurling some of life's interconnected complexities | introducing article voiceovers (free in this post!) | and a small Seattle-spring photos spread
Last week was interesting.
Last week, I mentioned wanting to listen to my body more.
My Celiac1 diagnosis was the very first nudge in that direction.
I’m embarrassed to admit that, before, I didn’t ever consider that what I was eating could be causing the excruciating lower abdominal pain. To my credit, I saw 12 different doctors and specialists while trying to figure out what was going on with my body (and brain!), and none of them pointed me in that direction.
But still.
As soon as the gastroenterologist said “Celiac Disease. You can’t consume gluten—wheat, barley, rye—ever again,” my entire dietary life flashed before my eyes. It was like my brain automatically downloaded a neuron-infused roadmap, with several dietarily triggered incident springing randomly into my mind’s eye on a reel.
That toast I ate did cause me pain! I wasn’t crazy!
My brain just couldn’t make the connections until these things were brought to my attention.
It’s so fascinating to me.
For the longest time, I thought I was stupid. How could I not make these connections??? They’re so obvious! (Now….)
But many neurodivergent people struggle with poor interoception,2 and discovering that I fall into that camp gave me the gift of heightened self-compassion.
I’m not stupid, my brain just doesn’t have those pathways of internal communication built-in. I have to find them and make them manually.
Everything I do must be done with intention. It can be overwhelming.
If you’re neurotypical or are unsure, imagine having no autopilot for anything at all. Do you need to think about every hairbrush swipe through your hair? Do you need to tell yourself to do every single step it takes to get your body clean in the shower? Do you have to see or visualize your teeth, coaching yourself to move your toothbrush about in downward motions, one section at a time?
For the majority of neurodivergent people, every action is manual and requires a conscious effort to complete.
Beyond telling yourself to “put toothpaste onto toothbrush, now brush,” you literally need your internal narrator to coach you to move the brush around your mouth.
Honestly, if it wasn’t for electric toothbrushes, I’d still be a dental health hot-mess. Seeing how my family’s genetics panned out in the oral department, I’ve always been a diligent brusher (and later: flosser). But with no childhood and teenage dental healthcare, there were some issues in my early oral-care journey that are still costing me today.
I’m somewhat of a nut about oral health and hygiene. Yet, still, with a manual toothbrush I’d often brush one section of teeth, space out, and forget how long I was standing there for, brushing the same spot over and over.
Heck, one day, I associatively noticed Brian would stop brushing after his electric toothbrush pulsated three times. I said, “Do you quit brushing because your toothbrush yells at you about brushing too hard?” (That’s what I thought the three pulses meant….)
Brian teased me, after informing me about five years into my Oral-B electric toothbrushing journey, that when the toothbrush pulsates three times, it means it’s been two minutes, and it’s time to stop.
(Clearly, I never read the instructions. In my mind, it’s a frigging toothbrush. Who needs instructions for a toothbrush? Apparently, I do.)
I thought the three-times pulsating meant, “Lady, seriously, you’re brushing too fucking hard. Be gentle already.” All the two-time pulsates were early warnings, and the three-times was the scolding.
Oops.
Last week, I didn’t associate the gorgeous, blooming cherry blossoms with my increased sinus drainage. But, in an Axios Today™ Seattle email last week, a link had me rabbit-holing, eventually leading me to an article on how humidifiers can help with seasonal allergies. Hoping my sinus issues weren’t a third round of illness, I whipped out one of our humidifiers from storage (cleaned it), and my sinus issues significantly improved after a couple of days.
Every so often, I do figure things out on my own, but it takes a lot of introspection and effort. It’s why I am the way I am, and why I write the way I do here, really.
When I’m introspective, I’m more regulated. When I’m not, I’m consistently dysregulated.
On Friday night, I was supposed to go out with a friend for karaoke.
Singing is my absolute most favorite activity (that I can still safely do—I miss you, bowling!). But even the humidifier didn’t take care of the odd feeling inside my body.
Around two in the morning, my youngest woke me. She was having severe stomach pain, poor baby. Around 4AM, we finally got her settled and set up comfortably on the couch-bed we made so she could be closer to me, and I apologetically told her I had to get some sleep.
(She said she understood, but still… the guilt!)
I woke late, still not getting enough quality sleep. Little stayed home and rested, and I tried to get my brain to work, while also trying to make it stay awake all day….
Around 5PM, I couldn’t take it anymore. I felt unwell, every muscle in my body (that I can note without an anatomical chart) felt tense. My jaw was taut, the back of my head felt like something was jammed between my skull and spine. Finally, I texted my friend and let him know how sorry I was (to cancel for the third time), but I wasn’t going to make karaoke again.
As soon as the message sent, my body produced a flush of relief from head to toe—a wave washing away my discomfort.
What the hell? I thought. I even felt more awake!
I considered texting back and saying, “False alarm!” But as my hand reached for the phone with the intention to do so, those heavy, burdensome feelings began to resurface.
I can’t remember how much time passed, but the foul feelings in my body didn’t return. And I noticed that I felt more awake closer to 7PM than I had the entire day.
I’m severely affected by stress, I wrote. I’m sure that’s true for most people. But in this case, I wanted to investigate why I was so stressed, especially when it seemed to be over doing my favorite thing.
Fast-forwarding, it came down to several things, and each one I ran by my subconscious to rule it in or out.
One, I don’t like the bar my friend goes to. It’s a filthy dive bar (for Seattle, mind you—beer still can cost $8+, and cocktails start around 14-bucks). And it’s also where I got COVID for the first time.
It’s the kind of place that has urine all over the bathroom by the second user, and it only worsens thereafter.
Next, my hearing and sense of smell are incredibly sensitive. If someone is terrible at singing or hits a note wrong or the place or base is too loud, it physically hurts me—it feels like someone is drilling into my skull. Additionally, it’s a packed-like-sardines bar, and frankly, people smell terrible. Whether it’s the natural human smells of someone who worked hard all day, hates deodorant, and went out anyway, or someone who drowned themself in cologne—it’s a sensory nightmare for me regardless.
Plus, my friend is polyamorous. And I’m not. When we went together prior, no one apart from a couple of his friends knew I was essentially his family. Yet, still, there was a hyper-aggressive guy there who acted like my male friend didn’t exist and would not leave me alone for hours, becoming more and more brazen as the night went on. Literally, putting his body between us and getting in my face being the last straw for me.
My karaoke-friend loves that energy and attention, and it’s a part of why he goes to that particular bar.
I loathe it.
Lastly, on a milder level, singing is something I do for me and not for other people. Maybe if I could do it without feeling deep anxiety, but, I’m not a performer—I just want to sing.
It’s hard enough for me to sing in front of friends, but strangers?
I did it, though. That one time. I stood up there with emotion and depth to my voice, frozen in a rigid body that couldn’t move beyond spewing feeling out of my mouth into a microphone.
(I joked to Brian that the only reason why I’d get lead singing roles in school performances and in my brief stint as an opera singer was simply because I couldn’t sing back-up—I was too loud, and at least in grade school they cared more about what our voices sounded like over our ability to put on a visually interesting show.)
I was excited about karaoke, I thought. But, I guess I can’t differentiate “excitement” from “terror” inside my body.
All weekend my stomach was upset. I blamed it on a frozen cauliflower pizza (packaged food and MCAS3 are not friends, but I regrettably waited too long to eat to cook something fresh), but now I wonder if it was really the pent-up stress that clung to me all week long; worsening sinus issues, even.
I wish I could be consistent.
I wish the simplest things didn’t have to be so rigorous to complete.
Within the productivity realm online, we constantly hear that “consistency is key”. I agree, to a point. But what if it’s not possible for some people?
For example, a couple-friends of ours will be celebrating their 15th anniversary later this month. They’re going on a cruise-oriented trip to New Zealand, and I expressed that I’d love to do that—our 15th anniversary is the following year, actually.
The wife said she’d help me plan ours—she loves planning. I said I do, too, but there seems to be a block in my brain when it comes to personal planning. Business? No problem! But personal planning feels like a whole-different, uncontainable beast.
What I didn’t explain to her when she clarified that she would help, seriously, makes me feel like a sad, broken record: I believe part of the block is that I often can’t think that far in advance. I literally have no idea where I’ll be in August 2025—physically, mentally, et cetera.
I lose interest. Something (or several somethings) comes up that makes it feel impossible to be able to afford to do something so big; which makes me not want to bother planning it in the first place, so I don’t feel disappointment when it doesn’t work out.
For someone whose brain hates spontaneity, that frequently is all I can do—some half-assed (half-planned) version of spontaneity, at least.
“Let’s take a trip to Bainbridge Island this weekend,” Brian might say on a Thursday night. At first, I feel like he dropped an anvil in my lap. Often, I would rather not disappoint, so I agree to things. But, still, a day-trip to Bainbridge is something doable for me. Not too expensive, and close enough that if we need to bail, home can be as short as an hour away.
Plus, if something’s planned too far in advance, I’m stressed about it.
If it’s a big event or activity, I’m stressed about it.
Those stresses aren’t less because they’re over a year away. Something being over a year away just makes it all the more trying.
I’ve heard, especially in the ADHD community, that if you have an appointment in the afternoon, all you can do during the day is stay ready for that appointment—nothing else. Otherwise, you risk missing or being late to said appointment. Or, not wanting to go because now it’s too incredibly draining to even consider.
(I mean, it’s why I generally only schedule appointments in the morning: So I can get them over with and hope I can do anything else the rest of the day.)
It’s difficult to consider that some things just can’t be done, though. But I have to dig deep and really think about why that is for me.
In this particular case of planning with my friend, I won’t be a spoil-sport. She wants to help me plan a vacation! She loves planning. What’s the harm in taking her up on it? (Other than maybe the fact that I’m a pain in the ass, and she may finally see that and want nothing to do with me after. But, I’d rather have someone love me for the real me, and not the even partially masked version solely.)
I’ll let her know my hesitations. Heck, perhaps all my hangups with the actual personal planning process are wrapped up in this self-defeating attitude.
(That, and the fact that I never take people up on help.)
It’s been brought to my attention that I can be a bit of a nonstarter—my word. But I don’t have to be.
Last week, I really started listening to my body more. And from it (and probably the reduced antihistamine dosages), my brain is beginning to cooperate more.
I can choose to try.
It’s all manual effort anyway. Might as well take the offered hand wanting to help.
My best,
Sara
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.
What is Celiac Disease?, The Celiac Foundation
I wrote about interoception and Alexithymia in the last post, but in a nutshell, poor interoception is to have “difficulties [that] can cause a host of problems for Autistic people and ADHDers. Not only may we have trouble with hunger and eating, but also emotional regulation, sleep, understanding, feeling pain, knowing when to use the bathroom, and understanding when our bodies have unmet needs.” Read more directly on Neurodivergent Insights.
What is MCAS?, Healthline
Hey, I love your emails/articles They inspire me and help me so much, I like to analyze and figure out things for myself and it’s hard as I’m 100% sure at this point that I’m also neurodivergent but still undiagnosed, but I’m finally officially working on it (a huge procrastinator) but your insights are super helpful, I normally take screenshots and highlights parts of them for later reference:) I feel like I have a lot to say to you sometimes. I’ll just say this now, I think that’s super incredible that you have that much figured out already and I think you’re super efficient considering it takes a lot of effort for the neurotypical person as well in the modern day life to stay on top of things, with all the busy day to day life and all the increased allergies and digestive diseases that were not so common in the past I think because of the cleaner environment back then and now it’s just too much things to handle and I don’t feel like we have to feeling guilty when we couldn’t and chose not to try and do everything perfectly, it’s just not right that life has to be so complicated it’s not always us it’s often that life is getting too much to be able to organize and feel on top of it all, but you’ve probably heard similar words many times before and as you said in your final sentence that you’re allowed to try or something of the sort, yes of course I can see that point too, just wanted to share my thoughts for some reason. :) Thanks for sharing I really love everything I’ve had the chance to read.
Best wishes
- Katya