Never Getting "Better," But (Hopefully) Getting Closer
Life with chronic illness, hope, and talking to kids about health concerns.
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I remember 2017 as being the manic year of constant doctor’s appointments and procedures, trying to “figure things out” while I was battling soon-to-be (…1.5 years later) diagnosed Celiac Disease.
And after I cut gluten, I thought that was it: Life, henceforth, was going to be better. Easier. Healthier.
But life has felt like a tinderbox ever since, ready to ignite at any moment.
I’m fortunate in many ways.
My family has great insurance (although private insurance shouldn’t exist, in my honest opinion); we’re financially stable (although our expenses increased almost 40% so far this year, and that’s definitely not sustainable long-term); and we have three wonderful, healthy children who aren’t afraid to share their struggles with us — a far cry from my own childhood of isolation and rejection and silence.
But my health has declined dramatically over the past three-plus years.
My individual disorders seem to be compounding, or maybe I’m just in that confused, whirlwind-state where I can’t tell up from down. And I can’t tell which disorder is causing what inside my body.
I’m scared.
Maybe I’ll never get better. But maybe I’ll get well enough to inch closer toward “better.”
I remember listening to a podcast a while back (maybe it was daytime talkshow The View — something with multiple opinions shared) which mentioned a story about a woman who was diagnosed with breast cancer, and how she and her husband decided not to tell their daughter. They didn’t want to disrupt their child’s education and goals.
The woman and her husband secretly went to all of the treatments and doctors’ appointments; and when the cancer went into remission, they celebrated covertly, keeping the daughter in the dark. Then the cancer returned, and they decided again that it was best not to inform their then in-college daughter.
The ill mother had apparently lost a parent when she was young, and their illness uprooted her life.
She didn’t want to put that burden on her child.
Noble maybe, but what happens when life knocks down the daughter’s door and her parents are no longer there to insulate her?
It makes me think of my mother’s inoperable lung cancer.
I vividly remember my dad driving my brother and I to our family’s business on a Saturday morning while my mom slept in after a chemo session the day before. It was less than a year into my mom’s cancer treatment and he nonchalantly said, “All untreated cancers wind up in the lungs or brain — they’re the end of the line, the ‘kiss of death.’”
I never forgot that. I was a teen with no access to the internet (you drop one F-bomb in a chat room when you’re 12 and you get banned until you move out almost 7 years later…), so I could never verify it at the time, but his statement sucked any hint of hope for my mom’s survival out of me. Every day I stressed about leaving her to go to school, fearing that I’d get called out of class because my mom would die and I would miss getting to see her one last time.
I think it’s why I tell the people I love that I love them as often as it comes to mind, and why I can’t just leave somewhere without saying goodbye to everyone I care about.
What if I don’t see one of them again? What if I never get to see any of them again?
My mom’s cancer took over our lives, but it also brought her and I closer together. We grew together.
I equated that emotional period to tight-rope walking on a razor’s edge, suspended high in the air with no safety net for three and a half years. It was stressful, painful, and depleting.
Would I have wished my parents didn’t tell us? No. But I wish my dad hadn’t been so blasé to two kids whose favorite parent was apparently absolutely going to die from cancer, no matter what.
We got no insulation in my family of origin.
My immediate family shares a digital calendar. Since late 2021, but especially since 2022 began, my appointments have been taking up so much space in our calendar, my husband asked me to make a new calendar group just for my stuff so he could turn off notifications if he needed to. I get it. It is a lot, plus I set up numerous reminder prompts on the events so I don’t forget and I’m never late.
The last week of April, my middle child (they/them pronouns) said, “You have a lot of doctor’s appointments next month, Mom. You okay?” Apparently when I shared the new calendar with my spouse, it automatically added the kids’ devices; so now they see everything I’ve got on my “Sara’s Personal” iCloud calendar too.
I looked at my kiddo for a moment and pulled them in for a hug.
I didn’t know what to say, so I responded with: “It definitely feels like a lot.”
They had a sinus infection all week last week, and one day when I returned home from my gastroenterology consult, I made numerous phone calls to internal medicine and immunology doctors’ offices per the gastro’s advisement after seeing my skin flare in her office and hearing about my systemic reactions to gluten and histamines. After finishing the phone calls, I turned to my husband and shared a couple vague bits from the consultation (vague, knowing Middle was in the room). I thought I had it together, but sharing one particular aspect triggered a crack in my façade. Tears streamed, and I tried to remain as quiet as possible.
I cleared my throat, took a deep breath, dried my tears, and started crafting a message to my doctor, requesting a referral to the only immunologist I could find that seemed to be knowledgeable in the most mysterious area of what I’m dealing with.
After a moment, my middle child called from the couch, “You okay, Mom? Were you crying?”
I can’t hide everything. And I don’t think I should, but I know this is affecting my kids.
Heck, they’re younger than I was when my mom got sick.
Back in 2017 when I couldn’t walk and I’d regularly writhe in excruciating pain from gluten ingestion as an undiagnosed Celiac, my kids were wrecks. There was no hiding anything back then, even in a spacious two-story house where the kids could safely go outside and play in the cul-de-sac by themselves during the day without a worry in the world.
All the worry was inside our walls, cloistered inside my body.
My mom’s hair fell out when she began simultaneous chemotherapy and radiation treatments. She withered away from a big woman to a tiny, frail one. She aged twenty years in one.
I had my learner’s permit and part of my “training” was to driver her treatments. I often had to pull over on the highway or off in a parking lot somewhere so she could vomit.
But I never heard her scream or saw her writhe in pain. I cannot imagine what that time did to my children.
I promised them then that I was never giving up.
I will get this all figured out.
But right now I’m in a holding pattern, unsure of what to say or how to say it, and I just want someone to tell me and show me what to do — how to get well enough so life can go on.
On Twitter/X, fellow Autistic @divergentdawn posted: “Due to being disabled, I have always felt pressure to overcome my difficulties, ‘get better’ and live a normal life like everyone else.
“I have realized today that this will always be unrealistic. It will never ‘get easier.’ That’s okay.”
I commented that I had come to the same understanding that day too. That I won’t give up, but I’d focus on living life, creating, etc., instead of constantly focusing on “getting better.”
“I am disabled.”
I said it out loud for the first time a couple weeks ago.
It’s difficult to acknowledge, and although I said what I said in that tweet, I do want to get better — at least to figure all this shit out — so I can go about living.
I’ll get there. But for now, there will be rest, self-compassion, and more of a focus on personal health than professional growth.
I’ll never stop writing and planning and coming up with “options” for the future, but all my habits and “ideal” schedule I worked so hard on are being forced aside by personal stuff, and the personal stuff needs to take precedence. (And I don’t need the shame of not completing work and meeting deadlines to pile on right now.)
Maybe I’ll never get better. But maybe I’ll get well enough to inch closer to “better.”
Before I go, here are 5 things I wanted to share this week:
This podcast episode from Create Out Loud was instrumental in helping me start sorting my creative goals over the past couple weeks—take my mind of everything going on outside of my creative pursuits. I’ve felt overwhelmed with everything in my personal life stacked atop what I want to do and achieve, and this episode helped ground me a bit. (I’ll write about that hopefully next week.) I also snagged the podcast guest’s book, Find Your Unicorn Space: Reclaim Your Creative Life in a Too-Busy World. It was definitely well-timed in my life right now.
My (edited more and added-to) essay “But You Don’t Look Autistic” was published on Invisible Illness! Welcome new email subscribers who are here because of that piece! It’s so great to have you. 💛
And when I shared the original version of that essay with my Autistic Meetup group, one of the attendees said, “Oh, I’ve been meaning to get that book,” which threw me. So I looked into it, and in fact, there is a book called But you don’t look autistic at all by Dutch photographer Bianca Toeps… which of course I had to buy and am now currently reading.
The line “My body is rebelling against me” caught my attention on Twitter last week, only to discover that singer Halsey is dealing with a lot of what I am too. In the comments, @oliviafiasco wrote: “Practitioners need to be educated about MCAS/EDS/POTS. It’s unacceptable that many of us don’t get any treatment until our conditions progress to anaphylaxis episodes. At that point, it is so hard to get things back under control.” I’m understanding, first hand, how true this is.
“Disability is a matter of perception. If you can do just one thing well, you’re needed by someone.” —Martina Navratilova
All my best,
Sara
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