Scalpels, and pants-less days ahead

Update, some light ribbing, and medical bullshit RE: fat people and women.

Mar 21, 2023

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.

It’s not any old numbness. It’s a deep pain—like my hand is in a noose and some 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.” Before, 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 verbal sentence, let alone “write” paragraphs and full pages. Sometimes I shared 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 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 me. 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 critical to.

My biggest fear, though, is that I’ll have to relearn how to write by hand again—an activity that’s been 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 at 36, I’m tired. And I frigging hope this might be the last surgery I have to have.…

Some Housekeeping

As an update for paying and even non-paying subscribers:

I have pre-written posts for the predicted major recovery period. But there’s a chance that it’ll be a more difficult recovery than I expected.

It’s been a week since my 6-month, post-op mark on my right hand and arm's surgery, and my re-attached thumb is still mildly sore from… well, I’ll skip the details for the squeamish. (“Re-attached thumb” might be descriptive enough.)

If recovery takes longer than the allotted 6 to 8 planned-for weeks, I’ll pause payment subscriptions for the remainder of my healing time. And will update you accordingly (even if it’s a single-hand-typed update, or my husband or one of my kids can type for me).

What that means is: For those of you who’ve contributed 12 months up front, you’ll essentially get a however-many-months extension to your subscription (i.e., you won’t pay for nothing—whichever way you want to look at it). And if you’re contributing month-to-month, the automatic withdrawal will pause for the downtime period. Meaning, your automatic withdrawal won’t happen until I return with fresh posts.

Thank you for your patience and understanding. 💝

Moving on.

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, after my right hand and arm surgery, that he’s been working with EDS patients at the start of his own office 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 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 responsibility as women to not get pregnant! (Sarcasm)

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.

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

For the past couple 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. But, yeah) = not an easy experience. I mean, I couldn’t even get pants on for the first almost-month post-op.

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

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

To start, I'll try typing without my left thumb for the last few weeks after I get the surgical cast off.

And, I’ll also (re)learn how to rest.

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

Thanks, again. And I'll see you back here next week with a post on rest and pacing.

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.

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