one year of arm stuff

They found an almond-sized growth on my radial nerve above my elbow in my right (dominant) arm, and in october 2023 they removed it and grafted in a sensory nerve they took from my right calf. I have been slowly regrowing my radial nerve since then. The growth has turned out to be a benign medical anomaly, and while there are no current clear explanations for why it happened, no one seems to think I should worry about it happening again anywhere else. Just, random chance took out my dominant hand.

Maybe I was getting too powerful.

back in 2016/2017 I noticed some weakness in my right index finger – it wouldn’t extend (straighten) as far as my other fingers. At the time I was about eight years recovered from some serious RSI in both wrists that had affected my range of motion, and I assumed this was the same or similar flaring up due to an increased freelance art workload/a kickstarter/et cetera, and simply stretched my way through it.

in 2019 i was doing physio for an upper back injury and asked about it, as the finger was still weak, and we started rebuilding some movement, loosening up the knuckle joint, etc. we didn’t get to do much tho because I broke my ankle catastrophically and had to redirect my energy to relearning how to walk.

in 2022 I was finally done acute ankle recovery and asked another physio about the weak finger extension, and she and I went through a few months of me trying to rebuild strength in it. At this point it was clear that the weakness also impacted my middle finger, but that was the only symptom – there was no pain or any sort of discomfort.

After a few months showed us that there was no progress being made, the physio recommended I ask my doctor for a peripheral neurology assessment, because it seemed like I had maybe some nerve injury or compression happening somewhere in my arm that would cause this.

September 2022 I saw the neurologist, who spent two hours with me doing all the tests, only to say “that’s weird. get an ultrasound.” By December 2022 I’d had an ultrasound, MRI and CT scan of my arm and we were quite sure there was a growth much farther up my arm.

February 2023 I was meeting with a peripheral nerve surgeon; he assured me there was no reason to think this was cancer, but, they were taking it seriously nonetheless.

In May they did surgery to see if they could remove the mass without damaging the nerve. Turned out the mass WAS the nerve, though, so it was back to square one while the surgeon explained nerve grafts and tendon transfers and so forth.

October 2023 I had the surgery to remove the growth and a few cm of nerve on either side of it, and to graft in a very long piece of nerve from my right calf.

It went well!

The nerve they took from my calf had no motor function, just sensory, and so doesn’t affect my movement, but it’s two hefty scars on that leg at the top and bottom of the chunk they removed.

The nerve they removed from my arm has been to every lab in Canada that might know something about weird nerve growths, now, and they have found nothing wrong with it, except that it had grown there in the first place, functionally destroying the use of that nerve slowly over eight years.

So neurology covers the brain and nervous system, right? And the brain and spine are the central nervous system, so the limbs etc are the peripheral nervous system. A peripheral nerve surgeon is not a brain surgeon – in my experience they are more likely to be a plastic surgeon, a term that encompasses an enormous amount of lifesaving medicine despite what television may have taught you.

Two facts for you:

• firstly: what exactly happened to me is so rare that in the center of healthcare and cutting edge medical science in canada, I still can’t find anyone who’s ever seen anything like it before!
• but, secondly: whatever IS causing you problems is still real and still needs to be dealt with; if I could offer one piece of advice from my journey it would be to ask for help sooner than later, and not to be satisfied or give up if things don’t improve on the first try.

I let this fucker grow in my arm for six years before I had the space in my head and my life (and the insurance coverage for the physio) to really chase it down. I don’t know how finding it sooner would have changed anything; I don’t know if we COULD have found it till it was big enough for me to palpate under my brachialis (read: feel with my fingers where it grew underneath the muscle under my bicep). I am doing a lot of Accepting that This is the State of Things and trying not to chase regrets backwards; I know that’s a trap. But for advice: feeling weird? Get it checked out if you can.

So, first, a review of the facts so far: as of October 2023 they had cut out a piece of my radial nerve and sewn in a piece of my sural nerve, and I had begun the 2-3 year recovery process. The surgeon had informed me that first the nerve needed to grow over the removed area – the grafted nerve wasn’t just a live wire the signal would instantly shoot down – it was more a track laid for new nerve growth to happen on. And nerves grow about an inch per month; and they’d taken over 4 inches of nerve out of my arm; so they didn’t expect to find out if that connection had regrown for about six months; after which the nerve would continue growing down my arm, inch by inch, month by month, slowly reconnecting first one and then hopefully many strands to the various muscles it was responsible for.

Unfortunately, nerves that are not receiving signals are also prone to dying back, and motor nerves die back permanently, so we were starting a race between the nerve growth and the nerve death.

Remember that I was already feeling weakness in my fingers before all this surgical intervention? Well upon examination they found there was already some amount of nerve atrophy in my radial nerve below the elbow – in fact there was even muscle atrophy in my extensor muscles on my forearm.

So the surgeon was very up front with me: we were not likely to be able to regrow nerves that were already nearly gone. I don’t expect to recover any of the function I lost prior to 2022. We are hoping to recover most of the function that i had the day I went in for surgery, but there are no guarantees. We took the growth out because there was a chance of saving my wrist and elbow function from it if we did it now, whereas waiting till the growth fully eclipsed my radial nerve meant that the nerves downstream would likely be fully irrecoverable.

If I do not regain nerve connection enough for a basic level of function in my hand, we will look into a tendon transfer procedure. That’s the potential third year of recovery. It would entail detaching one of the flexion muscles from the tendons on the palm side of my forearm and reattaching it to the extension tendons on the upper side of my forearm, giving me muscle power to extend everything, but also forcing me to learn to fully rewire my brain. I’m not personally SUPER excited for that challenge, but if I need it I need it, y’know?

God, I am actually having trouble staring this in the face.

Recovery has been so fucking weird, guys.

And I thought I knew about recovery!

If you did the math, that was three years of wrestling through ankle recovery – two surgeries, 14+ pins went in and then came out again, I developed bizarre neuralgia flare-ups, I did the whole six weeks in a cast/boot twice, 18 months apart. Don’t break your ankle three ways, friends. Do not recommend. Real bad fractures in your legs are awful; there’s a really hard transition from walking to not walking, and it can take a lot of pain meds to get through the first week or two while your bones scream about having to reknit themselves. Physio afterwards was hard, humbling, frustrating, boring, and very high-stakes. Going through the world in a wheelchair, on crutches, with a cane, was a whirlwind crash course on all the internalized ableism I had, and a pretty intense confrontation with the brutal inaccessibility of our modern landscape.

But no one told me I might never walk again. We all knew I’d walk again eventually. I’ll never run again, and stairs will be kinda sketchy forever thanks to permanently lost range of motion in that foot, but I always had a date on the calendar that said “start walking again”. That date was amazing.

And while there were some very very real horrors inside broken leg recovery (technically one of the three breaks was not in the joint, hard to say if ankle or leg break, fuckin i dunno) I still had all my comfort skills: drawing; writing; crafting; videogames; I could chop vegetables and brush my teeth and open jars and use my phone without having to worry about it. I played hours and hours of breath of the wild with my foot in a cast elevated above my heart; I made hundreds of paintings on my ipad. I wrote a novella. I typed constantly.

Things were hard! But I knew when they would stop being as hard, and even while I was scared to go down the front steps of my house on crutches (they were sketchy steps, in my defense) I could fully distract myself with all these skills I had spent a lifetime learning for exactly this purpose.

Don’t miss the pain, though. Fractures are not fucking around.

yes, yes, I’m getting to it.

Fact is, there are no promises here. My right, dominant hand will never be the same. We triaged a degenerative condition, we aren’t healing an acute injury. This is so, so much harder on my brain, just as a framework for recovery at all.

Right after surgery, I spent two weeks with my lower arm in a cast.

The incision was above the elbow, but for the nerves to heal, we had to hold my wrist still. You can really yank on your radial nerve by bending your wrist — don’t try it, it feels bad.

So I had a huge bandage on my bicept and a cast on my forearm.

I remember waking up from surgery and mentally reaching out to see what state my hand was in. I could feel my fingers moving a little and briefly hoped they’d gotten the growth out without severing the nerve!

But they didn’t. That wasn’t a possibility and I knew it.

But the thing is, my wrist and fingers still had all of the flexion muscles working fine – I could curl my fingers and thumb into a weird fist, and I could bend my wrist down with full force ( tho I didn’t try till the cast came off) – because those nerves were unaffected. I just couldn’t uncurl anything. And for about six months that was the state of things.

After getting the cast off, I got fitted for a thermoplastic brace. The brace holds my wrist in mild extension, because you need your wrist angled up a bit to give you the most power in your grip. I also got a fabric brace with custom-bent metal stays to do the same thing, but the thermoplastic one is stronger and better able to stabilize against my flexion muscles. For six months I lived, breathed, ate, drank, slept, showered, spent 100% of the time in a brace. If I wanted my fingers to uncurl, I used my other hand or the environment to do it. if I wanted to hold my partner’s hand, it was a three-hand process. And for most of that time I didn’t use my partially paralyzed dominant hand to do anything more glamorous than stabilize whatever my left hand was trying to do.

I can’t really talk about this elegantly. It fucking sucked. Everything – and I mean everything – was suddenly harder. Switching dominant hands is a years long thing and the science I read on the subject says no one ever does it fully, not even after decades of living with an amputated dominant hand. There was no chance of settling in in that first six months and getting suddenly good at brushing my teeth with my left hand. Like, despite doing that multiple times a day for the past year I’m definitely still not good at it!

Everything was suddenly disorienting. What hand opens the door? What hand turns the key in t he lock? Wait, which way locks the door again? I got confused about what way to rotate lids to get them on and off because I was doing it all backwards.

And then there’s all those comforting hobbies I listed above. They all became instantly fraught. Drawing. Writing. Typing. Sculpting. Crafts. Collage. Gardening. Baking. Any and all therapeutic cleaning. Using a broom is hard! And all of the floor stretches and home yoga and such that I had been doing for self maintenance before this surgery suddenly was overwhelmingly complicated, because my right arm was a flimsy husk of its former self AND was in a fixed wrist position due to the brace. How, pray tell, does one downward a dog in this condition.

Pouring the kettle was complicated.

Cutting up my own food was complicated.

Using my phone was complicated.

Getting dressed was complicated.

All my shoes now are slip-ons; shirts and coats that don’t fit over inches thick braces and their attendant padding just haven’t been worn. I stopped driving – I couldn’t put my right hand on thes steering wheel without the help of my left. My partner still has to open many bottles for me. It’s been a big shift.

I felt like I had to give up a LOT of independance, way more than I expected, and suddenly I had no idea what hobbies were or if any human had ever enjoyed one in the history of the world. Anything that required my participation was extremely, infuriatingly, disorientingly new.

Okay so this is as good a place as any for this disclaimer: I am sharing my specific personal experience with disability, not speaking to the experience of everyone with any related or similar-sounding disabillities. I have lived with this particular disability for one year; i do not have a lifetime of experience, and additionally, I have been told by my medical team that I need to keep pushing myself to use my recovering arm as much as I can, to help my brain and my new nerves connect properly. I have not had the time and am not supposed to go all in on adapting my whole life to this condition, as we expect my condition to change. This is a unique and different experience of the loss of use of one’s dominant hand and cannot be treated as universal. People are experts in their own conditions and experiences and don’t you DARE use what I write here to make another disabled person feel like shit.

nerve-graft georg is an outlier adn should not be counted

But also I am faced every day with the infinite depths of my own internalized ableism, and I know for certain that it laces its poison into everything I do and every thought i have about what I am going through. If I am putting things in this essay that actively misrepresent you, another disabled person, please do reach out and tell me so I can try and make it better. the balance between my personal experience and the general inclination of the public to universalize any new fact they learn is a tough one to keep always.

Okay, with that out of the way, a few thoughts on adaptive tools, lifestyle changes, etcetera:

They are at least 50% awful, marginally useful, hugely frustrating, and deeply paternalizing and condescending.

There are also some real miracles out there, amazing devices and tools and software and techniques and so forth!

And almost none of it is easy to use right out of the gate. Everything has a learning curve. I have constantly been doing the math on how much time I can afford to spend on learning something vs how much time it will save me once i know how to use it, especially in the changing context of my condition and recovery.

For example: one-handed typing.

Since I knew from May that I would be going into a period of left-hand-dominantness, I had five months to start training myself to function with my left hand. One of my biggest concerns was typing. Prior to my fingers growing weak, I had been a 140word-per-minute typist. I could touch-type at a high speed with good accuracy still and it was a huge boon to me professionally in my admin-heavy dayjob, and personally in my text correspondence and self publishing and self promotion practices online. I would have said I could type almost as fast as I could think.

So the first order of business was figuring out how fast I could get with just my left hand. And I started the journey down the rabbit hole of one-handed keyboard approaches.

This is where a key point from my disclaimer should come back to you: we expect my condition to change. While I may never type at 140wpm again, I did hope to bring my right hand back to the keyboard eventually. And I didn’t want to throw out all the touch typing knowledge that I already had – the left hand wrangles a LOT of typing and a lot of keyboard shortcuts and being able to do those without looking still had some benefit.

So right away I knew I wasn’t interested in a bespoke keyboard layout.

Which is good, because as far as I could tell, they cost around $2k canadian on average.

And they all have their own unique different key layouts.

And they all seem to be made by companies less than ten years old, meaning there’s no way to know if they’ll exist to make a replacement if mine is lost or broken in the future.

And actually this all seems really fucking stressful? No transferrable learning between them all, twenty different layouts out there, and almost none made by major reputable keyboard companies? With something as core a skill to me as typing, the thought of relearning it from scratch only to have the tool I learned go obsolete, locking me into a cycle of having to restart over and over and over again…

And additionally, I also wanted to be able to type at a friend’s house on their keyboard. I want to be able to function on the standard keyboards I can expect to encounter out in the world. That felt infuriating to give up!

But then again, some of these layouts looked ingenious. If this was something I was at all able to think of as a fun experiment, I would have loved trying a few different layouts, especially the chord typing stuff. That sounds so smart and efficient! So ergonimic! So cool! Such a fun thing to investigate!

But financially and emotionally I did not have the budget for that angle.

So I committed to learning to type one-handed on a QWERTY keyboard. I’m not the first and there’s a lot of great resources out there including typing training! And one thing people talked about in their discussions of this was wanting smaller keyboards, so that it was easy to reach from A to P with a single hand. That made some sense to me, so I started looking into smaller keyboards.

Well the internet would love to sell me a 60% sized handbuilt custom switches beautiful keycaps gaming/mechanical keyboard! For $400+!

And it turns out that’s actually not even solving my problem – most keyboards online labled as “small” are smaller because they are missing keys (such as the numpad) not because the keys themselves are smaller and take up any less space. Trying to find a keyboard with a reasonable distance from A to P turned out to be a huge quest! In the end I settled on a Perixx mini usb keyboard; I can’t quite reach A to P with my pinkie and index fingers, but nearly, and it was better than anything else I tried.

So here you can see where despite this whole situation knocking me on my ass emotionally, I’m still operating with both enormous privilege – I expect to recover function, so I don’t NEED to fully adapt to one-handedness; and a fair amount of internalized ableism – I don’t WANT to use the weird keyboards, I want to use the “normal” keyboards that everyone else uses, what do you MEAN the specialized keyboards aren’t given the same mass market support, etc.

And that, my friends, has been the arc of recovery for me. The huge emotional rollercoaster of facing this new disability; the true but HOW true fact that I will be less disabled in this way in a few years; the fear and frustration of how I interface with the world changing; the internalized ableism that resents this change and is also, and this is the kicker, extremely embarrassed by it.

Learning to type one-handed was hard. I worked hard to get to half my prior speed and my accuracy was shit and it was really hard work on my left wrist and arm. I used typing training, and when I went back to work I just sort of brute-forced it, until I was able to bring my right hand back in a one-finger hunt-and-peck way.

Unfortunately I didn’t get to focus on the typing, though, as I had to relearn how to do, as mentioned previously, everything else as well.