• Sophie Russell

Writing with Disabilities

I should be rewriting my blurb for Stroll into Love, but I suck at writing blurbs for now, and I’m actively avoiding it. I already matched my socks, went through my junk mail, and talked to my mom—we tend to have long conversations—so, now, it’s time to write this blog, which I was also actively avoiding, but I’m avoiding it less than the blurb.

This is probably going to be the first in several blogs of this nature, and these are difficult for me to write. Not only am I allowing readers in—like really deep in—but I tend to smile and laugh off some of what I go through, because that’s all I can do. Writing this is neither smiling nor laughing, so it’s tough.

I mentioned in my intro blog that I had a wrist replacement and underlying issues are making the healing process super slow. That’s the short explanation.

Time for some science, so you can get a more well-rounded explanation.

In your forearm, there are two bones: the radius and ulna. There is a joint between those bones, just before your wrist, that allows you to flip your palm up to face the ceiling or down to face the floor. Those motions are supination and pronation, respectively. That joint—distal radio-ulnar joint, aka DRUJ—is necessary for supination and pronation. There are lots of little bones in your wrist, and lots of little ligaments connecting the lots of little bones. In my right wrist, I tore one of my ligaments—smaller than a postage stamp—and had surgery to repair it.

But I didn’t heal.

In fact, that ligament, more ligaments, and some other tissues were “disintegrating,” to directly quote my doctor. One of the things that disintegrated was what held the DRUJ together. My ulna—the bone on the pinky-side of the forearm—was sticking up a good half-inch, and I couldn’t pronate or supinate.

So, in February of 2020, I had another surgery to insert a prosthetic into my ulna to create a synthetic joint. That picture is not an X-ray of my wrist, but it’s basically what my wrist looks like, now.

I have regained some functionality, but motion and strength are ongoing hurtles. My muscles atrophied in the year+ that I have been braced and less than mobile. Also, the rod in my ulna isn’t completely stable. This is NOT my doctor’s fault. My bone is not growing to attach to the rod to hold it in place. It’s not unexpected with the underlying issues I have—more on that in a mo’.

So, I have this huge rod swiveling around in my ulna, which is more painful than it sounds. Working on the computer for more than ten minutes is impossible, because of the pain.

I bet you are wondering how I typed, edited, and self-published a +100K word novel, built a website, write a blog, send out a newsletter, run a Facebook group, run a MeWe group, and write even more, aren’t you? Most of it I did single-handedly, in the literal sense. In the metaphorical sense, I had tons of help from my beta readers, my editor, Roomie, and others. But the typing I did nearly exclusively with my left hand.

I am a leftie, but it took a while to become proficient at typing one-handed. Even now, I struggle, but through sheer force of will—and to combat feeling utterly useless—I fucking did it.

The only problem is that the DRUJ in my left forearm isn’t stable, and surgery is inevitable. We hope to take palliative measures to prolong my time before surgery, but it’s painful.

Yet I still write.

After finishing my first book, I knew my calling. I ran from it for a long time, but I can’t avoid it anymore. In my soul, I am a writer. So, what do I do?

I work around my pain and disability. I offer myself reasonable accommodations, and they look something like this:

  • Nuance Dragon Professional software that converts speech to text and has a customizable dictionary. As a live voice captioner, this is what I use when I’m working. It’s just unfortunate that captioning requires a lot of typing as well. When you see captions for news, sports, TV shows, etc., if it’s not done by a stenographer, they are using Dragon and typing. Nora Phoenix also uses Dragon, and once you get used to it, it’s fucking powerful. It also allows me to work hands free. It’s still slow, because I’m more visual than auditory when I write, but it’s a work around. Bad news is that I usually work on my Mac, and Nuance doesn’t offer Dragon for Mac, anymore. So, I splurged and bought a Lenovo for business purposes. I just hope I don’t break it like I have every other Windows machine.

  • A split keyboard. It was expensive, but ergonomic keyboards didn’t allow me to hold my hands in a position that works for me. A mounted split keyboard, however, does. I’m still limited to the amount I can type, but when I have the energy and less pain, I can do a good half-hour.

  • A free app that converts handwriting to text. You have to write kind of neatly, but it’s good for when I can’t type, but have the ability to move my left hand and don’t want to exhaust myself typing one-handed.

  • My iPhone has a notes app that I can type on with just my thumbs. Aside from Dragon, this causes me the least amount of pain. A majority of my Christmas collaboration is being typed on my iPhone, as is Stumble into Love. Android probably has a comparable Notes app, for those of you who are interested.

  • A vertical mouse. Working a trackpad is super difficult with my issues. A standard mouse is impossibly painful. A vertical mouse keeps me in a neutral position, but I still can’t do much mousing.

As you can see, this is a lot of working around. It’s tough, but I’m kind of used to it with the underlying issues that I have.

Now, for the underlying issues, and another foray into science.

Your body has lots of different types of tissues made up of many different types of cells. Stomach cells are different than bone cells, which are different than nerve cells, which are different than muscle cells, which are different than heart cells. One thing that these tissues have in common is collagen. Collagen is literally the building block for your body. Cells need something to attach to, to grow. That’s collagen.

Guess whose collagen is messed up?

Yup, mine.

I have Ehlers-Danlos Syndrome, and my collagen is too stretchy and flexible. It’s not structurally sound. Because of that, my joints pop out of place, my tissues are slow to heal, my muscles spasm a lot trying to keep joints in place, and I deal with pain every single minute of every single day. Some days are better than others, but as I get older, the problems are getting worse.

There are also a lot of comorbidities with EDS, and I have several. Dysautonomia, POTS, Celiac Disease, and Reynaud’s phenomenon are just a few that I have to deal with.

I don’t tell you this to make you feel sorry for me—those of us with disabilities don’t just fucking hate pity, we abhor it—I tell you this to give you some perspective. No matter what I do, I’m in pain. I battle my body every day to try to be a functioning person. Surgery for my left wrist is inevitable, and it’s not going to be long before more joints need attention, too.

**I’m betting shoulders, next, but my knees might need some more work before long. Who wants to start a pool?**

Anywho, I have all of this—and some other limitations that I’ll touch on in the future—to deal with, yet I still write. I still create. Why? It causes me pain, so why would I do it? Well, I’m in pain regardless if I’m writing or not. And when I’m not writing, my soul hurts. Even though I write super-duper gay romances, I believe these stories are the manifestations of myriad emotions I feel, experiences I’ve had, and longing I possess. My characters are loud, and scrambling to come out of me. And come, in general, because I like to torture them. I spent years trying to ignore them, but it was ignoring an integral piece of me. When I finally embraced that piece, it was like I had come home to myself after being homeless all my life. I can’t not write. Even though it physically hurts me.

I just need to find a way to mitigate the physical pain and damage. The accommodations I listed above are a good start, as is the fact that I can take my time writing. Quick motions are dangerous for me, but writing is a slow process. Even if it hurts, taking my time to do something is good practice.

I just want to ask you, though, is there anything you would do despite the pain it causes you? If so, what? When are you going to do it next? What is it that your soul is crying out for you to do? Do yourself a favor and go do it. It’s worth the pain.

**I just want to note that I don’t do the whole iPhone is better than Android—or vice versa—debate. I have bad luck with Android phones and Windows OS. They never last two years for me. I’m a walking—well, hobbling—gremlin with electronics. So far, Apple has thwarted my gremlin tendencies, which is why I use Apple products. You may be an Apple gremlin, so carry on. Everyone has different needs, and different products meet them.**



#writing #writingishard #disablities #EhlersDanlos

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