A Writer’s Journey to Aphasia and Back Again. Sort of.
5 min read
I had always thought if I had a choice between being able to speak or write, I would choose writing. I’ve never had another job besides writing. I communicated mostly through text and email. I never called people. I didn’t talk if I didn’t have to. If I couldn’t write, what else would I do? Unfortunately, I wasn’t given a choice.
Struck Down by a Stroke
In 2014, at the age of 43, I had a stroke while at the grocery store. My doctor thinks it was a fluke thing. I was getting over the flu. I coughed or sneezed, and it blew out my carotid artery. When I awoke, I had a racquetball-sized hole in my brain, and just like that, I couldn’t read, write, speak, or even understand language – I had aphasia.
When the doctors told me what had happened, in my mind I interpreted it as if there was just something wrong with my sinuses; once they cleared up, I would be able to speak again. I soon figured out the brain doesn’t quite work like that.
Writing on the Wall
It took a month before I figured out I couldn’t write anymore. I had been blaming my partially paralyzed arm when I posted something on Facebook. My first try was something like, “xmfty mgdtv”. I don’t know for sure, because the next day I tried to edit it, and accidentally deleted it with my bum hand. I couldn’t spell anything over one-syllable, and frequently, not even then.
To not be able to write… it was horrifying. I had to get it back. Just to be able to text, I would settle for that. But my goal was to get published again. Aim for the stars and land on the moon, I always say. Nobody told me I couldn’t get published, but I think they were humoring me.
At first, I shared articles on Facebook with comments like, “Nice,” “Ha-ha,” “Yep,” “WTF?” Eventually, I worked up to two words. I started playing Words with Friends, and used other therapy apps for people with aphasia. One app had you put these phrases in order, and I discovered I couldn’t even do basic grammar.
The New Job
I saw my therapy as my full-time job. But when I say “full-time,” I mean that I devoted the whole week to it, not that I did it 40 hours a week. I could only write for 15-30 minutes at a time, maybe twice a day, and then I would have to rest.
Strokes affect everything, in ways you can’t imagine. If I was just learning to speak, that would be hard enough, but a stroke affects your energy levels, your attention, your ability to understand, to walk, to feel temperature. Everything.
Usually, speech therapists wouldn’t focus on writing for some time, but I kept chomping at the bit. So my therapist had me listen to podcasts and summarize them with three sentences. That simple task took all week to do. I would write a few words, take a break, write a few more, take a break. What’s more, I used to type at about 60 words per minute with 95% accuracy; now, it was difficult to hunt and peck two words a minute, wrong.
Since I could read fairly well by that point in my recovery, I could edit my own paragraph. But by the time I had the mental energy to edit, I had forgotten what I was writing. One of the frustrating things about aphasia is that you can see a word, but not be able to say it or spell it–at all. I would drop articles, use the wrong tenses, use the negative of what I meant (“can” instead of “can’t”), and sometimes, just drop entire phrases.
Slow but Steady
I kept going, one word at a time, then two, a phrase, and then entire sentences. I learned to spell one-syllable words, and then two, and three (although those still give me trouble — the middle syllables get me). After a year, I was able to write a paragraph, and made it a goal of writing 100 words every day. Between exercises and worksheets, that goal took everything I had; it still does.
I still have a long way to go. I recently read that the science fiction author Jim C. Hines is leaving his job to write full-time because he earns enough writing 1,000 words a day on his lunch hour. I’m now writing about 100-250 words a day. I’m typing about 10 wpm at 40% accuracy. I have to edit much more. So, at best, it takes me a week to produce what Hines writes in one lunch hour.
Is it worth it? I ask myself that question a lot. It will probably take a year or two before I can write in a full day what Hines produces during his lunches. If another stroke survivor would ask me whether it’s worth it to work this hard to improve the ability to write, I would say, “How much does it mean to you? You might want to devote your energy to talking better, or using your hand. Because it takes a lot of work, and I wouldn’t have done it unless it meant a lot to me.”
When I was asked to write this blog post about my “success” learning to write again, I said I didn’t know that I was successful. The only way for me to judge whether I still “had it” is for an independent editor, who has no idea I have aphasia, to pick my story over those other 100, 200, or 800 stories they get a month. With anyone else, a compliment of my writing comes with the unsaid “considering” tacked on the end. This post? It’s great…considering.
However, the day I started to write this, I got my first acceptance letter since my stroke. A small publication will print a short story I wrote after my stroke. They paid me $5. Yet, it’s the highest return on any story I have ever published.