Writing with Aphasia
Writing has always been my passion, from a very young age, but it is also one of the most challenging things I could ask of myself. That’s what keeps it interesting.
Like most writers, I’ve wanted to be a writer for most of my life. There’s not much unique in that. At eight years old, my first book was about a toy unicorn, complete with illustrations. I spent countless hours of my childhood reading the dictionary, broadening my vocabulary and understanding of language. At nine, I bought a secondhand grammar book and taught myself the mechanics of sentence structure and punctuation. These are not particularly unique things among people who want to write.
Then something happened.
Amy Good, part time writer living in Dublin
I can’t say if it was an acute event or a gradual progression over time because huge swaths of memory just… disappeared. There were things I know happened: I wrote about them in journals or talked about them with friends or family. The memories are gone, though. A few things remain, but in flash memory fragments. Some of that loss is a blessing.
Around the same time, I developed a stutter. Most people don’t acquire a stutter in their late teens. I started having painful lightning-bolt headaches that made it hard to concentrate. I had trouble recognizing faces and often times had to identify people based on their voices or clothing. There were a few instances of visual and auditory hallucinations, before any drug use. All those things I could live with. But most damaging was the aphasia.
Aphasia is a language disorder that can affect a person’s ability to comprehend and/or formulate words. For me, it meant I could no longer remember even simple nouns, like cup, table, curtains or spoon. I had to talk around concepts, describing things until my brain remembered the words, if it did at all. I had to act out verbs before I could recall them. The vocabulary I had so painstakingly learned over the years vanished.
I lost my proficiency in both English and Spanish, and my confidence in talking at all. Stress made things exponentially worse.
Eventually, I taught myself workarounds. I practiced conversations in my head so that when I eventually talked to someone, I could have a set of answers available to me that I had memorized beforehand. I wrote down flash cards of common answers to work-related questions and studied them before my shifts. I relearned my Spanish vocabulary and went back to reading the dictionary and thesaurus. If I had a scheduled meet-up with a friend, I imagined us chatting and prepared topics to discuss beforehand. The aphasia is partially to blame for my dropping out of college the first time and waiting until I was in my early thirties to get my degree finally.
It’s not hard to imagine what a tremendous hit to my self-esteem this was. I’d always identified as being someone skilled with language. A writer. The smart kid. I was creative and talented, according to some of my teachers. And then suddenly, I wasn’t. I couldn’t hold a normal, unrehearsed conversation; it took me so long to formulate even simple sentences that I frustrated the other person and was frequently talked over.
I was so ashamed that it took me more than fifteen years to mention the aphasia to a doctor.
Writing became almost impossible. Despite my workarounds, it could take me hours to finish just one paragraph. I made lists of synonyms to common words that I could keep handy while I fought through something I had once done effortlessly. I visualized scenes as if I was watching a movie so that I could pretend I was simply transcribing them. I set up a treadmill desk because the exercise helped me to focus. I learned to give my mind breaks when it got tired and to switch to another creative endeavor when it got bored. I forgave my brain when it failed and let myself feel proud when it succeeded. Mostly, I struggled. Then I struggled some more. And then I struggled even more.
Some people would give up writing. Why spend hours on a difficult, fruitless task? There are certainly better ways to spend a weekend. But I continued to write out of stubbornness. Eventually, it got easier. I realized that writing gave me a better way to communicate with the world.
The computer never cares how long it takes me to finish a sentence or counts my pauses. I can search through synonyms, antonyms and the wealth of information on the internet to find the word that represents the concept in my head. I can rewrite my thoughts as many times as I need.
Writing will never be as painless and natural as it was before. I may never be as good as I once was. I may never have a big, revolutionary idea ensconced in beautiful poetry and subtext. I keep going anyway. The challenge is what keeps it interesting and worth doing.
Because I’ve had to fight harder to keep going, my love of writing has grown. I’m addicted now.
— Amy Good freely gives away her books and short stories at www.amicgood.com. She overshares on facebook, and twitter.
Category: Being a Writer, On Writing
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Sites That Link to this Post
- Featuring Women Writers on WWWB 2013 - Women Writers, Women Books | December 31, 2013
- Still: Time and Distractions | findingtimetowrite | September 9, 2013
- Author Spotlight: Amy Good | Everything Marie | August 24, 2013
Well done you for carrying on. I really admire your perseverance.
Amy and Laura! I so admire your perseverance and courage! You didn’t give up on your gift. That’s a very healthy response to adversity, you know. Hope you will keep on writing …. what a joy to read about your victory and what a jolt I felt when I realized that many of us give up too soon. @LatelaMary
What a problem for a writer or anyone to have. Your perseverance is an inspiration. You write beautifully. Keep it up!
Thank you 🙂 🙂 🙂
Aphasia is the thing that finally sent me to a doctor.
I have epilepsy, but it had been controlled fine for 15 years. In 2001, when I was in graduate school, I was hospitalized with a perforated appendix, and something happened to my brain, but I don’t know what. I got out of the hospital and I had huge problems with memory. I couldn’t remember words like “home,” so I’d have to say “the place where I live.” I forgot facts. I forgot my address. I forgot how to use the phone.
Most of the basics came back slowly, but I had finished all the classes for my PhD and while I was recovering I forgot everything I’d read and much of what I’d written. I forgot all the French and Latin I’d learned so carefully to get my degree.
Still, I managed. I got by. I dropped out of grad school. I moved across country because I didn’t have a reason to be where I was if I wasn’t in school.
But the aphasia made me feel like a failure. Like you, I’d been smart, creative, a writer since an early age. So I called a friend and asked if there were any doctors who specialized in that. She told me to go to a neuropsychologist.
I made the appointment, but the neuropsychologist told me she wanted me to have a long-term EEG before she saw me (five nights in an epilepsy monitoring unit).
I did that, and on the very first night they discovered that something had happened when I had my infection…for some reason, although you couldn’t SEE my seizures, I was still having them.
Anyway, I’ve had ups and downs, betters and worses, been on a wide variety of meds, but if you haven’t seen a neuropsychologist or epileptologist, I recommend it. I got answers in 2005 (yes, it took me almost four years to get over my embarrassment). By the end of 2007, I’d written a novel. And just last week, I got published.
You can do it. Don’t give up. You’re not alone.
Thank you so much. Your story is so inspiring and gives me hope and I will print out your comment so I can take it to my doctor. Thank you!
Good luck, Amy!
This was heartwarming. Thanks for sharing- I sometimes have issues with remembering words and I describe them and brush it off on being tired, but secretly I worry there might be a bigger issue.
You worked so hard to try and regain your confidence and bilingual abilities. That is inspiring! I hope you keep writing and speaking with confidence.
Thank you so much. 🙂 I sincerely hope that it is only tiredness you’re experiencing, and not something more serious. And I will keep writing if you will! Wait, who are we kidding? It’s not like we could ever stop! 🙂
Amazing story. Amazing achievement. I’m not sure I would’ve had your strength in a similar situation.
Such wise words, Amy. You “may never have a big, revolutionary idea ensconced in beautiful poetry and subtext” (or maybe you will), but I have no doubt that you will inspire many writers to keep writing out of love for the craft. You are inspiring this new writer (at age 47 – smile). Wishing you continued joy in your writing “addiction”.
Such wise words, Amy. You “may never have a big, revolutionary idea ensconced in beautiful poetry and subtext” but I have no doubt that you will inspire many writers to keep writing out of love for the craft. You are inspiring this new writer (at age 47 – smile). Wishing you continued joy in your “addiction”.
Thank you! I’m especially glad my words helped you in their own small way. And good luck to you in your own writing!!
I’m impressed, I must say. Really rarely do I encounter a blog that’s both educative and entertaining, and let me tell you, you have hit the nail on the head. Your idea is outstanding; the issue is something that not enough people are speaking intelligently about. I am very happy that I stumbled across this in my search for something relating to this.
Thank you so much!
Congratulations on how far you’ve come and all the ways you’ve found to keep going and doing what you’ve love to do. You have a wonderful gift, one that you are meant to share with the world. It may not happen the way you thought it would when you were a little girl, but it will happen.
Good luck with your writing! I look forward to reading more!
Thank you! Your words mean so much to me and give me renewed confidence!!
Having a level of passion for something will usually lead to addiction, but I can think of no better thing to be addicted to than your writing. Your personal fight to regain control of something that took over your life is nothing short of remarkable & your determination is to be admired – enormously!
Thank you! I feel very fortunate to be addicted to writing!!
Dear Amy,
This is so touching. You are really a true fighter. If i have been in your place, i could have left fighting. Hats off to you dear.
May God have all the blessing.
with Love
Rajani Arya
Thank you so much for the kind reply! It feels strange to be called a fighter, and please don’t discount your own strength. If you love something, you will fight for it, I’m sure. Thank you again!
I’m absolutely horrified that this happened to you, and in awe that you have continued to work through it. You’re amazing!
I very much appreciate your kind words; thank you so much!
Such determination and LCD for your passion. You are an inspiration!!
Thank you for sharing your gifts.
Do they know what caused the difficulties to emerge like that?
Thank you! I am cautiously hopeful that my message can inspire others who are struggling with writing and finding their voice!
At this late stage, there is no way to know what caused it other than knowing that it was a traumatic brain injury. I have no memory of the triggering event(s), but I have written a bit on my website about my childhood abuse and believe it to be related to that based on the timing. Again, thank you so much for your comment!