Imagine that you’re trying to talk, but you can’t get the words out — and then, if you finally do, no one understands what you’re saying. And you don’t understand what others are saying to you. That’s what it’s like to live with aphasia.
I’m sharing my story not because I think it is exceptional, but because I know it is not. If anything, it’s the telling that makes it unusual because so few of us with aphasia can speak about the challenges we face.
At least 180,000 Americans are diagnosed with aphasia every year, and it’s estimated that some 2 million Americans have it; it’s more prevalent than Parkinson’s disease, cerebral palsy, multiple sclerosis, muscular dystrophy and Lou Gehrig’s disease combined. Yet the condition remains largely in the shadows, maybe in part because so few of us with it can tell others about the challenges we face. Actor Bruce Willis and former congresswoman Gabrielle Giffords are perhaps the most famous people to have publicly acknowledged their aphasia. (Willis’s diagnosis, it was recently announced, has progressed to frontotemporal dementia.)
In research from the National Institutes of Health, aphasia had the largest negative impact on quality of life of any of 60 measured conditions, more than cancer and Alzheimer’s disease.
I’m sharing my experience to give hope to others with aphasia and to their families.
A brain stuck on static
Within days of my injury, I could unstick my tongue from the roof of my mouth and create an odd sound every now and then, but I couldn’t communicate in any traditional sense. I felt like a human radio pumping out static — with sporadic bursts of clarity.
When I was asked to point to a picture of a teapot, an apple, an elephant, my adrenaline kicked in, my breathing got faster, my heart rate got faster, and I started to sweat. Sometimes I just pointed to my head. The odds of a sinkhole opening within me were approximately equal to the odds that I’d find the right word at the right time, something I’d done with ease before the accident as a professional freelance writer.
I couldn’t navigate the smallest space or the smallest thing. None of the tools I had used before made any sense. Not words or places or names or directions or signs on bathroom doors. It’s hard to navigate when you can’t decipher anything on your desktop or phone and can’t tell anyone that you can’t.
I pointed to a chair because I couldn’t say “chair.” I mimed drinking from a bottle because I couldn’t find the word “bottle” or “water” or “thirsty” or “drink.” I spoke, if I spoke at all, with an urgency bordering on panic. In the first year after the accident, once I began to put words together, I said things like “white stuff sky,” which meant snow, or “cow thing pants,” which meant belt.
My condition still interferes with my life, although not the way it did in those early days. But it flares up when I have to be somewhere I can’t find or do something I can’t do or say something I can’t say.
More than 16 years after the accident, I can have one conversation every two or three days. Then I wilt. I still want to hide my mind, or at least the damaged part.
Recovery and coping
Most of my recovery grew from my own self-devised therapies.
About a year after the accident, I began listening to audiobooks, one sentence at a time. I would pause, replay, pause, replay and try to repeat the words. Although I’m no longer doing that, I can still only “read” audiobooks. I also long ago began writing anything I could recall on any surface I could find. I stuffed scraps in brown paper shopping bags, then began to build a book.
People living with aphasia are the real experts on this often overlooked condition, but we rarely hear their voices. It’s hard to speak up when you can’t speak.
Some things I’ve learned about aphasia
Although some sources give the number of Americans with aphasia as at least 2 million, Swathi Kiran, the director of the Aphasia Research Laboratory at Boston University, says that number represents only aphasia caused by stroke.
The nonprofit organization AphasiaAccess says that, every approximately four minutes, someone in the United States acquires aphasia, and that as many as 4 million Americans may have the condition.
Tests say they quantify cognition, but I would say they quantify only what we can say, which is not the same as what we know or feel. We need words for that, plus neural functions, synapses and soul.
The boundaries between “able” and “disabled” are fluid, not fixed. Sometimes you’re able, sometimes you’re not, depending on what’s going on inside you and around you at any given time. It’s hard to learn your limitations when they change every few moments.
Aphasia cannot be described or prescribed with one set of secrets or tactics or remedies. The damage from aphasia is variable and involves different deficits unique to each person.
The one constant is how hard those of us with aphasia work to achieve even small results.
Judith Hannah Weiss is a freelance writer and the author of an as-yet unpublished memoir titled “Away With Words.”