Aphasia.
Aphasia is a communication disorder that results from damage or injury to the language parts of the brain. It's usually caused by a stroke but can also be caused by other brain injuries, such as a tumour or head injury. People with aphasia may have difficulty understanding spoken and written language, speaking, reading and writing. They may also find it challenging to communicate effectively with others to express their needs.
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 know what others are saying to you. That's what it's like to live with aphasia.
Aphasia results from damage to the brain that affects speech and language comprehension. Frequently, aphasia follows a stroke, but it can also result from a traumatic brain injury; in my case, I suffered a "coup contrecoup injury, which had occurred by the jolting of the brain against the skull and the shearing forces on the brain caused by direct contact from, acceleration-deceleration forces.
The latter type is more common in paediatric traumatic brain injury and more generally caused by motor vehicle accidents associated with high-velocity acceleration-deceleration forces, and, consequently, aphasia. This occurred when a drunk driver ploughed into a parked car I was sitting in one Tuesday morning in 2006.
I'm sharing my story not because I think it is exceptional but because I know it is not. If anything, the telling makes it unusual because so few of us with aphasia can speak about our difficulties.
At least 180,000 Americans are diagnosed with aphasia yearly, 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 mainly in the shadows, maybe partly because so few of us with it, can tell others about our challenges.
Actor Bruce Willis and former congresswoman Gabrielle Giffords are perhaps the most famous people to publicly acknowledge their aphasia. (Willis's diagnosis, it was recently announced, has now progressed to frontotemporal dementia).
In research from the National Institutes of Health, aphasia had the most considerable negative impact on the quality of life of the 60 measured conditions, even more than cancer and Alzheimer's disease.
I'm sharing my experience to give hope to others with aphasia and their families.
A brain stuck in static.
Within days of my injury, I could unstick my tongue from the roof of my mouth and create an odd sound occasionally, 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, or 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.
Gun-control activist Gabrielle Giffords is the star of the new documentary.
I couldn't navigate the smallest space or the slightest 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" "thirsty" or "drink." If I spoke at all, I spoke 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.
