Still disabled

I still belong to quite a few stroke or brain aneurysm Facebook pages, 4.5 years after I had my stroke. Stroke is looked on as brain injury – ABI (Acquired Brain Injury) or TBI (Traumatic Brain Injury) - and I don’t ever disagree with that. In fact I absolutely agree with it, because it is definitely something injured inside my brain.

STEPS (Skills to Enable People and CommunitieS) had this blog story printed on their FB page, and I decided to print it in my blog, because there are so many things that the author spoke about which reminded me of myself.

I talk about my stroke and aphasia when I first meet someone. It’s not an excuse; it means the same to me as anyone else I have gotten to know who has had a stroke, even with aphasia.

“I might look uninjured, and mostly act uninjured, but it is an unequivocal fact that I have brain damage.” Brooke Knisley said this; it means the same to me.

“…since my brain damage mostly exhibits itself in subtle ways, it’s easier for even smart people to brush off my trauma as an ‘excuse’ than to put themselves in my shoes.” Knisley said this; it means the same to me.

“I relearned how to …  overcome a paralyzed vocal cord,” said Knisley; it means the same to me. I have aphasia. For the first long months I couldn’t talk at all the way I used to. I often still can’t make conversation.

“Eventually, though, the symptoms of my brain damage faded away,” Knisley said, and I thought that she had recovered. Yet she also said “they became easy to overlook, even if my brain itself was still damaged and healing.” That was me too; my recovery is still ongoing, 4.5 years after my stroke. Except I don’t think I will ever fully recover.

And this was what she said which really got to me, because she even mentioned aphasia. “I often struggled to find words and found myself tongue-tied. I’d mean to say one thing, and say the other, or else smash together two unrelated words into a nonsensical portmanteau. People corrected me all the time, and if I struggled or stuttered mid-sentence, they’d attempt to finish my sentences for me… often incorrectly. For someone who prided herself on her ability of self-expression, my aphasia mortified me.” I think of aphasia as mine, even though I do know that many other people also have aphasia.

I really hope you will read this, because Brooke Knisley’s story is so much like mine. We had different causes for our brain injuries, but they are so similar.

So similar.