Sunday, November 6, 2016

It's A Start

Was starting your advocacy journey a hard decision? Were you anxious and hesitant or were you excited and ready to share your story? Tell us how you chose to start advocating for your condition.



This question is about my start. I started with an article in the American Stroke Association's magazine, Stroke Connection. They are hosted by the American Heart Association.
 
Stroke Connection p. 9
The link only goes to the magazine.
The article in on page 9 (8 if you have the actual magazine).

The American Stroke Association was already showing interest. This is where "stroke" and "brain injury" get mixed up in me. I had been driving close to my time of unconsciousness. People assumed the car accident was at fault. Really, I already had a blood clot (tangle of blood vessels called an AVM) in my head that was slowly bleeding. I had an AVM Stroke.

The way I saw it, a stroke is a brain injury. A stroke is no better of a brain injury than hitting your head in an accident.

For this essay, use ABI vs TBI.

I had an ABI (Acquired Brain Injury), from the stroke, and a TBI (Traumatic Brain Injury), from the car accident. Was I supposed to split my head? They are both a brain injury. That first letter was only needed for medical purposes. Now it's used for funding. Let's tear society up with letters.

Where was the association for all the brain injuries that are NOT stroke? Half of my injury is not stroke. Would half not be followed? Of course not, all of me would be studied. I think back to the last hospital I was in. My roommate was the sole survivor of a car accident. It was graduation night for her. Her mother told me how she was going to the dental college and had a friend graduating from high school. If that girl was having the remarkable improvement I was, she wouldn't be picked up by a stroke association.
 

 A friend from Facebook,  Shea Shaw
She reminds me of that roommate.
Her brain injury comes from hit and run. Again, no
stroke association would be involved.

So, I decided to do this on my own. I fell off the radar of The American Stroke Association. I pushed that I had BOTH types of injury. My remarkable recovery would cover ALL of brain injury, not just some letters.



UPDATED 12/3/2016





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