Aphasia

Most of you know that I have aphasia, a communication disorder that is really debilitating, but that I am coping with.  I was afflicted with aphasia when I had a stroke about two years ago.  As I've written about before, I had rampant diabetes and didn't know it.

Anyway, I'm writing a book about it.  Here is the first part:

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This book is difficult for me to write—not because I don’t know what to say, but my thoughts on how I want to express myself are all jumbled up inside.  Sometimes, I don’t have any thoughts at all, and that is the scariest.  I have aphasia, you see, and that is fairly normal for a victim of this awful disease.  Trapped inside your own body, unable to communicate with the outside world is what it’s like.  You’ve got things to say, you’re sure of it, but they just won’t come out.  And, after a while of not speaking, you kind of grow accustomed to it so you quit trying.  Then, it devolves into a vicious circle that ends up with you just giving up.  You learn to say simple things like “yes” and “no” and “maybe,” but nothing else comes to your mind.

But I could drive.

Three long months after my stroke—it seemed like three years—I was allowed to drive.  That’s one thing you don’t think about, that there is some kind of physician network that secretly sends a message to the state government that yanks your license the minute you have a stroke.  Your ability to drive a car is effectively truncated.  You can’t get a license again until you get clearance from your doctor to take an exam, a driving test, that is, just like when you were a kid.  Of course, I hadn’t taken an exam in a long, long time and what if I flunked? 

And, oh no, what if it was a written test?  My God, my handwriting—I could barely write.  It wasn’t my fault, I had a stroke, writing was extremely hard for me.  Truth to tell, my handwriting was not that good beforehand, but now it was like an eight-year-old was doing it.  But I was lucky.  The driving test was divided into two parts, one where they grilled you and tested you (verbal), and the other where you drove a car and they monitored you assiduously.

It was hell, but I passed.  To this day, I don’t know how.  Muscle memory played a large part in it, I suppose, because without that as a causative agent, I just don’t know, but I think that I would have failed.

Driving was what set me free.  I could go anywhere I wanted without having to talk, and that was liberating.  I could listen to the radio, blast it out, turn on the talk shows and praise God, I didn’t even have to think about answering questions.  Anything to get away from having to speak.  Because, of course, for the first several months when I had the worst of it, I couldn’t.  And after that, I could speak a little, but not much.  I found it easier to nod and smile than to speak.

It was the second day that I was supposed to go to tai chi, and, I don’t know why, but I went anyway.  Class was Monday, Wednesday and Friday, and it was Wednesday, already.  I didn’t want to quit without giving my instructor any notice, I don’t know why, I just didn’t.

After the first day at tai chi, there was my wife to consider, too.  She was younger than me, and of all the things she must have thought could happen to me, a stroke was the farthest thing from her mind.  I seemed so… healthy until my stroke.  It was the diabetes that got me, I suppose.  I didn’t know I was diabetic until I was hospitalized with the stroke.

I was working late as I always did—I got off around one o’clock in the morning.  Feeling tired, way tired I thought that my drive home was a little peculiar, but I put that down to the late hour.  Thinking back, I ran the car off of the road at about 5 miles per hour, and that definitely wasn’t normal for me.  Fortunately, there was no one around to see, or maybe unfortunately for me because I could have gotten treatment right away and possibly could have been saved all of this grief.

They say that within the first few hours of having a stroke are critical for treatment.  If they catch it right away (three hours), the patient can be given tPA. “Approximately one-third of the treated patients had favorable outcomes.”  Believe me, if I could have been one of the one third of the patients with a favorable outcome, I would have taken it.  There was no guarantee, of course, but the odds were good.  That is, if I had known I was having a stroke.

The next morning, I got up late, and felt the urge to rush out the door after kissing my wife, so I did.  It was eleven o’clock, and I was tired, but otherwise feeling… not okay.  But I was talking kind of funny.  My wife must have noticed something off in my speech patterns, because she immediately called my son (who I worked with) and asked him to check on me to see if I was all right.  I wasn’t, but said I was so as not to worry him.  It was about noon by that time, so my son asked if I would like to go to lunch.  I agreed.  I was feeling odd, sort of.

He drove and we went to the Melvindale Diner, I think.  We were there for a few minutes and he asked if I was okay again, and this time I answered that maybe we could go to the hospital, because I wasn’t feeling so well.

That was the last thing I remembered until I woke up in a hospital bed, and I realized that something was drastically wrong with me.

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I couldn’t think.  I was weak.  I was lying in bed.  I went back to sleep.
 
I woke up, groggy again, but I realized in a panic that I couldn’t speak.

It gets hazy after that.

I don’t remember anything clearly.  The first recollection I had was a nurse coming in, and my wife being there.  She asked if I was okay, and I said, “What?”  At least that’s what I think I said.  Everything else was a blur, then, and I went back to sleep.  But as I drifted off, I remember that my wife was crying.

It gets fuzzier then.  I don’t remember what day it was.  I didn’t remember how long I had been in there.  I peed, and I remember thinking, “Oh, no,” because I had diapers on.  I was spared the indignity of a catheter.

More nurses.  More visitors.  My brother and his wife came.  My son was there.  A visit from my wife.  More sleep.  I knew, though, before I went to sleep again that something wasn’t right, because I couldn’t talk, and it terrified me.

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“You’re diabetic,” she said.

I don’t remember what I said next to my wife, although it was probably incomprehensible.

“You’ve had a stroke,” she said.

I didn’t know what a stroke was, but I knew that it was bad.  I couldn’t talk, I could barely think, I walked funny and my right arm didn’t work right—I was in trouble.