The Elephant in the Room

Instead of composing a blog post, I have been working on my book. So here is a small snippet of the chapter I’ve been working on called the Elephant in the room.

The elephant in my room is this thing called Aphasia. It came to life during my stroke and it reared up and tried to steal my ability to talk, read, and write. 

Jon Hopkins medical center defines Aphasia as a language disorder that affects how you communicate. It’s caused by damage in the area of the brain that controls language expression and comprehension. Aphasia leaves a person unable to communicate effectively with others. A person with aphasia may have trouble understanding, speaking, reading, or writing.

I had never heard of Aphasia until I had a stroke. But I’ve been told it is more common than Parkinsons. Parkinsons is a disease that is fairly well known, but for some reason, Aphasia, this thing that steals your ability to talk and read and write, isn’t well known. Why is that? 

Maybe because it is often a subset of a stroke. Everyone knows what a stroke is, and they know that people can be paralyzed or die from a stroke. They know it is a big deal. I have talked to lots of people about my stroke, but I haven’t talked much about Aphasia. Well, in my case, Aphasia is the biggest problem I face. I guess I’m thankful for that. It could be worse. I couldn’t have been paralyzed. But why do I say that? Well, my perception is that being paralyzed is worse than what happened to me. Hmm, I’m talking about this thing that is stealing my words?

I have a friend who has lived his entire adult life in a wheelchair. Actually, I was there when it happened. It was Thanksgiving day, 40 years ago.  We were riding dirt bikes in the desert, and his bike flipped and he broke his neck. Months of recovery, months of rehab, years of figuring out his new life. Man, it was a big deal. Anyways, I was talking to him recently and somehow our conversation turns to his disability and he says he would never trade the brokenness of his hands and his legs for a disability in his mind.  

I’ve been thinking about that statement, that he would rather be paralyzed in his body then paralyzed in his mind. Well, in some ways, I am disabled in my mind. My ability to communicate is paralyzed. I know it isn’t apples to apples, my brain isn’t completely paralyzed, most of it works. But still, it is sort of a big deal too. Thankfully I don’t have to pick between a paralyzed body and paralyzed mind, what happened already happened. But if I had to pick, I’m not sure which option I would choose.

Maybe another reason is because people who have it, don’t talk about it. For obvious reasons, like, they are not able to talk at all, or they fear people will think they are dumb (dumb, interesting word, normally it means you are not intelligent, but a second definition is that you can’t talk). People with Aphasia know the second definition is true for them, maybe they can talk some, but they can’t talk very easily. What they fear is that others will assume the first definition is true as well. Just so you know, Aphasia does not affect your intelligence. 

Maybe it’s because it is invisible, no one can see it. The elephant in my room is invisible. People with Parkinson’s have tremors, people who are paralyzed use wheelchairs, but  there is no way to tell if someone has Aphasia. That is until they try to communicate.  It is easy to leave it invisible. At the end of bible study yesterday I was asked if I wanted to pray, and I said no.  As I was leaving I said to my friend Perry, who had asked me to pray,  “just to let you know, I’m giving up on talking”.  I was being facetious, obviously, I still talk, falteringly, with pauses and wrong words. But that day, it was easier to leave it “invisible” than to attempt to pray, out loud, in front of people. Often I will not say what I wanted to say to keep the elephant hidden.

For whatever reason, aphasia isn’t well known. So I thought I would shine a light on it and how it has affected me.

In the hospital I realized my mind wasn’t working very well but I didn’t realize how bad it was until I came home and my son gave me an Ipad with a program on name recognition. It gave photos of common things and I needed to name them. The first picture that came up was an elephant, how easy is that I thought, but all that came out of my mouth was “uh uh uh”.  I couldn’t say “elephant”. After going through fifty pictures I realized I couldn’t say anything. 80% wrong.  I tried it again the next day. 80% wrong. Day after day, week after week I worked on it, but 20% right was the best I could do.  

I can remember the day when, out of the blue, I got 80% right.  That day I went from 80% wrong to 80% right. The next day I got 80% wrong again. But I realized there was hope. Hope is a remarkable thing. Hope in the here and now and hope in the eternal life that is coming. Because of hope, I continued working on it. And gradually my grasp on words got better.  Not great, but better.

At the same time I was dealing with lots of other things. The right side of my body was numb. I was figuring out how to see with one and a half eyes. Which was actually harder for me then having one eye. My left eye has some peripheral vision but nothing in the middle. I have some bad reactions to some medicines I was taking. And the fatigue that came after the stroke was brutal. After a year of figuring out what was going on, most of it was dealt with. But what remained were my language problems.

But I kept on working on it. I really worked on writing. For the next year learning to write was my focus. And I eventually started my blog, chairs of the porch. Gradually my writing got better, not great, but better. 

Which leads me to talking. Talking out loud. This year, I committed to work two days a week on a construction project at a camp. I was working on something other than Aphasia. I was trying to enter back into my old life. And maybe it caused a setback of sorts in my battle with Aphasia. Why, because talking has become harder. While I worked on writing and reading, those things gradually improved. It seems my talking is getting worse. I realize maybe it’s because talking is needed on my jobsite. I have to communicate with specific words and numbers, words that often don’t appear in my brain, and numbers, well, they never appear in my brain. Anyways, it has become harder than I anticipated. I realized I could work through an easy conversation only using words I could recall. But now having to communicate with specific words has become hard.  As it stands, I guess I don’t have enough bandwidth in my brain to both work on my language and work on other areas of my life. So I guess I’m deciding if I want to let the elephant loose to do some trampling on my talking, while I’m working on my life.  Decisions, decisions!

Aphasia, what a beast! This thing that tried to steal my ability to talk, read, and write.