Thursday, July 3, 2014

"Where's the REST of me!" and strokes

One of my favorite movies is "Kings Row." In the film, Ronald Reagan's character, Drake McHugh, has both legs amputated by a sadistic surgeon, played by Charles Coburn. When he comes to following the operation, he screams in shock, disbelief, and horror, "Where's the REST of me???" 

After my strokes, I often said to myself, "Where's the REST of me?" 

Though I am getting better everyday, and I have NOT plateaued, I am tired of years of therapy.  I am taking a break from therapy during this summer. Nevertheless, I did have an appointment with my eye doctor yesterday just to make sure that I have not lost ground.

Dr. Scott Lewis and his staff are miracle workers. “Focus Vision Therapy Center” is helping so much. The clinic focuses (pun intended) on children; however, many adults with issues like strokes get much needed vision therapy.

After my strokes and seizures, I lost all hope about reading. It seemed that my doctors’ said, “Well, it’s bad that you cannot read, but it could be a lot worse.”

Certainly, for me, my strokes could have been much worse. However, when you lose the ability to read and write, it is devastating. The ability to read and write was implicit in my “just being.” My profession required reading and writing. My hobby was reading.

After the strokes, so many doctors and therapists tested me in so many ways.

“Can you read? Can you write? Can you do math?”


As I recovered, I did months and months of all sorts of therapy.

One of the biggest struggles I was occupational therapy. The goal for me specifically was to “get me back to work.” That was incredibly hard. As a trade association CEO and a lobbyist, I made my living making speeches, doing presentations, and juggling intense responsibilities. That was just gone.

My therapist made me try PowerPoint, Word, and math. It was simply awful. I lost so much skill that was second nature. I could not even try to comprehend basic math. My son was in the First grade, and HE helped me do math homework. But, I could not.

Fast forward two and a half years later, I am still recovering basic skills. I “read and comprehend” financials. However, I cannot express “numbers out loud.” I can read documents, but I cannot read out loud at all.

I simply found out that most some stroke survivors and doctors basically have the attitude “well, it is what it is.”

That is not good enough for me. At a stroke support group, I heard a presentation about stroke, vision, and reading. For months, I have been seeing Dr. Lewis and his staff. Even though I took a break for a month, my progress report yesterday was surprising in a good way. I am still getting better.

At the doctor’s office yesterday, I got an invoice. Later, I read the invoice. The fact that I read the invoice was wonderful.

Ironically, when I read the invoice, for the first time, I realized “what is wrong with me!” 

Where is the rest of me?

For example, I have these eye conditions that make reading hard. This is almost an out-of-body experience: I comprehend what is wrong with me, but it seems it is not my body that is out of whack. But it is.

I have:

Visual Field Defects: “The visual field is the portion of the subject's surroundings that can be seen at any one time. The normal extent of field of vision is 50° superiorly, 60° nasally, 70° inferiorly and 90° temporally. A visual field defect is a loss of part of the usual field of vision, so it does not include blindness of either one eye or both. The lesion may be anywhere along the optic pathway; retina to occipital cortex.”

In other words, I have issues with peripheral vision particularly on the right.  

Convergence insufficiency: “Convergence insufficiency occurs when your eyes don't work together while you're trying to focus on a nearby object. When you read or look at a close object, your eyes need to turn inward together (converge) to focus. This gives you binocular vision, enabling you to see a single image. Convergence insufficiency can cause difficulty with reading. This may make parents or teachers suspect that a child has a learning disability, instead of an eye disorder. Treatments for convergence insufficiency are usually effective.”

In other words, reading is a big problem!
Double Vision (Diplopia): “Double vision, or diplopia, is a symptom to take seriously. Opening your eyes and seeing a single, clear image is something you probably take for granted. But that seemingly automatic process depends on the orchestration of multiple areas of the vision system. They all need to work together seamlessly.”

In other words, my nerves carry visual information from the eyes to the brain. The brain is where several areas process visual information from the eyes.

I am grateful for Dr. Lewis and his staff. I am incredibly grateful that I have the resources to pay for therapy because many survivors do not have a lot of money. I am incredibly grateful for patient family and friends who humor when I get despondent.

I do realize that I probably will never get back what I lost. But, my motto again, “it could be worse.” 

OK, where is my book?

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