Polished – Photophobia and Optokinetic work

This past weekend I spent 3 days training on the Run Rabbit Run course in Steamboat Springs, Colorado. It was my biggest training week ever, and things went really well. One of those days included the Steamboat Stinger trail marathon. It was hot and dry, and DUSTY, but a great run. My training partner Ellen, and I weren’t racing, and just enjoyed a long training run that happened to have aid stations. After finishing up a warm day on the trail, we went for a soak in the river to cool off…and wash our dirty feet! Watching Ellen wade into the river, I slowly crawled out into the water and sat on a rock. Sadly, I only lasted for about 5 minutes before the nausea and dizziness set in, and then I wished I had settled for a cold shower instead.

My vision clearly still has a few problems. I continue to have a lot of trouble with convergence and tracking, which means my eyes don’t want to play nice together. Reading is still a big challenge. I can read a text, or short email without a problem. However, if I try to read anything longer, I very quickly feel nauseous and disoriented.  If I find an interesting article, I try to give it to Josh to read to me. More often however, I will try to read it and then have to go lay down, and spend the rest of the day feeling terrible, getting mad at myself for reading it, and wondering what the rest of the article said, because I didn’t make it to the end. It doesn’t matter if it is on a screen or in print, both feel terrible.

Another visual issue is light sensitivity, aka photophobia. I still dim the computer when I use it, and wear sunglasses everywhere, or my special tinted glasses. I also have trouble even opening my eyes in the car at night. It isn’t just that the headlights or traffic lights bother me, but that my brain perceives the light to be so bright that I physically struggle to even open my eyes. It is actually pretty crazy. In an effort to push myself, I try to make myself look, and I physically can’t make my eyes stay open! I guess I need toothpicks.

The last big visual issue is movement. I mentioned my issues with moving water, but the trigger can be as simple as watching cars go down a street. It has been getting a little better with my optokinetic homework. This awful little video is getting easier to watch. When physical therapist Mary first had me try, I couldn’t make myself even look at the screen. Over the last couple of months I’ve been slowly increasing the duration every day. Now I can watch the whole video!  I’ve had several people tell me that it is hard for them to watch. For me it hasn’t just been the difficulty in watching the video, it is how I feel afterwards, and even the next day. If I tried to watch too much, I would have to spend the rest of the day in bed, and sometimes even part of the next day.

Optokinetic
Optokinetic training

Next week I go back for a recheck with Dr. Stapleton, and I’m kind of dreading that. It will be my one year post-crash exam, and I already know what she will say. She will want me to start back into vision therapy. I was doing this over the winter, but it was making me worse instead of better. I’ve been doing vision and vestibular therapy work with Mary, but this is not as aggressive as working with a vision therapist. However, working with Mary also doesn’t completely wreck me, and I’ve seen progress. When I saw Dr. Stapleton a couple of months ago, she told me after 1 year, she will want me to go back to vision therapy. I was told it would make me feel terrible, and set me back significantly for several months. Likely I would be back to spending a lot of time in bed, not being able to run, or drive, or do anything, and diving headlong back into depression. There is also no guarantee that it will help. My physical therapist and cognitive therapist think it is a terrible idea at this point, and recommend I continue to work on vision exercises as long as I am making forward progress.

We will see what Dr. Stapleton has to say, and weigh all the options. For now, I think I’d rather keep slowly chipping away and maintaining what little sanity I have. Besides, I technically don’t have to be able to read to run 100 miles. All I need are a lot of training miles, a little dirt between the toes, some badass blue toenails and nobody will know.

It's a glamorous sport
It’s a glamorous sport

28 days and counting…wait, what??? I’m supposed to run 100 miles in less than a month? Clearly I DO have a brain injury. What am I thinking?

2 thoughts on “Polished – Photophobia and Optokinetic work

  1. Love your toes!!

    Please ask Josh to read this: There’s an app called “Voice Dream” that can read aloud OCR text. All you need is an OCR ready scanner. I’m pretty sure it’s free. I love it! Couldn’t have finished my M.Ed. without it. 🙂
    Keep running, keep going, keep knowing how much you are loved!

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