A few days after the fall that caused my concussion/TBI, I was with my sisters at a family gathering. One looked at me and said bluntly, “Why are you staring at me like that?” I could tell that I was having difficulties focusing my gaze, but I didn’t know that people would be able to tell. I told her I was just looking at her. The next day, another sister who was sitting next by me at the time asked, “Why is your eye moving like that?” Again, I didn’t know what she meant.

More than a year later, I would learn that I had something called nystagmus, or involuntary eye movements. In addition to the nystagmus, according to my ophthalmologist, my eyes were not working together properly and there was a “postural” problem with my eyes. A doctor informed me that my optic nerves were in a constant state of tension. How did this feel you might ask? Well, in my particular case, I suffered from the following:

• visual disorientation – difficulty focusing visually, resulting in bad headaches
• difficulty with screens (I did a one-paragraph translation that should have taken no time and it took two days to complete)
• eye strain – not being able to keep my eyes open for too long
• when I closed my eyes, I could feel my eyes moving behind my eyelids
• when I closed my eyes, my brain would create a slideshow of memories or images in rapid succession, maybe half a second for each image. It was about 5-10 minutes before they calmed each time I lay down. This lasted for about two years after the accident.
• inability to drive, and when I started driving again, physical anxiety that would lead to anxiety attacks, so I hardly drove
• inability to cook for more than 5 minutes, and even then, I had to rest for an hour or more afterward
• sensitivity to light

Vision-related treatments are slow. As my mother-in-law said, “Something happens to you and life changes in an instant, and then recovery is a very long process.” I went through two specialists who used some vision therapy techniques before I started with an ophthalmologist who specializes in concussion and TBI. Based on the tests she did, she prescribed me new glasses which helped my eyes to relax, and she created a vision therapy plan for me. She also prescribed syntonic light therapy, which was extremely important for relaxing my optic nerves. I went to vision therapy every week, then every two weeks, and finally every 3-4 weeks. My therapist gave me exercises to do at home based on the skills I needed to work on: convergence, divergence, saccades, and more.

After over a year of daily exercises at home, in combination with other therapies and medications and treatments, most of my symptoms have slowly gone away. I should still continue with the more complex exercises. I still have to limit how much time I spend in front of screens or driving, although I’m mostly able to live a “normal” life by factoring breaks into my daily routine. When I started working at the library, I had a few days of headaches from being on the computer too long or returning too many books to the shelf (repeated saccadic movements).

It’s been 3.5 years since the accident. I’m able to do 90-95% of what I did before, and I’m still working on improving my vision!

They say the first 80% goes “quickly” and the last 20% is the hardest to solve.