When I first had optic neuritis, I basically couldn’t see anything out of my right eye. The letter chart at the eye doctor looked like a solid black rectangle. I couldn’t see lights or colors. If I closed my left eye, my cell phone looked solid black, the TV looked solid black, and I couldn’t see the numbers on the stove or microwave clocks. I could see the shape of my son’s body, but I couldn’t make out any facial features, no eyes, nose, or mouth.
I started steroid infusions that day. I expected my vision to improve after the first infusion, but there was no noticeable change. The doctor prescribed five days of infusions. I assumed I would be better by the fifth day, like how an infection should be gone by the time you finish antibiotics. But, that’s not how it works with optic neuritis and steroids.
Every day, throughout the day, I would test my eyes, closing the left, then the right, to compare. The first week, the improvement was very gradual. I could start to see bits of light and color on my cell phone and TV, specks swirling through the blackness. I’d read that your sight usually comes back within a couple weeks. My vision was improving so slowly, that I started to worry that my vision would never come back.
Could I adjust to driving and working with one eye? What would my life be like if I couldn’t drive? How would my son get to school? How would I get to work? My job requires a lot of time reading and writing and a lot of time on a computer. When I was able to start working, I changed the font size on my computer to 300% and I still had to close my right eye, use reading glasses, squint, and take a lot of breaks. What if I could never see normal again? How long could I keep working like this? What if I had to quit? Who am I, if I’m not a lawyer? How would I support myself and my son? Would I have to sell my house? I am a very independent person and the idea of needing people to help, every day, forever, was terrifying.
Every time I was in the car, being driven to a doctor’s appointment, I would test my vision. The sun made it worse, probably because my eyes were not processing light correctly. The first week, the road and cars blended into each other in a large grey rectangle. I couldn’t read any street signs. I remember the first time I could read the numbers on a speed limit sign. My mom was driving me to the lumbar puncture, a week and a half after I first lost my vision. The street signs were all blurry, but just as we passed the signs, I could read the numbers for the first time. My vision was far from normal but there was noticeable improvement. And then, after the lumbar puncture, when I was in pain and nauseous, it got worse again for about a week. I was scared and talked to the neurologist; they weren’t worried. Then, it got better again. I could see the icons on my phone and see the picture on the TV. It was blurry and distorted, but I could see images instead of a sea of black with swirling stars. When I had the panic attack, it got worse again for a few days. And, then better again. What I later learned is that stress, illness, and heat can all impact my vision, temporarily. And, they will forever.
I went back to the eye doctor several times in the months that followed. One week after my diagnosis of optic neuritis, my vision had improved, but was still significantly impaired. I could only read the largest letters. I could see colors, but they blurred together. The eye doctor seemed happy with the improvement. After three weeks, my vision was much improved. Technically, my vision, with glasses, was 20/25. But, that doesn’t accurately reflect what I was able to see. When I looked at the letters it looked like black paint swirling in circles of white paint and I would have to look at one letter, concentrate, and wait for a second for it to come in focus. When the letter would come in focus, I could see it clearly for a second, and then it would swirl away again. I got a new prescription, for progressive lenses (bifocals).
I came back a week later for a visual field test. They have you cover one eye at a time, and you click a button every time you see a light flash. Some are bright, some are faint. Some in the center of your vision, some in the periphery. In my left eye, the test was no big deal. In my right eye, it was painful and exhausting. I wanted to stop several times. I kept thinking I can’t do this. It felt like trying to stare at the tiny warning label on the back of medication that you can’t read, for several minutes, without blinking or looking away. The test showed that I was able to see the lights in my periphery, but I could not see the lights in the center of my vision. I took the test again a few weeks later and I was able to see the lights normally.
My vision continued to improve, I got my new glasses, returned to work, and driving, and a fairly normal life. But, five months later, my vision is still not normal. My right eye is always a little fuzzy or blurry. Sometimes worse than others. If I take a long, hot shower, it is noticeably blurry for an hour or two after. It can get blurry during my period, or when I’m tired. And, stress is a big factor. The week that rioters stormed the Capitol, my vision was blurry for a week. It comes and goes, and is constantly annoying. It’s like when your glasses get fogged up from wearing a mask, or when you first wake up and there is a film of sleep over your eye, but I can’t wipe my glasses clean or blink away the film. And, sometimes it hurts. When it’s blurry and I read too much or am on my phone too long, there is a dull, throbbing pain.
While my vision had improved, I still didn’t know what was wrong with me. Was it MS or something else? The neurologist didn’t know either. My case was a “puzzle.”