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How Low Vision Changed My LIfe

adulthood, life changesLindsyComment

It's one of those things that we often take for granted; the simple ability to see clearly. Most people with blurry vision can bring things into focus with the right pair of eyeglasses. I am not one of those people. Growing up with 20/20 vision, I never thought I would be. I prided myself on how well I could see. Several years ago, however, my eyesight began to change, and I learned that I have a hereditary eye disease called optic atrophy. 

Most people get glasses because there is something irregular about their retina. The doctor would tell you my retinas are "perfect." What is not perfect is my optic nerve. Basically, when my retinas take in all the visual goodies and send them down the information highway to my brain, half of the report gets stuck on a dead end. Since about half of my optic nerve has atrophied, only half of the info my retinas take in is processed. Glasses help a bit, but since there is no way (yet!) to repair an optic nerve, I'm kinda stuck. Here's the story of how my life, and perspective, changed.

how low vision changed my life


December 2008: i visited a Sears Optical location for an eye exam. I remember this as being a strangely grown-up endeavor, somewhat exciting. This was just a few months after beginning my first professional job, and I was learning the ways of health insurance and in-network providers and the like. It seemed like a very adult thing to notice that maybe I needed glasses and hey, I could handle this on my own. There were no nerves, just a healthy sense of optimism.

At the exam, though, things took a strange turn. For my entire life, I had passed any eye exam with ease. Even just a year and half before, I had gone for one when my mom noticed I was squinting a lot, and there was no apparent problem. Now, though, I couldn’t seem to focus. First one corrective lense seemed better, and then the other did. The optometrist asked me to come back and have my eyes dilated; they appeared to be over-strained and we needed to relax my eyes to get a proper reading.

The dilation only helped a bit, because we still couldn’t get a 20/20 reading with any of the correction options. “Talk to your family,” she said. “See if you have any history of vision problems.” As Stephen and I drove home, I called my parents and told them about the whole situation with some puzzlement, but no worry.

“We do have a history of vision problems,” my dad said. “Cone dystrophy.” This was news to me. Here I was, twenty-three years old, and I had never heard a word about it. My dad went on to tell me that not only did he have this condition, but also my grandpa and my father’s cousin. They all began to notice a decline in their vision in their 30s or 40s, and while it couldn’t be corrected to 20/20,  it had never been a big problem for them. Well, okay then. This was not a problem.

I called my optometrist and gave her the information, and we set up another appointment to find the best correction and choose some glasses. She referred me to some local ophthalmologists to get a better idea of what I was dealing with. Life went on.

February 2011: Two years later, I decided to visit one of the ophthalmologists. It seemed like my vision may have declined a bit more. It seemed like the right thing to do.

At the checkup, I failed the color vision test. I had a terrible time taking the exam, feeling frustrated that there were so many lines I couldn’t read. The very patient and sympathetic doctor referred me to a specialist in the field, a doctor affiliated with the University of Illinois-Chicago. I took the number, but didn’t call right away.

April 2011: A couple of months later, my twenty-sixth birthday was on the horizon. I needed to renew my driver’s license. Although I had received an offer to renew it by  mail, because of my safe driving record, I went in person because the letter said that was what you were supposed to do if you had gotten glasses since your last license renewal.

I was a little nervous about this, but I consoled myself that if my vision were that bad, surely the doctor would have pointed it out at my exam a couple of months ago.

I failed. Peering into the little viewfinder goggles at the DMV, every line of letters looked like an ant colony. Nothing seemed to form a coherent shape that I could read or even guess at. The clerk seemed unsympathetic, but gave me a form to take to my eye doctor. I left feeling humiliated and shattered, holding it together just long enough to make it home, and then I cried.

Sobbing, I called my parents. I called Stephen. “What am I going to do if I can’t drive? How will I get to work?” The worst thought, the one that I didn’t say out loud, was that I was losing my vision. That I might actually go blind.

I went back to the eye doctor a few days later and told her the story. “Call Dr. Fishman,” she reminded me. We completed my eye exam. It wasn’t the best-case scenario, but it wasn’t the worst, either. My vision clocked out at 20/50, meaning that I could still drive...but only in daylight.

At work, I told my boss with a strained voice. This would mean my weekly evening shift was no more; instead, I would only work during the day. The following November, when the days began to shorten, my hours would be 8-4 instead of 9-5. This small change was actually a problem since we would need extra coverage at the desk on some days, and I felt slightly ashamed of the disruption I was causing.

June 2011: Stephen and I went to see Dr. Fishman in the city, at the Chicago LIghthouse for People Who Are Blind or VIsually Impaired. Visually impaired, that was me. I wasn’t particularly happy about this whole trip. For one, I was growing to hate eye exams and the way they made me feel. For another, I felt like there wasn’t anything they could do to help, so what was the point?

It proved to be a great step forward, though. They were used to people who couldn’t see well, so the exams were playful and encouraging. I didn’t feel like a loser. After spending a lot of time with a resident, we heard him consulting with Dr. Fishman in the hall. And sight unseen, Dr. Fishman diagnosed me not with cone dystrophy, but with optic atrophy.

As it turned out, there were some key indicators of cone dystrophy that I just didn’t have. The two diseases could easily be mistaken for each other, when looked at broadly, but it was obvious that I didn’t have it. And the dead giveaway, apparently, was my very pale optic nerve. The paler the nerve, the more cells that have gone dead.

We concluded that my relatives had likely been misdiagnosed, and traced out the family tree. It was hypothesized that even though the onset of my atrophy occurred earlier than other family members, it had likely plateaued and would not worsen. I took lots of tests: field-of-vision tests, color vision tests; x-rays that scanned my eyeball. Since this was a teaching hospital, about eight different residents took a look inside my eyes, shining the tiny light and bringing their faces close to mine. I was there for four exhausting hours. At home, I took a nap.

Since then, I have visited Dr. Fishman and his team once a year. My vision has worsened only marginally since then. We’ve talked about my son, since there is a 50 percent chance that he has inherited the disease. I hold out hope for something to make it better. One of my Google Alerts is for search results on “stem cell optic atrophy”; there is speculation and very-early-days testing on the ability of stem cells to regenerate optic nerve cells.

Mostly, I’m happy to have my vision at all. As Dr. Fishman likes to remind me, what I do have is still pretty good. Just now, reading over this post, I noticed the word failed more than once. Even though it is true in the literal sense, and I most certainly felt like a failure at the time of those tests, I think I'll stop using that word when I think about my vision. What I should do is succeed. I should succeed at being grateful every day. It's so easy to get sucked into a land of sadness and pity and what-ifs. Together, let's be grateful for what we have.

Gratitude, gratitude, every day.