One year ago today, January 7, 2018, I was on a business trip to Oklahoma City. Earlier that morning I noticed a slight distortion in the vision of my right eye along the very bottom, almost as though there was mucus along my eyelid. It had been two years since I had experienced NAION, https://tinyurl.com/y72a6xfp, in my left eye so I was concerned that the same thing was beginning to happen in my right. In fact, I knew what was going on but didn’t want to admit it to myself.
This was the thing that I had feared most since I began losing vision in my left eye. Long story short I returned home the next day and over the next several weeks visited with neuro-ophthalmologists at Penn, Hopkins and Wills Eye and they confirmed that I had a new case of NAION in my right eye. Once again I was told that there was no medicine or operation that could cure my condition and I would just have to wait and see how bad it would be.
As it turns out, my right eye ended up being worse than my left eye. I am now legally blind and by the end of February 2018, I had ceased doing work and had given up my law practice. I could see enough that I was willing to drive in the neighborhood and in places where there was little traffic, but was convinced a short while later (by 3 doctors, no less) that even this small amount of driving was a really bad idea. I gave up driving.
I challenged myself to do something that “blind people” shouldn’t be able to do. In March and April 2018, I wrote an entire novel (80,000 words). I used dictation software called Dragon, which made it much more do-able. This was the fifth novel I had written. Writing fiction was something that had been my hobby, now I needed to prove to myself that I could do something more interesting than sitting in front of the television all day. Since I became “bilateral” I have continued working on my writing and in August 2018 learned that one of my books will be published by Headline Books (an environmental legal thriller called Drink to Every Beast, coming out in April 2019).
I have had to adapt. That’s really all you can do. There are times when my condition is quite depressing and times when I just wish I could blink and my vision would be restored. When I dream, my vision is perfect. I’ve learned to be much more careful walking on the sidewalk or crossing the street. I’ve learned to move just a step slower in anything I am doing. While it was impossible for me to keep up with all of the reading I needed to do as an environmental lawyer, I’m still able to read using audio books and Kindle (it is almost impossible for me to read paper).
Facebook’s NAION affinity group is incredibly helpful. It provides the largest amount of information relating to our condition that you can find in one place. Also, it puts you in touch with people who have experienced various clinical trials and other alleged medical treatments for this awful condition. Most importantly, they put you in touch with others who have this condition and knowing that you are not alone is helpful. I hope that I have been able to help others who are afflicted with this condition.
It would be a fabrication for me to claim that “surprisingly, this is the most wonderful thing that ever happened to me.” It’s not. I would love to have my vision back. The most important thing I have learned from all of this is not to let the condition own you. That is easier said than done. Nevertheless, once you make the decision that you’re going to be productive on a daily basis and do what you’re able to do and if you are fortunate enough to have supportive people around you, you realize that you can do anything. OK, almost anything.