In November of 1971, the same year the Foundation Fighting Blindness (FFB) was established, I was diagnosed with Usher syndrome, a disease that causes both hearing and vision loss. I was 15 at the time, and my parents and I quickly became involved with FFB, and over the past 45 years, I've been able to meet many others dealing with the fear of blindness.
Over the past several weeks, in particular, I've shared with several people an "a-ha" moment, which they found very interesting. So I thoughtI'd blog about it as well. In 2011, after decades of gradually losing my eyesight, I went totally blind. It was horrific — one day, I went out to water the rose bushes and could not find them. I scrambled to learn screen-reader software, which felt like a second language. Soon after losing my sight, I also had to retire a guide dog I called Mr. Perfect, who, for years, had helped me go through the transition of severe vision loss. Over time, he became more assertive about making decisions on which direction to go, so convinced was he that he could read my mind. He was replaced by Finnegan. During our first year together, I would get lost coming home from the DC Metro, often ending up in an alley. I would call my husband in tears, telling him I was lost and had no clue where I was. And with my limited hearing, I also had to learn to listen to the traffic flow and any distinctive sounds that could help me navigate. Being blind is totally different from having low vision; it requires learning a new set of skills. It was all a nightmare from which I could not wake up. I was angry, sad and depressed, but fighting to live my life to the fullest. I would not let Usher syndrome win. After 35 years serving in the public sector — as a policy wonk who changed jobs every four to five years, so as to continually learn new things — I decided to retire and simply enjoy life. After all, I have a wonderful husband, I would get a good pension and keep my health insurance, and I was in good health. Plus, I didn't want to sit in front of a computer for eight-plus hours, day after day, reading and editing policy documents. So, here's what I have to share — my "a-ha" moment. Finnegan eventually settled down and worked out beautifully. I'm totally in tune with him and my surroundings. I walk to the gym, which is about a mile away from my house, for body sculpting and yoga classes. I also take the Metro to go downtown for medical appointments, shopping, errands and lunch with friends. I travel by myself around the country. I'm taking lessons to migrate from a PC to using VoiceOver on the Mac. I listen to House of Cards on my iPhone, using the built-in audio-description apt. Another app, available for free to the legally blind, enables me to "read" The Washington Post and The New York Times have access to thousands of other newspapers and magazines. Best of all, I'm learning to play the acoustic guitar! What I realized, and have mentioned to others experiencing vision loss, is that I think I am in a better place. Sure blindness sucks. Sorry, but there is no better way to express this alteration of life that is imposed by way of genetics. But what I do not miss is the anxiety of losing vision, of constantly being on edge, waiting to fall off that next cliff into a great abyss. I also do not miss making adjustments. There are no more hats to prevent the glare, no more stepping from light into dark, no more fear of traveling. No longer do I think, "Could I see that before?" "Is my vision worse, or is it the light or humidity affecting my ability to see more clearly?" I am no longer scared, for the first time in 45 years. I am finally here, in the Land of Blindness, and my life is not over. I have a full and happy life. The other day, when I was finishing up a visit with friends, someone said, "Oh, that will give you time to get home before it gets dark." I replied, "It no longer makes a difference — I travel, whether it is dark or light."