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May 17, 2016

by Moira M. Shea 

Vice-Chair | Usher Syndrome Coalition

Moira lives in Washington, DC with her husband Christophe Lorrain, her guide dog Finnegan, and his significant partner career-changed guide dog, Asia.

As the Vice Chair of the Usher Syndrome Coalition, I have the opportunity to connect with many other individuals with retinitis pigmentosa (RP), both with and without Usher syndrome. Over the past several weeks, I have spoken with several individuals with (RP) and have shared my “a-ha” moment. They found it very interesting, so I thought I would share it with you 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 my guide dog I called Mr. Perfect, who 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.

Moira and her dog Finnegan leaning against a green railing

He was replaced by Finnegan, my first guide dog as a totally blind person. How could I continue his training if I could not see enough to let him know where I wanted to go? In the first year with Finnegan, I would get lost coming home from the Metro, often ending up in an alley. I would call my husband in tears to tell him I was lost, and could not tell him where I was.

With my limited hearing, I had to learn to listen to the traffic flow, be aware of the slope and rises of the sidewalk. I had to count steps to figure out when to turn left or right in the middle of the block. Being blind is a totally different experience from having low vision, and it requires one to learn a whole different set of skills. It was all a nightmare from which I could not wake up. I was angry, sad, depressed, but fighting to live my life to the fullest; nothing was going to hold me back. 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, keep my health insurance, and I was in good health. I didn’t want to sit in front of a computer for eight-plus hours, day after day, reading and editing policy documents.

Today, I sit at my computer writing this blog, because I have something I want to share. I cannot see my screen, but my fingers are flying as I write this.

My guide dog, Finnegan, has settled down and works beautifully. I am more in tune with him and my surroundings. I walk up to the gym, which is about a mile away from my house for body sculpting and yoga classes. I take the Metro to go downtown for medical appointments, shopping, errands, and lunch with friends. 

I travel by myself all 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 app. Another app, available for free to the legally blind, enables me to “read” The Washington Post and The New York Times and have access to thousands of other newspapers and magazines. Best of all, I’m learning to play the acoustic guitar!

So here’s my “a-ha” moment. What I realized, and have mentioned to others experiencing vision loss, is that I think I’m 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 of sight loss.

I also do not miss making the demanding adjustments to my life. I have a full and happy life. I do not want to sound like a Pollyanna, but I now know what I have to deal with. No more adjustments, no more hats to prevent the glare, no more waiting to step from light to dark no more fear of traveling in the dark, it no longer makes a difference. No longer do I think, “Could I see that before?” “Is my vision worse or is it the light or is it the humidity in the air effecting my ability to see more clearly?”

I am no longer scared, for the first time in 45 years. I am finally here in this land of blindness, and my life is not over.

In some ways, I think this experience has prepared me for the day that I will have to adjust to my restored vision. My skin cells, which have been converted to stem cells, are now undergoing the process of gene editing to delete the mutation that causes RP. These stem cells will then be developed into retinal cells to be transplanted into my eye and restore my vision. That is the day I will win, finally, my battle with Usher syndrome. I am ready for that day.

In the meantime, I will live my 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, “I am no longer scared. It no longer makes a difference – I travel whether it is dark or light.”

Moira sitting at a circular white table on a wood deck in front of green backyard with pink flowers
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