The Light Will Come Back | Own the Equinox, Day 8

September 1, 2015

by Moira Shea

My name is Moira Shea and I have Usher syndrome 2A. I serve as vice chair for the Usher Syndrome Coalition and I am also on the Board of Directors for the Foundation Fighting Blindness (FFB). I am 60, and have been involved in this fight to eradicate Usher syndrome for over 40 years. Despite having Usher, I have a wonderful life. So far I have survived Usher, overcoming whatever adversity that came my way. Like many of you, I am resilient.

Photo of Moira Shea and Mark Dunning at the Usher Syndrome Research Lab in Iowa, in front of a sign with pictures of Bella Dunning and Moira and her dog that reads "Leave No One Behind"

Mark Dunning and Moira Shea tour the William Kimberling Research Laboratory at the University of Iowa.

Some think survival is for those who are the fittest; they are wrong, survival is for those who are the most adaptive. I have been able to adapt to Usher syndrome. I have adapted to night blindness, hearing impairment, hearing aids, glasses, reading lips, speech therapy, sunglasses, hats, tunnel vision, contact lenses, white cane, guide dog, high contrast computer screens, screen readers, and then blindness. I am totally blind. However I count my blessings. I have a wonderful husband, I retired with a good pension after working for 35 years for the US Congress, and federal agencies, continuing to rise professionally along the way. I am in good health, have great friends, and live in a great neighborhood in Washington DC, where I have access to public transportation. With my guide dog, I go swimming or to the gym as much as possible. I have my independence.

I can be honest and say that I miss my vision. I loved seeing and never took it for granted. I loved to spend time in museums and travel by myself and on my own. However, things could be much worse. I am healthy and happy.

I have written my autobiography which helped me to reflect on my life. I learned that growing up in Europe and Asia and being exposed to so many different cultures, religions, governments, and languages caused me to be very adaptive early in my life. I have always set challenges for myself and when I overcame them, it empowered me.

So set the challenge for September 19^th and own the equinox, when the world goes more into darkness than light. The light will come back. It could be gene therapy. It could be stem cell technology. I can see the treatments coming. They are just ahead of us. Usher will fade away as our vision for a cure remains strong.

Learn more Usher Syndrome Awareness Day and how you can Own the Equinox.