Waiting to go Blind

Waiting to go blind

Written by Kevin McNally

Published in the National Federation of the Blind's Braille Monitor December 2022

I was born with a rare degenerative retina disease called Retinitis Pigmentosa. In the early 1970s, my retina doctors at the Massachusetts Eye & Ear Infirmary in Boston informed both me and my older brother with the same disease that we would be 100% blind by our teen years. Not a fun diagnosis.

Life went on, but it went on with this overriding uneasiness that at any moment I could wake up and life as I knew it would be over. I’d be blind. There were sports, girlfriends, vacations, proms, and more, but still, the uneasiness. I was waiting to go blind.

I was a happy child. My teen years turned into my 20’s, and life went on. These years brought college, a marriage, a move to Florida for a few years, beginning law school, and being in a rock band. I was still waiting to go blind, but life went on.

In my 30’s, I was blessed with my two daughters. I graduated from law school, passed the bar, traveled, and enjoyed a blossoming career. I was still waiting to go blind.

My 40’s brought a very difficult divorce, a successful rock band, trips to Kenya, and the realization of my biggest fear: that when I go blind, I will never see my daughters’ faces again. I was terrified. Yet, I was still waiting to go blind.

I am in my mid 50’s now, and I am still waiting to go blind. My vision has decreased, and I gave up driving years ago. I am grateful, though. I have a full time job, I am very active in the blindness and low vision space, I still play music, and I am happily remarried. However, I am still waiting to go blind.

Vision loss has been a blessing in my life. Although I have been waiting to go blind for over 50 years, vision loss and the threat of complete blindness have served to motivate me. As a result, I do not sweat the small stuff, and I know that almost everything day to day is small stuff.

Since my earliest years, I have known what it is like to have a disease you cannot control. The upside of this fact is that I clearly understand those things that I can control and those things that I cannot control. The early realization that I control almost nothing is the blessing of vision loss.

I do not fear blindness anymore. Life has taught me that being blind is not what holds us back. Blindness is not the problem. It is the all too frequent negative internal dialog we have with ourselves combined with the lack of education from the sighted world about blindness. I remain passionate about the social and emotional needs of the blind and educating the sighted world.

I am still waiting to go blind, but I am not waiting around for it to happen.