I am Waiting to Go Blind

by Kevin McNally

From the Editor: Sometimes I dig for articles, beg for articles, and wait interminably for them. But sometimes they come from out of the blue. Such is the case with this one, and I’m very glad it came.

Kevin enjoys guitar, his pet chickens (yes, you read that correctly), volunteering at his church, doing live sound production, playing in his acoustic duo called Hat-Trick Unplugged, and hosting his podcast, The Kevin McNally Show. Here is his contribution:

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 percent 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 twenties, 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 thirties, I was blessed with my two daughters. I graduated law school, passed the bar, traveled, and enjoyed a blossoming career. I was still waiting to go blind.

My forties 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 early fifties 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.

As ominous as this repeated refrain sounds, vision loss has been a blessing in my life. Although I have been waiting to go blind for fifty years, vision loss and the threat of complete blindness has 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. The early realization that I control almost nothing is the blessing of vision loss.
I am still waiting to go blind, but I am not waiting around for it to happen. When and if it does, I no longer feel the sky will fall; I will still be Kevin McNally, and the world will still be what I make it.