When people meet me, they might sense something a little weird.
OK, a lot weird. One key thing is, I don’t hear perfectly. I have worn hearing aids since I was 3, but the latest models are small enough to escape notice. At some point after I meet people, I might mention I am hearing-impaired, particularly in noisy situations.
The other thing is also not immediately detectable. In fact, most people never realize this one: I am blind.
I mean I am legally blind. I have tunnel vision that has reduced the range that I can see to about 15 degrees. Less than 20 degrees is considered legally blind in most jurisdictions.
To put that in perspective, you probably have 180 to 210 degrees of vision. That means if you looked straight ahead and stuck your arms out from your sides, you would see your hands, 180 degrees from one to the other. You might even see a little behind them, which would be as much as 210 degrees.
If I held my arms straight out in front of me as if I were holding a basketball and stared at a spot between them, I could not see either thumb clearly.
That means I am usually scanning my immediate environment, which I suspect leads many people to think, “OK, there’s something squirrelly about that guy.”
And my lack of peripheral vision often leaves me just standing there while someone is trying to shake my hand, probably prompting the thought, “Oh, weird AND rude — that’s a winning combo!”
I have retinitis pigmentosa, a condition that causes a progressive tunnel vision that slowly closes the aperture of vision. Some versions of this progress more slowly than others. I am lucky to have a slow version. Some people go completely blind while they are still children. It is inherited and incurable.
When the condition is accompanied by hearing impairment, it is called Usher syndrome. The first symptoms, besides hearing loss, are night blindness and inability to see stars.
Many polls show that going blind is the thing people fear most. It used to be mine. But you might have noticed that I called myself lucky two paragraphs back.
Lucky because of my perspective. I was reminded of that by Travis Mills, who was interviewed by Publisher Paul Feldman for this edition. Although Travis is by nature an optimistic, happy guy, his disposition was severely tested after his arms and legs were blown off in Afghanistan.
Travis could not see the point of living, even though he had a wife and a baby girl. But all he could see was his uselessness and shame. He had been a star athlete in high school and a mountain of a man who powered his way to the rank of staff sergeant. But after the explosion, he could not even wipe his own butt. That was one of the worst indignities driving him into depression early in his recovery, as he described in the book Tough As They Come.
This was after he endured searing pain radiating from nerves severed by missing limbs. The agony was bad enough that doctors put him into a ketamine coma for several days to try resetting his pain tolerance. His caregivers and family did not know if he would emerge sane or even lucid.
He came out of it, and saw his condition all too clearly. But then he witnessed what he thought might have been a hallucination left over from the coma — a man who walked into his hospital room on prosthetic legs, got Travis a can of soda and opened it with prosthetic arms.
But this was no dream. He was Marine Cpl. Todd Nicely, the second surviving quadruple-amputee from the post-9/11 wars. Todd told Travis that he was quad No. 4 and assured him that life would get better. Just as the coma reset his pain tolerance, Todd reset Travis’ perspective. Travis now calls himself a recalibrated warrior, living a full life as an example for everyone else.
Light From Darkness
I had some moments like that. Over the years, I have met people with my condition who lived “normal” lives. But it was only a few years ago that I had my own perspective reset.
It was at an Usher Syndrome Coalition conference during a panel discussion. I had watched the panelists feel their way to their seats. They were all completely blind, about my age and younger. I started to regret attending this session.
They then surprised me by saying that their lives had gotten better once they had lost all their sight. They had lived in terror of the screen going black, but once it did, they found another world had opened.
You can get a sense of this the next time you are sitting in a busy environment. Close your eyes and just listen. After a while, the sounds will project a picture of the environment in your mind. It is like hearing a really engaging radio story from which you build the images from the words and sounds.
The paradox is that the perspective is hard to see when you are focused on looking. One of the panelists all but yelled at us: “What are you waiting for? You have lives to live!”
Soon after, at another conference devoted to retinal disorders, as I sat in the lobby of a hotel before the sessions, I saw a toddler running with his dad trailing in hot pursuit. The diapered boy laughed as he tapped in front of him with his cane, as naturally as if it were just any other appendage.
I couldn’t help but smile, but a person I was sitting with turned back in tears. She had late onset retinitis pigmentosa, which usually features rapid deterioration. She was still grieving. That grief does not end until acceptance melts it away.
She saw that I was smiling and I said, “It took me a long time to learn to be like that again. I promise you, you’ll get that back, too.”
Everybody has something they are struggling through. If you have already been through the journey, you can be the one to help light someone else’s way.
Steven A. Morelli