The world is feeling out of whack to me.
In the last few weeks, I’ve learned about the conditions of several local boys – teenagers who are going through the kinds of trying health situations I’d expect to hear about my mother’s friends. Not about my son’s.
A heart surgery. A gall bladder operation. A mysterious loss of vision. Circumstances that would make a parent pine for something as mundane as a concussion or a broken foot.
Hearing about these incidents reminded me of my husband’s story, a story that I tell with the authority of someone who actually witnessed the events, even though they took place before I ever knew him.
My husband lost his vision when he was in his twenties. It happened gradually but efficiently, over the course of a few months. Initially, his vision became blurry. As if he were driving in a car whose windshield was very dirty, is how he describes it. As time went on, he was barely able to see things directly and was left with only a peripheral vision. And colorblindness.
It took a while for a diagnosis. He went to ophthalmologists and neurologists, submitted to scans and spinal taps, and ultimately it was decreed that his condition was Leber’s Optic Atrophy – a rare affliction that involves the degeneration of the optic nerve. It’s genetic. It’s not correctable by glasses. It’s neurological and untreatable and has left him with either 20/200 or 20/2000 vision (I can’t remember which). In either case, legally blind.
My husband was a PA when he lost his vision. That is, he was a Production Assistant at The Movie Channel, an entry-level job that require he screen a lot of movies and write snappy 30-second promo spots to run on the network. I think it was his first “real job” out of college, and he had moved from his home in Boston to New York to start his career in television.
Once he received his diagnosis (and prognosis – which was, basically, this is your lot in life), he went to his boss to resign. He said that his vision problems were uncorrectable and he planned on moving back with his parents and figuring out how to go on with his life from there.
His boss said to him, “Look, you have a lot of problems. You’re unorganized and your workspace is a mess. Why don’t you go back to your desk and work on those problems and I’ll figure out what to do about your vision issues.”
My husband’s boss then went to bat for him. Somehow, they found machines and contraptions that would enlarge text and video sufficiently for my husband to do his work. His boss got the company to buy it all for him. The idea that an organization would make that kind of investment in a Production Assistant was outlandish.
Yet, they did.
My husband remained at The Movie Channel for a while, and then moved on to become an On-Air Producer elsewhere. After a year he took the same job at Nickelodeon and remained there for 16 years, where he became a Senior Producer, Department Director, VP, Senior VP and ultimately Executive VP Creative Director of Nickelodeon Worldwide, which was an insanely highfalutin title for someone who remained as messy and disorganized as he was as a PA.
Disorganization was not the only characteristic that remained a constant for him. Another was his Vision. Not his eyesight, but his ability to see and create things that don’t yet exist in the world. Losing his eyesight didn’t affect his Vision at all. Perhaps it even enhanced it.
What I’m saying is, he went on to become an award-winning producer of visual entertainment and groomed a staff that went on to run divisions and networks of their own – a prospect that no one could have seen or predicted through that dirty car windshield.
I am heartbroken when I imagine what these young men are going through with their medical hurdles. I can’t even fathom how scary it must feel. And for their parents – the anxiety of what’s to come, what kind of lives their children will now be able to lead.
I don’t know anything about medicine and even less about having to endure that kind of struggle in a life, but I see it proven time and again that our essence, our magic – our superpower – exists in a place beyond our physical circumstances. I want to believe that these boys, like my husband, will discover a power within themselves that will transform them. That they will find their own greatness not in spite of their hardship, but perhaps because of it.
What if they learn early and with certainty that our perfection has little to do with flawlessness and everything to do with loving the parts of us that are broken?