As I medicate my “good” eye and patch it up for the fifth time in two weeks, I realize it’s time to turn off my computer. The heat and light coming off the screen is cooking my corneas.
(Hell, for all I know this contraption is bombarding me with invisible death rays that are slowing cooking my insides.(insert crazed laughter track). I know it sounds a little paranoid but a teaspoon of paranoia is good for the digestion.)
I happen to be the proud owner of a pair of donated corneas so it’s imperative that I take good care of them. Replacement corneas won’t be easy to acquire and the surgeries to implant them are expensive. Trust me. I know what I’m talking about.
Sometimes it sucks to be me. Like, for instance, I’m a visual learner which means out of the five senses humans possess, sight is the sense I use the most to navigate through life. Although I’m trying to use more eye-friendly adaptive technologies, I’ve found a healthy (or not so healthy) pair of eyes is far more useful than a high speed computer any day of the week (sigh). Since this will be my last blog for a while, I wanted to leave you with a tasty morsel from my heart– a little soul food.
I met the real superman at a rehabilitation facility for the blind this past spring. I was learning how to “adjust to blindess”, a course necessitated by my failing vision, whereas superman was there to learn “life skills for the blind”. This legless, one-armed man of steel had been blind for nearly 10 years so there was little our sighted instructor could teach him. This was an untenable situation for the instructor, a petite, young woman with the disposition of a pit bull. She wasn’t about to be upstaged by superman.
Some time ago, I read a white paper written by a college professor who had once been committed to a state mental hospital. She claims patients must master the politics of kindness to survive a hospitalization. Politics of kindness is a term of art used to describe institutional policies and practices which reward patients for “playing nice” with staff.
In these not-so-nurturing environments, the imbalance of power between patients and staff, forces the sick to kowtow to caregivers to remain in their good graces. The professor stated that patients were expected to show gratitude for the most minor task performed for them by staff; even when the work was done poorly. The politics of kindness also required patients to be complacent when it came to their own treatment plans. A patient who violated these rules of engagement usually found himself on the receiving end of a poison pen campaign initiated by staff, who also held the ultimate trump card: the key to freedom .
Nobody really knows how you’ll handle the curve balls life throws at you– until you get beaned by one. I found myself “going along to get along” with an out of control bureaucracy that treated the blind like children. Week by week, I became less like me and more like some awful low-vision “pod person”. Now when I look back at that bleak time in my life, all I can say is, “Thank God for superman!”
My capeless hero’s story is tragic beyond words. A violent bar fight left him bleeding out on a sidewalk one night. His life threatening injuries were compounded by the incompetence of the small town doctors who treated him. By the time he left the hospital, he was a blind, triple amputee and not quite 20 years old. When I saw superman for the first time, I thought he looked like a gentle giant.You could tell he’d been a huge guy ’cause he sat pretty tall in his wheelchair. He and I became friends which made things better for me.
I wore a nightshade (blindfold) most of the time, A technique designed to help a low vision student acquire blindness skills faster. This is an unbelievably difficult thing to do ’cause the brain doesn’t like sensory deprivation. At first the brain freaks out but eventually it learns to compensate for the loss of a sense. Let’s just say it, the human body is a magnificent creation.
Superman always knew when I was cheating–meaning not wearing my nightshade.I don’t know how but he did.(Yep. I’d pull the doggone thing off because operating in a sightless mode was frustrating as hell) . One of the coolest things superman told me was that his eyes were always on and that he could recognize people by their unique color patterns. It could have been a bullshit line but I believed him.
He was no angel. In fact, he still keeps company with-thugs, druggies and fast women–but he has a love affair with God that’ll make you weep when he speaks about it. Like me, he was trying to make it through to the end of the program but the life skills instructor had other plans.
Over the weeks, the tensions and hostilities between the two of them had grown. I don’t know who started the argument but superman and the instructor got into a heated disagreement over “cooking hot dogs”.
The instructor had apparently found some handy gadgets which she thought would make it easier for a blind, one armed man to prepare hot dogs. Superman was explaining to her that he already knew how to cook hot dogs and he wasn’t interested in learning her new technique. When it became clear he wasn’t going to budge, the instructor accused him of being negative and hostile. Then, in a final act of spite, suggested he was mentally unstable.
I’d been in an adjoining room working on a project. When the argument started, I did what any nosey person would do, I moved closer to the action (nightshade off) to watch what was going on.
I’m glad I did because superman did something unexpected—he growled at her. I’m not talking about the puny, fake lion noises–people make when they’re trying to be cute. Superman channeled from only God knows where–the first and probably last– MAN ROAR– I’ve ever heard!!!
The pit bull turned chihuahua and fled the building. In the aftermath of this incident, my friend was the focus of multiple staffings and counseling sessions. He must have saw the scarey colors emanating from the staff because he left the program soon thereafter.
I wised up myself and followed suit. To this day, superman and I have never talked about the growling incident. It was the most stupendous, amazing, wickedly cool thing he could have done. With one growl he let the pit bulls of the world know his body may have been broken but his spirit was intact And it was a wild and beautiful thing to behold.
Before I left the program one of the instructors said, half-joking and half-serious, she hoped I didn’t loose my vision for a long time because I wouldn’t be the type of blind person people would be “kind to”. I’m thinking about what she said as I end this blog. I’m hoping the medicines I put on my eye will buy me a reprieve–one more time.
I’m hoping my immune system will calm down and stop attacking my corneas. But I have to tell you, if things turn out differently, I’ll be okay. I’ve met the real superman and I know we’ve got something in common–our souls are intact.
The question is:
CAN YOU HEAR US ROAR?
YEAH, BABY CAN YOU HEAR US ROAR?
