When I was six years old I couldn’t see the chalk board.
Actually that’s not true, I could see it just fine. The kid who sat behind me couldn’t and he had these awesome things on his face that I wanted: glasses. I seriously thought they were the coolest things in the world. How do you get such an awesome accessory? He said he told his mother that he couldn’t read the chalk board…
So…sitting in the doctor’s office staring at an eye chart, I breeze through the lines.
The ophthalmologist decides to take a quick peek at the back of my eye. I decide to blink like crazy because I’m hoping that blinking messes him up and he makes a mistake and prescribes me some specs. Yes, at six years old, I’m attempting to circumvent the medical profession. Fight the power little man. So the doc is flashing a bright light into my eye to look at my retina. The eye is pretty awesome because it’s the only part of the nervous system which can be viewed without surgery.
“Hmmmm” says the doctor.
My rapid blinking is working! I’m fooling him. Awesome, thick-rimmed, coke-bottle glasses will be mine!
He recommends that I see a specialist.
I jump out of the seat and hug my Mom. I don’t think I knew what a specialist was, but I just assumed they were the people who made the glasses.
Over the next several years, I see two specialists at the UIC Eye and Ear Infirmary on Taylor Street on a semi-annual basis. I don’t see it as a big deal since it’s two days a year I don’t have to go to school. They drew blood one time for genetic testing. No big deal. In the early days they would send me to the basement which reeked of bad cafeteria food and formaldehyde. Down here is where the Camera Man lived. Prior to visiting this peach of a guy, they would pour stinging drops into my eyes. It hurt like all hell, but it made my pupils grow to the size of quarters – it looked kinda cool, but I couldn’t deal with bright lights. So of course they send me to a camera guy. With one hand he would hold my head in place and with the other hold my eye lids open because having a super bright light shined into your eyeball kinda triggers an involuntary response to SHUT YOUR EYES. Here’s to hoping that process has been modernized.
I of course don’t see any of this as strange, or out of the ordinary. Doesn’t everyone see a world renowned scientist twice a year?
In eighth grade, I don’t like glasses anymore. I want contact lenses.
At Lens Crafters, or whatever doc-in-a-box vision store, I sit in the chair.
I can’t read a certain line.
The doctor grows impatient.
“Dude, I can’t read that line.”
He questions the prescription I handed him and claims that I’m wasting his time.
Seriously, I couldn’t read that line.
He cancels the exam, storms out and grabs my Mom.
“Mam, your son is too immature for contact lenses.”
I coulda told him that before the exam, but what does not reading a certain line have to do with it?
“He has cone rod dystrophy you jack ass.” Hell yeah Mom, you tell him! Wait, what?
The doc’s anger flips to sympathy.
What the hell is cone rod dystrophy? This was like 1993 – no Google. I think I may have had Encarta on my Packard Bell, but I didn’t bother to look it up.
My Mom informs me that I have a degenerative retinal disease.
“Can I still get the contact lenses?”
I did, and still wear them. I hate wearing glasses. My lenses are so thick that someone once asked if I could see the future with them. Sadly, I cannot.
Explaining how I see the world is pretty difficult. My visual acuity is relatively good. The area controlled by the macula is still pretty much intact. It’s the rest of my visual field that’s a mess of pigmented, charcoal like sludge. A doctor once described it as the ashen remains of a battle my retina fought; is losing, and will eventually lose. Kinda like Afghanistan.
It’s as if the world is closing in on you. You ever look through a straw? Think of how that looks. Now imagine looking through a slightly larger straw.
That about sums it up. It’s not like the rest of my visual field is black – it’s a void which my brain fills in with what it thinks is there. The brain is pretty freaking cool. It’s like MPEG2 encoding where you’re able to make video size small because each progressive frame uses data from the previous frame and only new data is used. Or something like that.
Knowing one day you’ll go completely blind is like living with an expiration date.
There’s always hope right? As the Wachowski Bros. penned it in The Matrix Reloaded, “it is the quintessential human delusion, simultaneously the source of your greatest strength.” Cool line from a movie that ultimately sucked.
I don’t recall where I was, or who I had heard it from first. Not like 9/11 or the OJ verdict, or other events that you just can instantly go to – it wasn’t that profound. But somewhere along the line I heard about stem cells. The problem with the retina, specifically the light sensing photoreceptors which are told to die by my disease is that they do not regenerate. Unlike various other cells in the body, once they’re gone, it’s over. Seriously who the hell created our nervous system? Doesn’t seem like an intelligent design to me at all, but anyway.
So even though my photoreceptors, specifically the rods, are born with a defect which causes them to just perish over time, if you are able to just replenish them – then you can just keep up that process and total blindness can be averted. Not only averted, but normal vision could be restored.
I’ve been going to the UIC Eye and Ear Infirmary since I was six years old – that’s twenty five years. In that time we’ve not only landed two rovers on mars, ended the cold war, built an international space station, expanded and commercialized the internet, and watched the White Sox and Red Sox end 80+ year World Series droughts – but there has been little to no progress in the form of retinal treatment.
Well, until now, sort of.
Dr. Henry Klassen was recently awarded a $3.85 million grant from the California Institute for Regenerative Medicine to study treatments for retinitis pigmentosa – which is basically what I have. He believes that within three years, human clinical trials could commence.
..Human clinical trials can commence….
I read that and for the first time since before I knew I had a degenerative retinal disease, I had the faintest idea of growing old without the need to learn braille, without the need to hand over my car keys. Without the idea of one day opening my eyes and the world that I was accustomed to had vanished.
My brother who is only three years older than me recently qualified for disability insurance due to the progression of the disease. He uses a cane, can’t really get around much, and has a hard time feeding his eight month old daughter because he can’t see her mouth. It’s funny to watch him try – funny in a horribly tragic and sad way – but funny nonetheless.
So on behalf of my brother, and the millions of others suffering from retinal disease, and to my quintessential human delusion –
Help us Dr Henry Klassen – you’re our only hope.
To read more of Jack’s blog, go to http://www.jackmarchetti.com/