On a Tuesday in early June of 2007, with my own brand of gracefulness (which is none), I managed to both drop and step on my eyeglasses. So I figured the next logical step would be to go get a new pair. On Friday I left our hobby farm and took a trek into the big city to visit the optometrist.
Wandering around the store, I searched in vain for something that would make me look stylish. In my case, putting lipstick on a pig is easier than making me look stylish. Or trendy, or sophisticated. I finally settled for utilitarian.
The saleswoman, who seemed poised to upsell me with the enthusiasm of a Scientology recruiter, finally conceded to my choice but told me that I would have to submit to an eye exam. “Standard procedure,” she assured me. By then, I was pretty much ready to do anything to avoid another “suggestion,” so I agreed. Besides, I was 46; it was certainly possible my prescription had changed a smidgen in the last two years.
She whisked me off to the examining room, which, inexplicably, had pictures of kittens all over the ceiling ― perhaps I had stumbled upon a cult of some kind. A dour middle-aged woman introduced herself as “Dr. A” and said she was going to take a quick peek into my eyes.
She maneuvered a bulky contraption that resembled a submarine periscope toward me and took a quick peek ― for approximately 10 seconds ― before she withdrew the machine and looked at me as if I were some sort of exotic creature she had never encountered before. Then she uttered the words that were to forever change my life, and which will probably still be rising unbidden and unwelcome from my subconscious on my deathbed:
“You need to go to XYZ Colorado Eye Care immediately and see Dr. R. Do not drive yourself there. Have someone come and get you. I’ll call right now and tell them you’re coming.”
Do not pass Go. Do not collect $ 200.
She maneuvered a bulky contraption that resembled a submarine periscope toward me and took a quick peek before she withdrew the machine and looked at me as if I were some sort of exotic creature she had never encountered before.
I’ve had drug flashbacks before, and I’m not ashamed to admit it. I grew up in the 1970s, after all. But I hadn’t had one for over 30 years. This seemed like an exceedingly odd and inopportune time to have one. So I figured I’d better say or do something to restore normality and re-orient myself to Earth.
I managed to blurt out something along the lines of “What? Why?”
“There’s a problem with your eyes,” Dr. A grudgingly informed me. She spoke as if she had an allotment of words for the day and I was raiding her stash. It wasn’t really the information I was looking for ― honestly, I had already gleaned that much of my own accord.
“I would rather have Dr. R explain it to you,” she said. “He’ll be better equipped to discuss it. You should really get there as quickly as possible. I’ll have the receptionist call them.”
I didn’t know what she meant by “better equipped” ― I was thoroughly perplexed by this point ― but my options seemed to have diminished to none. So, gamely, I called my long-suffering wife. Most couples who have been together for decades tend to form some sort of low-grade psychic bond, and since I had previously been stricken with a mild heart attack at work and had her not believe me until my boss got on the phone, I had a pretty good inclination of what was to ensue:
“Honey, I’m at the optometrist. They said I have to leave the truck here, and you have to come drive me to XYZ Colorado Eye Care right now.”
“Will you stop screwing around and get your glasses?” (Click.)
(Redial) “Honey, I’m not pranking you. This time. Here, please talk to Dr. A.”
Dr. R, thankfully, seemed to have a much larger word allotment than Dr. A, even if I didn’t appreciate it at the time. He explained that I had a condition called “end-stage pigmentary dispersion glaucoma.” To put that in layman’s terms, the pigment (colored part) of my eyes was flaking off and clogging my eyes’ drainage canals. This causes the eye pressure to rise, which can irreparably damage the optic nerve and cause vision loss. Normal pressure levels in a healthy eye are between 8 and 12; mine were 58 and 62, left to right. This is the kind of damage that may someday be repaired with stem cells, but today there is no cure.
Dr. A’s reaction didn’t seem quite so eccentric anymore.
So, in medical parlance, I needed immediate trabeculectomies and shunt placement. For the rest of us, that means having your eyes cut open and stainless-steel drains implanted in them. I was also declared “legally blind,” a term I find perplexing to this day since I have yet to meet an “illegally blind” individual.
Oh, I know what you’re thinking: “How could he be going blind and not know it?” I had the same question myself while I swam through the river of denial. The answer is simple and straightforward: Glaucoma is called “the silent thief of sight.” It’s not painful, and it is very, very gradual except in rare cases. Unfortunately, I am the living embodiment of “that’s not supposed to happen.”
Glaucoma begins by taking away your peripheral vision, and then your upper and lower fields of vision. It creates what is commonly known as “tunnel vision.” If you place empty toilet paper rolls over your eyes, you will have the approximate vision of someone with end-stage glaucoma. How does one not notice this is happening to them? The answer is ludicrously simple: You turn your head. A lot. You just don’t realize you’re doing it.
Since the day I discovered I was blind, Dr. R and I have forged a truly enjoyable relationship. Especially for him, since by now I’ve probably put his children through college and given him enough material for more than a few papers. Even though he’s sliced my eyes open, stuck needles in them and burned them, I can’t help but love him for everything he’s done for me.
A decade later, I could write a book about the many challenges I’ve faced since I was diagnosed.
There were the days of waking up with my eyes glued shut from dried blood, making me think I had gone completely blind. There were the painful surgeries that have left my eyes unrecognizable when I look in the mirror. There are the anger and depression that have driven me perilously close to destroying almost two decades of sobriety and caused me to lash out at my family and closest friends, who are guilty of nothing except loving me the most when I deserved it the least. There’s the frustration of not looking “disabled” but having my body betray me daily as I routinely stumble over (or into) something. A set of stairs or an inattentive driver may end my life at any given moment.
Even though glaucoma cannot really be prevented, I’ve been known to chastise my family and friends when they don’t go see their eye doctors regularly, even if they don’t wear glasses. Had I gone a year sooner, I might have had an extra five years of eyesight. I often think about what I will miss; would an extra five years let me see another grandchild with my own eyes instead of through someone else’s description? Would I see if my two still-single daughters look as breathtaking as their sister did walking down the aisle on their wedding days? They will, of course, and it will be heartbreaking to me if I cannot witness it.
There were days I considered hanging myself in my barn. Sometimes, if I’m being completely honest, there still are. That’s how absolutely devastating losing my vision ― and with it, in many ways, who I am ― has been.
I also feel guilty every time I need to ask my family for a ride because there is no public transportation in the rural area where I live. I feel even guiltier about the opportunities my family has given up and the many hours we’ve all worked at multiple jobs so we could pay the crippling medical debt of all those surgeries. The tens if not hundreds of thousands of dollars that could have gone toward my grandchildren’s education.
And all of this occurred while I had a “good” job and “top tier” insurance. What happens to the other 3 million Americans who are afflicted with glaucoma? What’s going to happen if that number reaches its projected mark of over 6 million in 2050, assuming that civilization has not vanished in a nuclear cloud by then?
Today, less than 10 percent of my vision remains, and even the doctor isn’t sure when I will be entirely blind. At best I have five to six years, but it could be tomorrow or in the next minute. The light fades faster every year, and with it my freedom ― freedom to work, to drive, to pick out a T-shirt, the things most people take for granted.
I’ve come to terms with my fate, to some degree, and I hope our retirement savings will get us through our remaining years. But I worry about the many Americans who don’t seek out medical care because they cannot afford it, or because they have not been properly educated about the vital importance of preventive care. I worry about America’s future if we cannot have universal health care that covers vision, and if we cannot improve our access to public transportation. We feel invincible when we’re young and healthy, but any one of us could wake up one day, go to the doctor and discover that we will soon be disabled for life.
I won’t lie and say suicide has not crossed my mind. I feel guilty (and selfish) about that as well, since there are certainly people in much worse circumstances than mine. But, as ashamed as I am to admit it, there were days I considered hanging myself in my barn. Sometimes, if I’m being completely honest, there still are. That’s how absolutely devastating losing my vision ― and with it, in many ways, who I am ― has been.
But I try to set aside such negativity. I look at what I’ve gained. Motivation. Determination. And, given the confluence of my medical issues and the current political climate, I have developed a passion that demands that I advocate for the disabled community. Politicians seem to forget that we vote.
Best of all, one week ago, I received an envelope in the mail. Even though little of my sight now remains, I could see enough to recognize the college diploma I finally earned at age 56. Summa cum laude. I’ve also been asked to join the board of a nonprofit that helps disabled students apply to college and find scholarship opportunities.
I may not see the future clearly, but I know I still have one, and I want to be here as long as I can to experience it.
For more information about glaucoma, visit Glaucoma.org.
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