Identity

Seeing Red: Looking at the World Through a Screen of Blood

What it's like to live with an incurable eye disease that will eventually make you go blind.

by April De Costa
Oct 4 2015, 6:00pm

Photo by Bonninstudio via Stocksy

My brother, grinding his way through med school, said it best: "Diabetes is a real fuck show." Not because it makes shotgunning ice cream sandwiches with wild abandon a poor choice, but because diabetes is the causal point for myriad other health issues. It's like a small rock nicking your car windshield and slowly spider-webbing across the glass over time; the longer one has diabetes, the greater assurance that it will catalyze further disrepair.

Including, for me, diabetic retinopathy. I sit typing this through a veil of blood in my left eye. I know, this sounds like the cringe-worthy lyric of a high school metal band, but it's an accurate description of my circumstances—vessels hemorrhaged in the interior of my eye after I was treated for proliferative diabetic retinopathy (PDR). I don blood-colored glasses every so often now, each instance lasting weeks, some of which leave my vision more opaque than others. The clouds of blood are below the ocular surface, and therefore invisible to anyone meeting my gaze, but I see splatters of blood, the world a gruesome Jackson Pollock, on everything I look at.

I was diagnosed with Type 1 diabetes when I was 11 and learned that it triggered PDR in May of last year. I'm nearsighted, and I had been cruising on the same prescription and lenses for too long, so I paid an overdue visit to an optometrist for a vision test and contact fitting. There had been a shift in my sight, but nothing dramatic; signs were a little fuzzier, the undefined faces across the room looked a bit blob-like. I was hunching closer to my computer screen to make out the small type. Because I noted on my paperwork that I was a juvenile diabetic, my optometrist asked to dilate my eyes to inspect for abnormal blood vessel leakage, a tell for retinopathy. Amidst tidal waves of anxiety crashing in my gut, I consented. She took turns shining a bright light into them. "Oh, wow," she whispered, her stern face half-eclipsed by the glare. She could see scenes of carnage suspended in the back of my eyes.

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Her office called in an emergency appointment for me at a nearby retina consultant. You must go today, April. This is an emergency. My friend shuttled me between appointments, as I sobbed and snotted all over his truck, still blinded by the dilation. After checking in, my wet face was placed into two large, ominous machines to take retinal photographs, which appeared straight out of an 80s dystopian film, replete with pulsating lasers. I sat alone in a dark exam room looking at the beautiful photos on the monitors, celestial swirlings of red, green, and orange—an exhibit of tiny galaxies. It felt so surreal to be admiring my damaged eyes. After a few years, the ophthalmologist joined me. He was affable, talkative in the way one is when they are overcompensating for the awkwardness of a stranger crying before them. He put my face in another ophthalmoscopy vice and gave dictation to a nurse as he examined my right eye in what may as well have been a foreign language. It was evident by his new, grave tone that some serious shit was happening in my fundi. As he studied my left eye, his voice trailed off mid-dictation, as if he was unprepared for what he had encountered.

He broke it down for me. I had proliferative diabetic retinopathy in both my eyes. He continued explaining, but my brain stuck on the word proliferative. Proliferative. I stared at the tiny universes again as I considered that word. I hadn't the faculties that day to fully comprehend all the new information regarding the fate of my vision, but have since come to understand that PDR occurs when, after many years of hyperglycemia, the ocular blood vessels become so damaged they cannot receive enough blood. They leak and generate new vessel growth—but in the vitreous cavity, where they don't belong. Additionally, the leaking becomes fibrotic scar tissue, which can tether itself to the retina, causing tractional retinal detachment. Blindness.

I just didn't want a chronic illness to be central to my life; I feared it would become my identity.

He concluded by explaining that there are three treatments, all of which I will probably undergo. First, eye injections, followed by laser treatments, finally, surgery. None of these were guaranteed to stop the damage, or prevent blindness. I cleaned up my face, and I went to work.

I called my brother that night, and I told a few of my friends. I informed my boss a few days later so he could brace for my forthcoming appointments. Famous for his delicate bedside manner, he confided in me about a friend who also suffered retinopathy and removed his eye because of the pain. He wears an eye patch now, like Snake Plissken. You could have an eye patch, too! I imagined myself as the Nadine Hurley from Twin Peaks. I canceled all of my plans requiring travel or throwing around money for the year. My insurance plan is not exactly robust; plus, I needed wheels to ping pong between my ophthalmologist, new dedicated endocrinologist, diabetes educator, primary care physician, and back to work, in my sprawling metropolis with shitty public transit.

Those first couple of weeks, my internal dialogues sounded like conversations between Jane Austen characters. I don't have secret accounts in the Caymans nor do I ski on piles of gold coins in secret vaults, and I don't really have close family, save my brother—if I go blind, how can I continue to exist independently? How will I work? Who will take care of me? I felt nauseated and horribly frightened at the prospect of devolving into some kind of sightless parasite, preying on the people I love. I lay in bed, reimagining every possible scenario in which a blind version of me could navigate the world around her. Surely I would have to move from Texas. I seriously doubt we have decent disability benefits. When will it happen, and how much will it hurt? Should I start learning braille now? I need to enjoy every visually gorgeous thing crafted by hand or nature while I still can.

It's difficult to bury this panic, but I have to, so as not to agitate my blood sugars.

We began treatment with injections of anti-VEGF drugs, which prevent unwanted blood vessel growth and leakage. This process can only be compared to A Clockwork Orange. An assistant numbs your eyes with drops and rubs Betadine over the lids. Then, the doctor props open the eyelids with a transparent, lens-shaped speculum, so they won't reflexively close when he administers the shots. The injections themselves aren't terribly painful (though I've been giving myself shots for a lifetime), but the experience is still horrifying: Your eyes are forced to watch themselves being injected, while every cell in your body is screaming CLOSE THEM.

Next, we tried lasers. My doc refers to the treatment as "getting the lasers," but the technical term for is panretinal photocoagulation (PRP). PRP was worse than I imagined. The room is almost totally dark as you sit down and lodge your head in a whole new medieval torture device, which also forces the eye open, once again paying homage to Kubrick's classic film. A tiny spotlight, which cannot be blinked it away, is then projected to the back of the eye. After this is secured, a green laser zaps at the peripheral retina to stave off errant new blood vessels. Every time the laser is triggered, there is a sound like a mosquito getting electrocuted by a bug zapper, which no episodes of How Did This Get Made on your earbuds can eclipse. The room smells like burning hair. It's painful.

I feel held hostage by diabetes.

"Getting the lasers" was not effective for me, and my ophthalmologist reverted back to the injections to treat the PDR. My appointments are now only every two months, as we put off the surgery. He wants to wait because I'm younger than most PDR patients, and the surgery will yield cataracts, which will in turn require further procedures. Most of the folks in the waiting room of his office appear to be at least 65. If the verbiage of a diagnosis is not sufficiently threatening on its own, finding yourself surrounded by septuagenarians who share it is adequately disconcerting. The coffee tables boast stamp-collecting magazines, and on TV there's usually a huckster pitching "anti-aging" snake oil. Sometimes we discuss my tattoos or talk shit about miserable daytime television. Sitting there, I feel like the oldest 35-year-old on the planet.

As Wilford Brimley demanded, all I can do is try to control my blood sugars to avoid the hyperglycemia waging a war in my eyeballs. A lack of access to health care, stress and turbulent emotions, and even periods can elevate my blood sugar, despite careful planning. Though I've been diligent this last year, my sugar levels will sometimes roller coaster. I wear an insulin pump now, which TSA continues to find vexing, but it generally helps, provided the infusion set is working properly (i.e., the catheter penetrates my skin, doesn't get pulled out in my sleep, etc). I feel held hostage by diabetes, and fear the disrepair that lies down the road, but I'm also grateful that this is the extent of damage at the moment. I'm cognizant of the fact that my diseases are peanuts compared to so many other people's health issues, and feel embarrassed complaining about the pain and cost when I imagine what others must endure.

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The thought that haunts me relentlessly, demanding shame and dread, is the knowledge that I'm complicit in my potential blindness. When I was younger and under-insured, I knew, theoretically, that retinopathy was a possible consequence of diabetes, but it felt as distant as putting money into a 401k. Eighty percent of diabetics develop retinopathy after 15 years, but I disregarded that forecast. I was immature and broke, and I just didn't want a chronic illness to be central to my life; I feared it would become my identity. (I still fear that.) I feel responsible, as though my apathy facilitated the proliferative destruction I'm now bemoaning. It's difficult to bury this panic, but I have to, so as not to agitate my blood sugars.

So, I endeavor to savor my sight: painting dumb little watercolors for me and my friends, reading like every book is about to be burned, finding pretty things to linger over, and typing away at personal anecdotes, all through a shroud of blood.

Tagged:
Health
Feminisme
disease
illness
eyes
Diabetes
proliferative diabetic retinopathy
Broadly Health