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The Big Poke
TW: Eye-related medical stuff.
Why, a sane person might ask, am I sharing personal information about my medical condition on the internet? That is an excellent question. The answer is pretty simple: having a fairly rare chronic eye condition can feel isolating, especially when it flares up during a point in time when the entire world is literally isolating. I feel defective, crappy, and alone. If sharing my story can keep even one person from feeling that way right now – heck, if it can just make them feel less alone – then it’s totally worth it.
Chapter 1 – It’s Better Than a Poke in the Eye
My dad has a catchphrase he rolls out to deal with the unpleasant things in life: “It’s better than a poke in the eye.” When I was a kid, any time I scraped my knee on the playground, it was better than a poke in the eye. In high school, if I had hours of homework or someone dinged my car, it was better than a poke in the eye. A poke in the eye was the worst-case scenario. No form of torture was worse than that. Not even eye exams.
For as long as I can remember, I have been absolutely terrified about anything getting remotely near my eyes. I couldn’t even wear eyeliner or mascara until college, and to this day nobody else can do it for me. Eye exams were the stuff of nightmares. The day I got glasses, when I was in first grade, remains a hazy memory punctuated by moments of panic and an overall feeling of utter helplessness. At six years old, you’re not exactly in command of your medical care. You can’t opt out of a procedure, or tell a doctor to go fuck himself. At least, I couldn’t, because I didn’t know the word “fuck” yet.
Plus, at that age, for most kids, there’s a certain expectation that your parents will protect you. I couldn’t understand why my mom was sitting idly by watching these strangers poke and prod and hurt me. When the doctor left the room I made her promise she wouldn’t let them touch my eyes, and that is still the biggest betrayal of my young life. Obviously she was doing it for my own good, but that explanation did not cut it back then. From that first appointment on, every visit to the optometrist was marked by tremendous anxiety and of course pain, because for some reason eye drops might as well be ice picks and they make even my own tears sting afterwards. Around the age of fifteen I put my foot down and woe be to the unwary doctor whose fingers got too close to my face.
Chapter 2 – Dinosaur Chicken Nugget
Fast forward eight years, to voluntarily sitting in the waiting room of a Lasik specialist’s office in L.A. I was nervous, but eager to see if I qualified. My mind raced ahead to all the things I could do once I no longer needed glasses: go to the beach and find my way back to my towel unaided, watch movies as I fell asleep without having to prop my head awkwardly on my arm to keep from bending my glasses, frolic in the rain without the whole world wearing polka dots. I did have one small concern, though, and that was the Dinosaur Chicken Nugget.
It had appeared in my vision the day after I chaperoned prom at the high school where I worked, a little opaque dark grey dot off to the right, like the afterimage from a camera flash. I wrote it off as a trick of the crazy disco lights at the dance at first, but in a week it had grown and morphed into roughly the size and shape of a Tyrannosaurus Rex-shaped chicken nugget being held in front of my eye, with its lower half just out of my range of vision. I knew it would go away on its own soon, I just hoped that it wouldn’t interfere with my chances of getting Lasik and living the glasses-free life I’d been dreaming of since first grade.
As soon as the nurse called me back, I felt the familiar panic rising. I dug my nails into the fleshy part of my hands just below my thumbs and focused on the sting, a method I’ve found effective when dealing with medical-related anxiety.
“Sit right here, take off your glasses, and I’m going to put drops in your eyes,” she said.
“I don’t get drops,” I informed her firmly. I find if you go in swinging, they’re more likely to let you off the hook.
The nurse looked at me quizzically, shrugged, and I could see her decide that she wasn’t getting paid enough to argue with stubborn patients and that it would be up to the doctor to coerce me. She sat me in a different chair, hauled a machine over to my face, and instructed me to look into the light. She stared at my left eye, moved the light around, took some notes – so far so good. Lasiklasiklasik I chanted in my head. She moved over to the right eye, the one with the Dinosaur Chicken Nugget.
Then she said something you never want to hear leave the mouth of a medical professional: “Oh shit.”
With those auspicious words, my Macular Degeneration journey began.
Chapter 3 – I’m 22 But My Eyes Are 70
My Ophthalmologist, Dr. Bedside (not his real name, also he has no bedside manner whatsoever and is in fact an arrogant asshole I only saw in the beginning because his arrogance is well-earned with actual skills), broke the bad news: I am the proud owner of an incurable eye condition called Macular Degeneration – of the “wet” variety – and if left untreated I’ll go blind.
There are two types of AMD (Age-related Macular Degeneration. Age-related. SURE.): dry and wet. If you have to pick one, go for the dry kind. With the wet kind, abnormal blood vessels leak blood and fluid onto the macula, which is in the back of your eye and lives on the same block as your retina. That fluid causes blind spots in the center of your vision. Fortunately, only around 10% of people with “macro”, as the kids call it, have the wet kind, and most people who develop AMD are in their 70s. I’m just super lucky I was diagnosed at the ripe old age of 22. Dr. Bedside showed me blown-up pictures of the leakage in my eyeball, and sure enough, it was shaped like a dinosaur chicken nugget.
So, what’s the treatment, you ask?
“We inject the medicine directly into the eye,” Dr. Bedside explained.
“Excuse me, are you suggesting literally sticking a needle into my eye?” I demanded.
“Yes.”
“What are my other options?”
“There are no other options.”
“I need some air,” I half-screamed, half-sobbed, and bolted from the room.
My dad picked me up half a mile down the road, still crying and shaking. He assured me we would get a second opinion, but the threat of The Big Poke still loomed. Macro can go dormant, but it doesn’t go away, and it certainly doesn’t get better by itself. My vision was worsening fast.
Chapter 4 – Going Going Almost Gone
A month later, I packed up my trusty Subaru Outback, Oscar, and drove across the country to start my new life as a PhD student in Philadelphia. I don’t recommend anyone operate a motor vehicle for a distance with a dinosaur chicken nugget-shaped splotch obstructing their vision, but I somehow made the almost-3,000 miles trek without incident despite seeing two versions of the road and the right-most line being squiggly. Oh, wait, did I not mention I also have double vision? I trained my eyes to work together out of necessity when I was a kid, but thanks to the Nugget, the vision in my right eye was changing too rapidly for the left one to be able to keep up.
If you’ve never had the experience of slowly losing your vision, I’d like to share with you a surprising realization I had: it’s a giant pain in the ass. Having a blank spot right in the middle of one eye is, well, super freaking annoying. You can’t help but try to see around it, because that’s just what you naturally do when something is blocking your vision. Take a hole punch, punch a hole in a piece of paper, tape the punched-out circle to the middle of the right lens of your favorite cheap sunglasses, and then throw those bad boys on and try to function for the day.
But the fun doesn’t stop there. Wet macro causes straight lines to be wiggly, so reading lines of text that swooped into and over each other was a special challenge, and making spreadsheets at work was a horror show. My left eye tried to compensate for its failing compatriot, while I found that manipulating my vision by pressing the area around my busted eye a certain way was kind of semi-helpful. At the end of each day, both eyes were sore and exhausted, my head hurt, and all I wanted to do was lie down with my eyes closed – but I had homework to do. I was a disaster.
Chapter 5 – The Big Poke
In October, four months after my dreadful diagnosis in California, my aunt carted me off to Johns Hopkins Wilmer Eye Institute in Baltimore to get that second opinion I’d been promised. That day was eight hours long, filled with tests and some waiting in between. I had dilation drops, numbing drops, dye injected into my arm, pictures taken of my eyeballs from every angle. My aunt and I ate snacks from the vending machine and took walks around the L-shaped reception area and tried not to think too hard about what would come next.
I would be sharing my new ophthalmologist with my grandmother, who called the doctor her Barbie doll because she was so tiny and stylish. Dr. Barbie came in, introduced herself, and announced that she had never had someone begin hyperventilating as soon as she entered the room. Welcome to my process, Doc. She reviewed my pictures on the computer while speaking into a tape recorder. I refused to look at the screen, choosing instead a carefully neutral point on the carpet, far from any stressful wavy lines that should have been straight.
Finally, Doctor Barbie turned to me and calmly explained that I would, in fact, require a needle in the eye, or the Dinosaur Chicken Nugget would become a full eclipse.
“I can’t do it. What are my other options?” I had a feeling Dr. Bedside was bullshitting me, and I was right.
“We can give you an injection in the arm. It’s not as effective, it won’t restore the vision you’ve already lost, and no sunlight can come into contact with your skin for forty-eight hours.”
After a moment of serious deliberation, I had made my choice.
“I’ll take the blindness. Thanks for your time.”
Being blind in one eye may not be ideal, but my best friend growing up’s mom had one glass eye and she was fully functional, so I wasn’t especially concerned about it. It would be more comfortable than the pseudo-blindness I was living with already.
“She’ll get the eye shot,” my aunt said.
I’ll spare you the gory details of the next half hour, which involved me sitting on a step outside sobbing and screaming that it was my body and therefore my decision. Passerby must’ve thought I was trying to kick off a pro-choice rally. I was hysterical, to say the least, and I did raise quite a few eyebrows, but I was shameless in my fearful fury. Finally, my aunt called my grandmother.
The thing about my grandmother is that she’s not very nice – a wonderful woman, certainly, with a huge heart, but not nice. She likes to remind my cousins and me that we’re overweight, terrible drivers, and incompetent bed-makers on the regular. She nags, she complains, and she takes absolutely no shit whatsoever from anyone. I already knew what was coming when I took the phone: she would tell me to quit being a baby, grow up, and do whatever Doctor Barbie told me to do because Doctor Barbie with her chic clothes and her tape recorder can do no wrong. I braced myself for the onslaught and prepared to tell my grandmother the same thing I’d been telling my aunt all day.
I don’t remember the words Mema said to me, but I’ll never forget her tone. It was so gentle it was chilling, like talking to an invasion-of-the-body-snatchers version of my grandmother. Hearing her sound loving, encouraging, and grand-maternal made me realize this was Serious Business, and I knew what I needed to do. I still didn’t like it, but I was going to do it anyway. I was getting The Big Poke.
They emptied a bottle of numbing drops into my right eye and Doctor Barbie explained that they were going to insert a metal apparatus to hold my eye open, swab my eyeball with some kind of iodine solution to clean it, insert the needle, leave it in for a few seconds, remove the needle, swab my eye again, remove the metal apparatus, and send me on my way. They couldn’t put me under for the procedure because I had to be alert and looking in a certain direction, and although I felt very strongly that I would only be capable of doing so if I had a shot or twelve of whiskey beforehand, that was off the table too.
“There’s something I need to tell you,” I said to Doctor Barbie and her assistant, Skipper.
“What’s that?” she asked.
“When I see something coming toward my eye, I move. I don’t want to, but it’s involuntary.” I thought back to my friend Carrie attempting to do my makeup before a fraternity formal in college. “I’m very concerned that you’re going to inadvertently skewer my eye like a kebab.”
“I understand. Skipper will hold your head.”
God bless you, Skipper.
Somehow, I survived. On the way home my aunt and I stopped at what passes for a Mexican restaurant in the Middle-of-Nowhere, Maryland, and ordered giant margaritas. I drank all of mine and some of hers. I don’t remember whether alcohol helped with the pain, but it helped me forget for at least a few minutes that The Big Poke wasn’t a one-and-done kind of deal; I would need another one in a month.
Chapter 6 – Aftershock
I woke up the next morning with my eye glued shut by the excess iodine solution and had a full-blown panic attack. Dr. Barbie had been very clear about what would happen if what was essentially an open wound in my eyeball got infected: another shot, this time without the numbing drops. I was terrified to touch my eye with anything. Was there a mountain spring we could drive to? Because even bottled water touches the inside of the bottle, and who’s going to vouch for that? If my eye got infected, they might as well pop it out with a spoon and throw a marble in there instead.
Mema came to my rescue with a damp paper towel and the sort of comforting and protective demeanor I would have expected from a grandma on TV, but never from her. In the months that followed, my vision improved with each injection, and so did my relationship with my grandmother. We spent a lot of time together the night before appointments and the night after. She gifted me the softest blue hand towel to unstick my eye in the morning and taught me how to care for it during the recovery period when it felt tender, itchy, and gritty all at once. Even after I moved back home to California and required shots less often, she was my rock amidst the wet macro storm. My first appointment after she passed away was very hard.
Epilogue
It’s been eight years since my diagnosis, and three since my last treatment. The darkness faded from view, wiggly lines have straightened back out. But I have a new friend now, a new dark grey spot, on the left this time. It’s small for now. Maybe it will stay that way. Maybe it won’t. The whole world is in quarantine thanks to the COVID-19 pandemic, so I can’t know for sure if my second eye has arrived to the wet macro party or not.
I cried at first, because being tethered to expensive eye treatments insurance doesn’t like to cover is stressful, and because it makes me feel defective. Then I grabbed my soft blue hand towel, dried my tears, and reminded myself that without my wet macro, I wouldn’t have had the time or the bond that I had with my grandmother. Even if I had the choice, I wouldn’t change it. So whatever challenges this new stage of the wet macro journey brings, bring ’em on.
</ XOXO>
[Photo credit: Daniil Kuželev via Unsplash]