A Vision of the Future
A First-Person Account of the Horrors of CMV Retinitis
To see or not to see? That is the question which has been haunting me since I was first diagnosed with Cytomegalovirus retinitis three years ago.
Being HIV-positive for almost 15 years, I was more familiar with the list of potential opportunistic infections (OIs) than the lyrics to Ain't No Mountain High Enough. Even though the idea of developing any opportunistic infection was daunting, unthinkable, horrific, one stood out for me as being particularly cruel: CMV retinitis. The cold fact that this insidious virus could rob a person of his or her vision was outrageous to me. My attitude was unwavering: I swore I would rather be propped up in a corner somewhere -- as long as I could see what the hell was going on.
As if on cue, CMV descended upon me one night at a dance club, like some unwelcome suitor. The mirrored disco ball appeared to be unusually effective, for I was suddenly experiencing an extraordinarily intense light show. Being totally drug-free, I was immediately struck with that "uh-oh" feeling.
After rushing home to check my vision for "holes" using the Amsler grid, an ophthalmologist confirmed my deepest fear. It was CMV.
Oh, how I wanted to be stoic and brave like Bette Davis in Dark Victory, but instead I was terrified. I felt no intrinsic kinship with Stevie Wonder or Helen Keller. I wanted to see!
The time had come for me to get a grip, get real, and fight. A two-week induction period with IV ganciclovir (twice-a-day infusions using a port-a-cath which I had flippantly referred to as my "little insurance policy") was followed by maintenance therapy (IV infusions three times weekly). It was so disheartening to be dependent on that IV pole and that incessant drip, drip, drip.
Determined not to let CMV cramp my style, I tenaciously continued to take trips and to visit friends and family, my IV paraphernalia dutifully in tow. Although I've tripped over many an orange pylon in many a strange city, and live in constant fear of falling into a manhole, I try to carry on undaunted.
During my travels, I became quite adept at hanging my IV bags and tubes on any available hooks, hangers, and lamps. Sometimes I would catch glimpses of myself in hotel mirrors -- applying Betadine to my port, swabbing it off, or flushing it out. This person, this patient, could not be me! I might as well have been looking at that repugnant creature from Alien.
Over the past two years the retina in my affected left eye has detached twice. It was reattached once utilizing cryogenics (freezing), which didn't work. Devastated, I had to rally all the strength I could muster to try again. The second time, a gas bubble was used to push the retina against the posterior wall of my eye. The body's natural fluids eventually replaced the gas. After I suffered much trepidation, it stuck.
Eventually, though, my vision totally darkened in my left eye (I refuse to refer to it as my "bad eye"). Floaters in my right eye indicate to me that something is going to give in that eye as well, although my eye doctor says that the retina looks healthy.
When I hold my hand over my right eye, I am left in total blackness. I do not see the beautiful "blue" that Derek Jarman spoke of so eloquently. I was hoping, if there were to be any form of justice in this nightmare, that I would at least see an iridescent violet, like the color of Elizabeth Taylor's eyes. All I can discern out of my left eye is a big, black, terrifying void.
Most of the time I tend to view the world with the eye (no pun intended) of an artist, and I pride myself in being able to find profound beauty in the most diverse, arcane subjects and situations. Perhaps I am just a painter, but I would like to consider myself a bona fide artist. I suppose that's for others to judge.
Regardless, I have recently been compelled to paint a series of retinas on canvas -- large orange-red orbs floating in a jet-black sky. Like Jupiter, almost, complete with the great red spot.
My ophthalmologist gave me a slide of my CMV-plagued retina. It is eerily gorgeous -- great splotches of white splattered throughout an enormous, floating sphere. Pretty in a Ted Bundy/Jeffrey Dahmer kind of way, which is to say pretty deadly.
Most importantly, my retinal paintings represent beacons of hope to me. Oral ganciclovir has given me the freedom to get off of the IV therapy, and my new cocktail regimen has shot my T-cells up, and sent my viral load plummeting, so I have hopefully bought some time. New therapies (such as intravitreal cidofovir injections) hold promise for the future. That much I can see clearly.
Being HIV-positive has given a sense of immediacy to my entire existence. Although every moment cannot be "snapshot perfect," I constantly seek out truth and beauty as the benchmarks for the quality of my life and my art. CMV retinitis has exponentially heightened the sense of urgency with which I approach every sumptuously colored day.
This article was provided by Body Positive. It is a part of the publication Body Positive.