My Journey of Transformation
Reflections on Vision Impairment Caused by HIV
It was October 1995, that much I can tell you, but don't ask me the date or the week. Autumn was setting in and a last visual impression -- my blurred reflection on the glass doors -- was engraved in my mind. Like me, other patients sat in the waiting room of the HIV clinic. Isolated voices around me made conversation with a neighbor, but most of us pensively waited for our turn.
I wore dark brown jeans, Kelly green short sleeve pocket T-shirt, and the faded blue denim jacket with soft white cotton lining, one size too big, that allowed me to fold the cuffs. Baggy clothing was hip, but mine hung too loosely over my slender body. Time and detergent may have been unkind to these garments, but they still remain in my wardrobe and mind. Although sunsets occurred for me at four in those days, too early for any New York City season, I secretly hoped to regain healthy eyesight. It was not to happen. Soon I would be totally blind.
Life Before DarknessI had spent the early nineties redirecting my life. A career change lead me to move to Houston. When my roommate Tulio, a lawyer in our native Mexico, checked out the hotel management curriculum of the Hilton College, I went along. Eventually, he cut short his sabbatical and moved back home, but I enrolled in the graduate program. By the end of 1993, I had put the M.H.M. under my belt while working at the Medallion Hotel. My life revolved around work, school, and the gym.
This sleepy town was perfect for achieving a goal. On weekend nights after work, you "released stress" with alcohol, dance and sex, in no particular order.
In the summer of 1993, I visited New York and fell in love with the city ... and with Neil. A chance encounter at the subway platform, each of us with a group of friends on the way to MOMA, was all we needed. Good timing and chemistry drew us together from gallery to gallery until I approached him. Introductions were made and phone numbers exchanged. Eight months later, I moved to New York.
In early April 1994, after just turning 32, moving to "The City" -- as Manhattanites dub their river-bound isle -- my life seemed packed with myriad opportunities. My first "real" committed relationship and a new job in a top-notch hotel. Every evening, as I walked the two blocks from the St. Regis to the subway station, I smiled and observed pedestrians on Fifth Avenue. "If I can make it there, I can make it anywhere," I sang to myself, feeling I had arrived to "the place I want to be, the city that never sleeps." Unfortunately, after a night of pounding headaches at work, a blood test showed my low CD4 count, I had AIDS. After my initial two work weeks, I spent the succeeding two in Lenox-Hill Hospital. As it frequently happened in those days, and still today, I was tentatively diagnosed with viral meningitis.
But you had tested positive for HIV in 1990, so it was not a surprise ...
Hey! Haven't you ever heard of denial? I had taken the dreaded five pills a day of AZT in the month following my diagnosis. I consciously dismissed HIV, believing that nothing would happen to me. Exercise and a healthy diet would keep me alive.
Pain and FearIn the following months, uncertainty was omnipresent. I endured frightening medical procedures. Many days I felt psychologically overwhelmed and inundated with anxiety. This period would include: six hospital stays ranging from one to four weeks each, three surgical procedures, three diagnosed opportunistic infections, a Hickman catheter in my chest, weekly Thursday visits to the Eye Clinic and the HIV Clinic, eight months of twice-daily four-hour infusions, two chemotherapy treatments, a couple of biopsies and innumerable injections in both eyes.
In February 1995 you reported "floaters" and an ophthalmologist diagnosed CMV retinitis ...
Yes, there was a blind C-shaped dark spot around the center of my left eye; the retina was disintegrating. Four months later, the retina in the right eye was surgically reattached with silicon oil to avoid the same fate. Neither systemic infusions nor injections in my eyes, using first ganciclovir and later foscavir, succeeded in preserving my sight. In late August, the vision in the right eye vanished in a matter of days -- forever, like the closing aperture of a camera's lens. Chemotherapy damaged my kidneys, all medication had been stopped, so 24-hour hydration was necessary before using vistide, the newest drug. My kidneys never recovered and vision in the left eye grew dimmer, until within two weeks, darkness engulfed me.
Six Months in LimboIt was a great relief to be finally blind. No more appointments, no eye injections, forget about the hospital and the stress. However, I couldn't visualize a sightless life, so I was ready to "check-out." The fight was over and it was needless to continue. My family visited me, bringing along my two nephews. Upon their return home, my parents agreed that my mother should come and take care of me.
That was your father's way to show his love for you, and for your mother. Seemingly self-absorbed and totally dependent on her, he was willing to stay by himself. In their more than 30-year marriage, they had never been apart for more than three weeks. Your mother's love was evident in her will to come and care for you. Arrangements were made for her to stay with friends for six months in New Jersey, a 50-minute daily commute. Your mother's willingness to be by herself in a strange country, in a land whose language she did not speak, thousands of miles away from her home, demonstrated her devotion.
Fear, anger, resentment and sadness packed my life in those days, turning me at 33 into a controlling, moody and short-tempered curmudgeon. "All help we may receive is good," she would patiently say as I reluctantly allowed her to take me to engagements. The weekly routine included doctor's appointments, occupational and physical therapies, nurse visits, counseling, and acupuncture. Grocery shopping and other errands were her pretexts to get me out of bed. Walks around the block substituted for Valium in calming my recurrent anxiety attacks. Use of tranquilizers made her uneasy.
Winter of 1996 was one of the coldest ever and the streets were piled with snow. We walked the corridors and climbed stairwells in my seven-story building, when trapped indoors by a storm. Once at my apartment, I would rush to bed and collapse to sleep. During those endless winter days, we feigned watching television, though I rarely listened. Just a way of consuming idle time between appointments and eating small meals to appease my mother. Lack of appetite was another symptom of my depression.
Years later, people who had visited my mother and me would remark on her frequently reddened, tearful eyes. Perhaps wondering how long I would last, she carried her Rosary everywhere -- I knew it by its clicking beads -- and prayed silently.
Love Heals, Will ConquersMy youngest sister, Patricia, whose visits had become more frequent since my seroconversion, came to celebrate my birthday in early April 1996. By then, my mother's love and counseling, along with Prozac, had worked miracles. Now, I would sometimes make a witty remark or smile. I am not sure how or when the transition occurred. My mother's six-month visa would expire in early May. Her imminent departure saddened me and the prospect of trusting and relying on anybody else frightened me. Before she left, I agreed to have a home attendant, and my mother showed him how to care for me. In late June, the transformation lead my doctor to ask, "would it be time for you to start HIV meds?" For the next thirty days, I struggled adjusting to my first HAART regimen and tolerating its side effects.
Nothing compares to a mother's love for her child during crisis. In your case, it barred fear-based feelings from your heart, feelings that had accumulated throughout your life by your inability to self-love.
Indeed. With an improved outlook in life, I realized the importance of being self-sufficient. The next three years would be a race to adapt to a new life. Occupational therapy had prepared me to function at home, but I needed mobility training. I went from "just walking my dog in front of my building," as my instructor Diane recalled of our first conversation, to using public transport. I would also acquire skills and engage in activities ranging from the basic to the complex. I was determined to achieve formerly simple tasks such as working-out at the gym, as well as flying by myself to attend a conference. My freedom to travel at will restored a feeling of normality.
Tuning Into SelfThe greatest challenge you faced after blindness was to realize that you could maintain control of your life. Support from your family, especially your mother, was paramount in surviving. Even though you have accomplished and accepted much, you miss a sighted life ...
Definitely. If I said I preferred blindness, I would be lying. I miss lone walks through my city or quietly sitting on a park bench to observe people around me, to guess their nationality, to distinguish their accent or country of origin, or to speculate how they relate to each other. I long for those days watching sunsets with their pale orange, then pink and finally lavender hues. I yearn to watch the energetic movement of professional dancers. I can't say that I miss the faces of my two youngest nephews only because I never saw them, but I would love to see their likeness to family members.
Introspection has lead me to question what I visualize my life to be. To bring a greater sense of normality, I crave finding a rewarding career. I long for the job that will bring me home each night to say "Honey, I'm home!" to the new companion yet to enter into my life. Neil and I broke-up at the end of 2000 remaining best of friends, just like brothers.
"At least you don't think it's been a bitch," someone recently said, unintentionally reminding me of the significance of living this moment; enjoying God's present gift. We think with our finite mind, which may linger in the past or worry about the future.
I have managed to survive the uncertain, scary ride on life's roller-coaster, with HIV and blindness as additional challenges. While the drama originated by both crises has quieted and I wish to declare that love prevails over negative emotions in my life, the truth is that the balance of their weight shifts constantly. What is important is the awareness of my power to create my reality.
José María Medellín is the chairman of the Client and Community Advisory Board of the food-service agency God's Love We Deliver. He writes regularly for Body Positive's Spanish-language magazine, SIDAahora.
This article was provided by Body Positive. It is a part of the publication Body Positive.