Our Stories to Tell -- The Scarlet Letters, a Nonfiction Short Story: Part II

In the January 1998 Body Positive, the author detailed his pre-AIDS life, dealing with the discovery of the disease, and his initial efforts to battle it.

Through all of this, friends were dying on both coasts. But, I still felt relatively fine. The first opportunistic infection I contracted was Kaposi's sarcoma, a rare skin cancer. I had a couple of patches on my left leg. Technically, I now had full-blown AIDS.

I went to St. Vincent's Hospital every week for a month for radiation. They put a lead mask around the affected areas while I held still. Before each visit I contemplated the future on the cross-town bus. I was holding on and still thought I could make it, since up until this time my only hospitalizations were for two hernias and one other medical problem.

I had planned to visit my mother, who had moved from Rhode Island to Tampa over 10 years ago. My brother and sisters would be there too. A "Falcone Festival?" Hardly. I felt sick on the plane, and took a Biaxin pill, a sulphur drug, to which it turned out I was allergic. By the time we landed I was too sick to wait for my sisters' flights to arrive. Fortunately my brother picked me up immediately.

In my mother's apartment, located in a large complex where she also works, my joints swelled and I turned bright red. My mother, always a worrier, knew something was up. She had my sister go through my things, record the names of my medications, and then checked the drugs out with her gay dermatologist, who was also sick. In order not to worry them unnecessarily I had planned to keep my condition a secret until I had to be hospitalized, but now the jig was up. They all must have known I had AIDS.

I received a letter from my mother calling me on the carpet but I couldn't bring myself to call her. I finally wrote, xeroxing copies to my sisters and brother and waited for their response, which, then as now, was very supportive.

In the early winter of 1996 dementia began to take over my life and cloud my memory of subsequent events.

A year or so later, while living with Barry, I took another trip to Florida, using the last of the frequent flyer miles accrued during my globetrotting business days. Upon my return to New York, Barry met me at the airport and the next day I was admitted to Cabrini Medical Center with bacterial pneumonia. My new doctor, this time chosen by Barry, was Dr. Mullen, head of Infectious Diseases. I resisted being a patient and tried to escape several times. It was a horrible experience, but after a few weeks I was released, only to return four more times in the next six months.

A month or so later I was still basically homebound with the third of a series of home health aides. I was feeling better. Barry and I planned an outing one warm Saturday in early spring. We would go shopping and have lunch with friends. My mother was coming to visit, and since her birthday was approaching I thought, considering all I had put her through, a silver AIDS ribbon from Tiffany's would be an appropriate gift. We made the purchase, had a leisurely lunch and returned home. Little did I know that later that night I would suffer the first of several seizures which would change my life forever.

Barry freaked out and called 911, and I awoke in the emergency room at Cabrini. I hadn't been there since Neil, a longtime friend and college roommate, had taken a turn for the worse. What would have happened had I been living alone? Barry may have saved my life.

My stay in the hospital was lengthy this time. I was poked and prodded and finally transferred to Rivington House, an extended-care facility for people with AIDS. After about three weeks I was released. But my joy was short-lived when the social worker introduced me to the day treatment program at Rivington, which was to become my living hell. The place was full of people to whom I couldn't relate. Most came from a different background -- IV drug users and ex-cons. Since I wasn't yet approved for Medicaid, I didn't qualify for a home health aide or ambulette transportation. Barry had to take me every morning by cab before he went to work as well as pick me up at the end of the day. Since I had so much difficulty walking I was unable to do this on my own. Peripheral neuropathy had set in. Michael's daughter, Zenia, was hired for a few weeks to assist so Barry wouldn't have to take as much time off from work.

CMV Retinitis

I had been experiencing what were called "floaters," drifting shadows across my field of vision. My regular eye exam revealed that I was suffering from cytomegalovirus (CMV) retinitis, my second opportunistic infection. No denying it, I had AIDS now. It seems I constantly needed to be reminded. Suffer I would, indeed. I was to begin three weeks of IV chemotherapy and was visited by nurses who administered intravenous medication three times a week. Fortunately, I was at home and Barry could change the bag twice a day. It was painful at times. I'm now on Cytovene, a relatively new drug, and consider myself lucky; my friend Horst died blind. The CMV is in check for now.

My many medications caused incontinence. While in the hospital I had to wear diapers, and though I eventually graduated to ladies pantyshields, I still had frequent accidents. Consequently, I knew every available bathroom between my home and my church across town, which was becoming a home away from home.

I was also impotent. Nothing aroused me now. Quite a change from the exciting sex life I had once enjoyed. Barry was understanding. We kissed and huged and sometimes fell asleep holding hands. We still do these things but I doubt if I'll ever enjoy true sexual intimacy again.

Back to Work?

Once the home health aide was finally released I was anxious to get back to work. Fortunately the doctor agreed, so I called a former headhunter and updated my resume, fudging dates to account for long lapses in employment. Revisiting my previous achievments was a pleasant surprise. Maybe this wouldn't be so hard after all.

I was quickly disillusioned when I called everyone I knew and discovered how much the job market had changed. I was absent the day they passed out computer skills, so upon being awarded a scholarship from Gay Men's Health Crisis -- a New York organization serving people living with HIV/AIDS -- I took an introductory course in computers at New York University. But this was hardly hands-on experience. I figured I was still an expert at directing photography; a computer couldn't do that. I sent resumes and promotional pieces to everyone I could think of with no luck. I was out of the loop.

Managing the house became my job -- shopping, cooking and doing the laundry were my new responsibilities, as well as continuing to take care of my health -- the doctors' visits and weekly trips to the drugstore. My medications were now reduced from fourteen to eleven daily in addition to the regimen of vitamins, and my health continued to improve steadily. My viral load remains undetectable and my T-cells remain steady. I joined a gym, exercised regularly and gained back the 20-plus pounds I had lost during the past 18 months.

Yet I was still bored. I wrote letters to art galleries, applying for assistant positions, and collected applications in retail sales. But the peripheral neuropathy, a deadening of nerve endings in my toes and feet, has left me unable to stand for any length of time. The denizens of daytime television talk and cooking shows -- Rosie, Oprah -- were my new friends and companions. I sat on the sofa, remote in hand, and waited for the cocktail hour when Barry returned from work.

October was breast cancer awareness month. I would hear stories on the news about how it had changed survivors' lives; how they looked at each new day as a gift and a new beginning. Unfortunately, AIDS hasn't had that effect on me. It's a four-letter word, my scarlet letters to bear.

But I'm not giving up. I'll try volunteering, continue to put out feelers for part-time work, and apply for a full scholarship at Parson's in hopes of reviving my career.

I just got a phone call from a gallery I had previously contacted. Who knows? Maybe God is listening after all.

Back to the February 1998 Issue of Body Positive Magazine.