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Survivor or Weakest Link?

A Reader Shares the Ups and Downs of Trying to Return to His "Pre-AIDS" Life

October 2001

THWACK! Something (or someone) had hit me from behind. Surprised and dazed, I realized I had been attacked. As it turned out it was only a bunch of teenagers pulling a prank, but my only pair of glasses had gone flying. Too blind, too proud and too disoriented to search for them on the dirty, dark, wet pavement, to the accompaniment of blaring rap music, I clutched my bags and tried to stumble home.

Home . . . hardly! Having to ask directions a block away from the one bedroom in Harlem I had recently rented, I fumbled for my keys and let myself in. What was I going to do? I put my confusion on hold as to whether to give up and just leave. Did I need a policeman, an advocate, a priest, or a gun!?

Fortunately reality set in. I realized that even if I did have a spare pair of glasses, the unscrupulous movers who had packed my things would certainly have left them impossible to unearth, certainly not by the light of the one naked light bulb which graced each of the two rooms I now inhabited. It was my own fault, I was depressed over my less than ideal downsized living situation and had let my defenses down. I blamed myself for a lot of things now, not the least of which was not having an extra pair of glasses. This incident was only one of several panic attacks I had endured during the past several months, all related to one small relapse I (literally) didn't see coming.

Yes, getting my pre-AIDS life back -- to some extent -- had been truly wonderful, but there had been pitfalls, ones that no doctors, counselors, support groups, or magazine articles had prepared me for. I'll back up a little now and try to continue where I left off. Was it four years ago? Gee, time flies even when you're not always having so much fun.

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Back to School?

It was Christmas 1997, and even though my companion Barry and I had been not getting along, he agreed to keep his promise and join me and my two sisters and visit my mother and younger brother in Tampa for a long overdue break. It was unseasonably cold and wet and we vacationers found little more to do than shop and go to the movies.

Shopaholics that my sisters and I are (even though my only income at the time was SSD disability insurance and anything but "disposable"), we managed to find the trendiest shopping area in town called Old Hyde Park. There was the usual Gap, Banana Republic, Pottery Barn, a new shop called Restoration Hardware and (bingo) a Polo/Ralph Lauren shop, and a beautiful, well stocked one at that!

So while my sisters went to the outlet malls, Barry and I treated ourselves to at least one high-end present. This bit of blatant consumerism made me realize what I'd been missing. I had been wrestling with the idea of going back to school to take computer design courses to revive my career as an art director, having had some painful false starts previously with these skills lacking. I saw clothing and housewares that I thought I deserved and it was clear that no one was going to get them for me but me. I vowed, if the upcoming hurricane would allow, to return to NY and seriously give going back to school a shot.


VESID: The Untold Story

I had pretty much made up my mind to take what little savings I had and use it for one semester's tuition, but I was still quite anxious about taking this risk. Many of my former co-workers had continued their careers with a few on-the-job training sessions held by their employers. My problem was that I was never "on staff" anywhere when this computer revolution happened. Could I do it?

Upon my return from Florida I called my friend and former boss from the pre-computer days at Redbook magazine. Maxine had developed her computer skills while being a stay-at-home mom. She was now the Creative Director at Parents magazine, and I knew she would give me straight answers. FINALLY, "yes," she felt I definitely had the potential to learn. She then gave me specifics on what courses to take and an estimate on how long it should take. AND (the best part) she told me to call her when I had finished, implying that she may be able to help me find work. I started looking into schools that would offer the best courses that were logistically close, considering the limitations of my still prevalent peripheral neuropathy. Also, I wasn't crazy about taking pills in public.

I signed up for a digital design seminar at Parsons, which was near our apartment. At the end of the lecture the presenter showed the group handouts in the front of the auditorium about financial aid and loans. I quickly raised my hand and asked if there was any type of aid that was not a loan, knowing that my credit wasn't good enough without a co-signer. He said there was for students with disabilities. Never was I so glad to have this disability! The brochure outlined the VESID program, something I had not heard of. This was a time when survival rates were on the rise and going back to work was a very hot topic, so why was this VESID thing such a big secret? I of course was too late to wade through their bureaucratic waters in time for the first semester. My VESID councilor was specifically trained to work with people with HIV and AIDS.

She interviewed me in depth about my previous education, how well I had done in college, my job history, even very personal questions about my family. I had been up front with Joanne about having had neurological problems at the height of my illness so was forced to undergo a four-hour psychological evaluation. Anyway, after much coercing and letter writing and portfolio reviewing the state agreed to pay my Parsons' tuition in its entirety -- up until the time I got a certificate, if needed.

Another degree would be nice I thought but once I got started it was clear that I really did not need that kind of in-depth training for the type of work that I would be doing. At my age, I did not enjoy this back-to-school experience and wanted it over as soon as possible. These latest, albeit self-imposed demands would become almost too time consuming for someone who was also trying to take care of his health and his household. There were now many take-out dinners and laundry was being sent out. An additional financial hardship for me, since Barry and I split the household costs fifty/fifty. I wrote one of many compelling letters to VESID; they agreed to reimburse me for bus fares to and from school.


Breaking Up Is Hard to Do

I have to admit that even before my health took a nose dive, I felt my feelings for Barry changing. As I mentioned in my last installment, we had an off-again on-again affair for about two years before I decided to move in with him and make the arrangement a permanent monogamous one. I came to this decision of my own free will and with no regrets -- and as Barry himself would later admit -- it was bliss. But people change, and feelings change.

What was once a passionate frequently sexually driven dynamic between two healthy red-blooded American homosexuals drifted into something less passionate, partly due to my failing health, with more weekends of quiet companionship in the country. You see, when Barry announced that he was selling a nearby income rental co-op and investing in a weekend retreat, I was pleased.

As I mentioned earlier, I'm from a small New England seaside town. I had high hopes he'd consider something near the beach and my home and friends and family. This would not be the case. Barry is from Philadelphia and had his eye on the Poconos. The fact that the cabin he had found and hoped to purchase was further from his parents in Philadelphia than from NYC didn't seem quite enough of an argument for me to give up my summer tan. One thing was for sure. If this accommodation were to transpire, I would not be able to contribute financially.

In all fairness, I think that Barry, perhaps unconsciously, was a little jealous of my close friendships from my childhood and with my family. And although he embraced both (to an extent), I think that he knew that it would be difficult to compete. This combined with my new interest in going back to work and becoming even more independent -- I could see trouble on the horizon and sought the help of a professional.

My concern over my changing feelings for Barry was just one of many issues I faced now. Also high on the priority list of things to work through was that my New York friends, now that I was no longer bedridden or at death's door, seemed to neglect me, or certainly not have time for me. Fortunately the psychiatrist that my primary care physician recommended was located almost directly across the street from our apartment so it was easy to keep my bi-weekly appointments, either on the way home from class, or the now infrequent cost-saving lunches at GMHC.


Moving On

Dr. Glass was patient and kind and certainly sympathized with the spot I was in. I was truly trapped in a relationship I now decided I did not want, and even if I did somehow get the financial means to escape, how would I deal with the guilt of leaving someone who everyone told me "probably saved my life." Over the next few months I would come to realize that being in that relationship was no longer fair to either one of us. Dr. Glass told me that he felt that I had gone "out of my way" to let Barry know how grateful I was and besides, this was not a situation in which I should have to pay this kindness back for the rest of my life.

Even more helpful than these visits to my therapist were the then weekly conversations with one of my dear childhood friends, Michael. Michael had emotional problems of his own, but he is that rare and wonderful kind of individual that can always make you feel good about yourself no matter what his mood. He is in fact, a health care professional and now, unfortunately for me, back in Rhode Island. I wished there was a way I could get my New York medical insurance to reimburse him for his many helpful phone calls.

Ironically, the deciding factor for my leaving Barry came upon the occasion of another Rhode Island friend's visit to the Big Apple. Another friend from home who, as I mentioned in my last installment, was lovers with and later on, weekend caregiver to, a NY friend, Horst, during the last (and best, I think) ten years of his life. I often thought that Barry had more in common with Ernie for this reason.

Not on this particular Tuesday night in August, however. Ernie had been invited to an art opening including an artist friend who had actually done a student film documentary on Ernie and Horst's long distance love affair, through Horst's illness and eventual demise. I was eager to meet this artist too, so I invited Ernie down to NYC to spend the night so we could both go to the opening. After the SoHo reception, we walked to the village to have a drink at a well-known piano bar. I knew that Ernie was sort of feeling his oats, if you will, finally getting over the sorrow of losing the great love of his life. I thought the bar's low key atmosphere would be, oh how should I say it, safe. Well, Ernie, true to his new found gregarious nature, immediately took up with a tourist from South Africa. Although I was quite clear about neither I nor (especially) Barry wanting another dinner guest that evening, he brought his new 'friend' to our home.

This was awkward to be sure, but this guy was obviously harmless. Ernie had used poor judgment. Barry went ballistic and threw Ernie and his friend out -- of what was supposed to be "our" home. I was terrified at such an overreaction and such anger that I stayed locked in the bathroom for most of the rest of the evening sobbing uncontrollably. I was embarrassed by Barry's uncalled-for outburst, and hoped that my life-long friend Ernie would be OK. But what I think came to a head that evening was that this man who I lived with, that everyone loved, could be irrational to the point of, I thought, violence. I had to leave, but when and how?

From that frightening evening on, things were never the same between Barry and me. I doubled my course load often not joining him on those Pocono weekends I had grown to dread so, claiming too much homework. What I really needed was the apartment to myself with no one to wait on and cook for. AND to test the social waters of New York's gay night scene after an overdue absence, something that I really missed. Barry couldn't see how either of us could be single again, for after all, as he put it, he was overweight and I was AIDS-ridden. Who else would want us?

Eventually, school was finally finished. I had done well. I would catch my breath and try to do some volunteer design work (for the publication this is appearing in) to polish my skills before starting what I knew would not be the easy task of finding employment. The challenge being, I knew I would leave Barry and would have to find an apartment, probably at a market rate rent, and would loose my Medicaid health benefit. I would have to pick up the cost of the health insurance I had the forethought to get when Blue Cross had open enrollment a few years before I went on disability. Either that or take what my new employer had to offer and hope it was as good. This meant I would have to re-enter the job force at the same level or higher (pay wise) for my new adventure to even be worth bothering with. It seemed like I would truly need a miracle. If I could find a good enough job, could I keep up the pretense of living with Barry until I had enough money saved to fly the coop?


Moving Out

Let's just say I've made peace with the feminine side of my personality a long time ago. I'm a Taurus with Gemini rising, stubborn with this "leather and lace" thing going on, but no one can say that anyone who has survived AIDS as long as I have is a sissy. So don't push me. Well that's what Barry did one night. Not that he considered me a sissy, but we were arguing and out of nowhere I just blurted out, "Fine -- then I'm leaving!" I don't think Barry really heard me or didn't want to hear me because he just wouldn't accept this. I knew that when the time came he would make it as difficult as possible for me, but I had no idea of what I was in for. He wanted me out immediately but the problem was there was really no one I felt I could impose upon. Many uncomfortable nights on the sofa, some mixed-up med dosing would follow, and in the end, I spent a couple of weekends with an ex-boyfriend who has an extra bedroom in Chelsea and away a lot at his weekend house.

It's a very painful time to recall but all I know is the timing could not have been worse. I did accept a job offer, back at the notorious Avon Products where I have gone on record as hating twice before in my career. Would three times be the charm? I had to fight for the same money I was making 10 years ago, but as long as it was full-time freelance and if I could get a tax break (like the old days) maybe I could afford a decent place to live and be free at last. And sure enough, before long my friend Wendy came through and helped me find a place. Barry made the wise decision of going to the cabin the weekend I was to vacate. I said goodbye to Stacey the cat and that was it. Sad, to say the least, but on April 2, 1998, Good Friday, I was resurrected to the 19th floor of 260 West 52nd Street.


Let the Games Begin

I was just about broke at this point but managed to purchase a bed for my new bachelor pad, which was delivered the day before my arrival. But other than that, my apartment consisted of lots of half unpacked boxes. I made the best of it and looked forward to once again, starting over. I had big plans for that little apartment.

Before the break-up I had been exercising regularly in the gym in the basement of the building I lived in with Barry with the help of my rather athletic health aide, but when computer school started, burning fat was definitely put on the back burner. So after settling into the new job, my body would be my next priority. I saw an ad in the back of a gay newspaper for a personal trainer specializing in helping people with HIV, so I called.

The following week Zack and I met. HIV-positive himself, he had given up his high-pressure job as an entertainment lawyer, went back to school, himself, and was now a certified trainer. We hit it off immediately. Zack was a nice Jewish boy, originally from Long Island, very handsome and in great shape! I thought that if he could do it, I might too. We bonded immediately and I must say I was very good about juggling my very demanding job and my workout sessions. I did what I was told and increased my weights regularly.

Zack told me that I was one of the best clients he had in terms of my progression. So why wasn't I getting any bigger? True, I probably wasn't eating enough. A late dinner after working late would always give me nightmares so sometimes I'd skip dinner altogether and just go to bed or worse, go out. Although I was taking supplements, even with my new good salary, a special new vitamin regimen that could possibly work toward reversing the still-present effects of my lipodystrophy was still out of my financial reach. I had been on antiviral medications, including Crixivan, the main culprit, for about 10 years, but insisted in a dramatic showdown with my doctor that he switch me off -- since the rest of "the cocktail" was making my peripheral neuropathy debilitating.

Also, I had not been single in ten years and although I did not know what to expect as far as the dating scene was concerned, big pecs had always been the best calling card and now biceps had become an erogenous zone as well. Zack too, was single and dating. Our sessions became a sort of therapy with our comparing notes on our respective love lives as much as physical therapy. As I said, I relished my newfound freedom and dove into the (to put it politely) "social scene" with passion.


"Dating 101"

. . . Or "not dating," I should say. Let me start my self-servitude by making one thing clear -- I have always been successful at meeting guys in gay bars. This I was relieved to find out had not changed. I know I am just an average looking guy, attractive enough, but not so much as to be too intimidating. I sort of have this built in radar ability of sizing up a crowd, identifying the possibilities and then not wasting time going to work. Of course I don't always "score," but have enough of a sense of humor about the whole game (and it IS a game) that it doesn't usually leave me devastated if I don't. As I tell my friends, "if you don't expect miracles you're not disappointed."

Now, of course there are better places to meet people than bars. I unfortunately never learned. There are traditional dating services and HIV support groups are trying to help by setting up gay as well as straight "mixers" and I swear I WILL start trying to frequent these. Don't get me wrong, I like being single. I like living alone with no one to report to or take care of, but I would like a date on Saturday night once in awhile. It seems that everyone I meet now is in an open relationship, truly committed to being promiscuous, only interested in "groups," or just plain good liars. Yes, it's true that I look for love in all the wrong places perhaps, but I was not prepared for private "poz" sex parties, safe (or not so safe) sex clubs, the Internet or especially the phone sex lines.

My friend Ernie and I got the chance to expand our social circles during a year-end trip. I had not had a real vacation in quite some time, one that did not include family, Florida and bad weather, so Ernie and I started planning a Millennium 2000 trip. I thought Palm Springs could be sort of sci-fi with the desert and all, and besides, Ernie had never been to PS. So with the help of my travel agent, the best-laid plans (to get laid?) were made. We were to stay at a gay resort that coincidentally was recommended by my first boss at Avon.

The plans were made as Christmas approached. I was not too worried about not doing the family thing this Christmas since, when the big break-up came, they sided with my ex, Barry. I know it sounds a little vengeful but you know the old saying, "hell hath no fury. . . !" My bank even gave me a little Christmas bonus to the tune of a $4,000 overdraft privilege! So we were on our way.

Ernie arrived in New York Christmas afternoon and I made dinner, joined by my new best friend Jack. The next morning we were off to the airport, expectations high. I had not been to my former second home, L.A., as a single gay man in over 10 years and was eager to see if not only the gay scene had changed but the business climate as well.

As New Year's Eve 2000 arrived, Ernie and I "revved up" just like the old days, putting on our finest disco drag and calling a cab. I had been having a little fling since night one in PS with a very cute young doctor from Toronto (also HIV-positive but not interested in having safe sex), but decided to give him the brush off for the Big Night. Just like the old days Ernie and I could have a true "girls night out." The convention center where the party was held was even decorated much like the famous Saint in New York might have been.

The crowd, what can I say? It was like "The Ice Capades" meets "The Will Rodgers Follies," Lots of silver lame cowboy hats, chaps and vests, even men and women in suits that light up with Christmas tree running lights! Mean age? Oh, I'd guess about 28. But it wasn't depressing to we 40-somethings because these guys were happy, probably because they had not lost most of the name and address entries in their electronic Palm Pilots to a deadly plague. And yes, their happiness was probably chemically enhanced but I probably would not be able to tell you the names of drugs they were on.

It didn't matter. The music (in my opinion, the best drug) was great and Ernie and I danced the New Year in, forgetting that we ever had a care in the world.

Louis Falcone previously wrote about his life for Body Positive in "The Scarlet Letters," of which this article is a continuation.


Back to the October 2001 issue of Body Positive magazine.


  
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This article was provided by Body Positive. It is a part of the publication Body Positive.
 
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