A PHA Story By Nitto Marquez

I was diagnosed positive with HIV two and a half years ago.

Despite all the optimistic news coming out of the World AIDS Conference that year, I believed there was nothing for me to be enthusiastic about. I had just taken the previous year off work to go back to school in order to strengthen my job marketability after a string of disappointing and low-paying jobs.

With an alarmingly low CD4 count, and after over a month bedridden with a severe case of shingles that left my back disfigured, I did what a lot of people living on borrowed time do. Despite the emotional roller-coaster I was going through, I was extremely focused on what I needed to accomplish. Terrified that I may not survive the next year, I began taking stock of my possessions and making a list of who should get what. I began preparing my family and friends for what I was convinced was inevitable, while fervently praying that I may be given more time to at least survive my elderly parents.

My doctor recommended aggressive medication based on the much talked about "combination cocktail" therapy. After a series of highly toxic combinations that left me weak and unable to function normal daily activities, we finally found a combination that worked! After a about a year of this therapy, my physical and mental health vastly improved and my CD4 rose by seventy counts. A year after my diagnosis I was confident enough to start seeking new employment, and quickly found a position in a computer retail company.

Looking back, it turned out to be an ill-advised move. After three months the stress of customer service plus the constant exposure to whatever flu or cold virus floating around eventually left me bedridden again, and my hard-won CD4 count was back to where it was the year before. I quit the job and had to slowly rebuild my health back up. By this time, whatever little money I had put away had been eaten up by medical expenses, despite having a great percentage of the medical costs covered by my partner's health benefits at his place of employment. A year and a severely depleted bank account later, the harsh realities of living on a fixed income started to take its toll on my mental health.

The boredom of staying at home is just alleviated by taking long walks and visiting with an increasingly shortening list of old friends and acquaintances, some of who had stopped calling since my diagnosis, unable to cope with my preoccupation with mortality. The on-going financial strain precluded most of the diversions I used to take for granted: the trips to the movies on-a-whim are now curtailed and record shopping a rare, special occasion treat.

Having grown up in a culture that equates success with a house with a big backyard and at least one automobile presents an added load to the daily strain. No house plus no car equals what? Having had no visible source of income the last couple of years, some less than sensitive acquaintances not in the know have started asking my partner if I was being kept. Fighting words perhaps, but words that strike extremely close to home. It gets harder to regain self esteem when my sense of self-respect is constantly called into question. I am sure it is no easier for my family who must constantly stand up and answer similar questions about this particular brother. The concept of a sero-positive sibling is for most people harder to admit to others than the concept of having a gay brother. To their credit most of my family has been supportive, but I am sure there are times when finding answers to ease their concerns are foremost in their minds.

The on-going concern about my own mortality takes me on a constant roller- coaster ride about my spirituality. In some ways the future, or lack of it, was clearer two and a half years ago than it is now. The recent death of my father and the subsequent depression it brought on highlighted the on-going crisis of spirituality I hardly realized I had embarked on. Having been brought up in the Catholic faith where being gay is a mortal sin, I am constantly adrift, seeking the spiritual reassurance my soul cries out for. Unfortunately my quest had been recently derailed by the shortage of pastoral care available in the community. The attempts to seek spiritual counselling for my depression about the passing of my father, and my own thoughts about my own eventual death produced no results.

I was turned down by two local AIDS service organizations because they did not have a counsellor trained to deal with my particular kind of grief. A series of calls to the chaplain of a local AIDS hospice was never returned, and I am left relying on more pharmaceutical products to cope with the depression.

The ever-growing arsenal of medications have become a problem when travelling. A recent trip to Southeast Asia was fraught with concerns about crossing immigration and customs and with fears about my luggage, and my two months' worth of medication, not arriving at the destination. A month or so into the trip, some of the medication started deteriorating from the heat and humidity, and the trip was cut short because of this new development.

Living in a big city where help for AIDS-related concerns are more readily available, and where organizations like the ASIAN COMMUNITY AIDS SERVICES are working towards addressing the needs of other cultural minorities affected by HIV and AIDS, it is sometimes easy to forget that many other PHA's living in rural Ontario, to whom English is not the first language, have no access to some of the language specific services and information the smaller agencies offer.

Today the initial crisis may have passed, but the new developments in the long-term survival of PHA's present new chapters in the struggle to win against this disease. I am thankful to have ACAS to turn to for help, and am grateful to have this opportunity to share with you a first hand account of living with this epidemic at ground zero.

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