“A reflection on living half my lifetime HIV positive”
Part One: diagnosis to despair
Where to begin? I guess the beginning is always a good place to start. January 1st 1988 was starting out to be a good year; a fun party at the club with friends along with tequila shots and other recreational items of the time had me feeling good and dancing my ass off on the dance floor. I recognised the handsome young man cruising me from the sidelines while swaying on the speaker to the beat of the DJ sounds vibrating the floor. Eyes meet, cruising continues, drinks and conversation, along with arousal, eventually lead to my place and a great romp in the sack. A fun, quick, and hot one night stand was a great way to ring in the New Year.
I awoke the next morning; condoms unused by the nightstand and had a momentary panic attack about possible HIV transmission. I dismissed this as overreacting at the time because like many, I felt I could recognise people who were HIV positive. Besides, wouldn’t someone who was positive tell you and take the steps to protect others? Oh so naïve - I was 25 and just coming out into the gay community. But hey, everyone who had HIV or AIDS looked sick right? I mean the newspapers, news broadcasters, clubs and hospitals all had visibly ill people we knew or suspected of being positive. “They had the look”.
Mid February saw Calgary hosting the Winter Olympic Games and the city was a flurry of activities, volunteer events, athlete competitions, parties, and seemingly endless fun and excitement throughout. There was also a warm and extended Chinook that melted half the downhill race tracks and a nasty influenza leaving many incredibly ill. This was the main reason I paid no mind when I felt like I had contracted this flu. In fact, sero-conversion was happening to my immune system.
One October day I awoke to find one eyelid not able to open fully and my vision blurred as a result. I thought it was an allergy or something and let it go a day or two before eventually heading to see my doctor. He was concerned that an aneurism, blood clot or possible tumour may be the cause and quickly had me into the Foothills hospital for a series of tests before concluding nothing after 5 days. He then suggested an infectious disease specialist to me as no other explanation for my still unopened eyelid could be determined.
I then met Dr. Gill, an infectious disease specialist who asked me four very simple questions. Have you ever had a blood transfusion, have you ever shared needles with someone, have you had unprotected sex, and have you ever had sex with a man? I answered yes to two of the questions so he then asked if he could run an HIV antibody blood screen. You must specifically ask for and give permission for an HIV test to be conducted; even to this day it is not part of regular STI testing and must be specifically asked for by you.
The first week in November I got a call from the doctor’s office telling me my results were in and if I would be able to come in the next day. I asked if I could just get them over the phone and was told that they do not provide results over the phone. I agreed to come in the next day for the results. The drive to the office had me distracted, my mind racing with what if it is positive? Could one time not using a condom have been a grave mistake? Who do I tell and turn to? Stop that craziness; “what are the odds” was my final thought before stepping into the office.
Gill came in, file in hand and sat across the table from me with a bit of a smile on his face. Whew that must mean good news I thought. He looked at me and said “your test has come back positive”. Great I thought “positive means good right?” It did not; and he said it meant I had tested positive for the HIV antibodies and was HIV positive. He kept talking but I heard nothing until he asked “do you have any questions”? I asked how long, he replied “Three years likely, and five years if you are very lucky”.
There were no medications, no options for treatment. You just came in for regular blood work and monitoring until HIV ran its course to the inevitable conclusion of early death. I do not recall the drive home to this day. Shell-shocked and stunned, I informed my roommates when they asked as I came in the door. I then locked myself away for a couple days to ponder my diagnosis and began to face the losses I would experience on my journey living HIV positive. It was the start of years keeping my diagnosis a “secret” from family, friends, and colleagues within an isolated lonely existence; waiting.
Within a year of my diagnosis a medication to treat HIV became available and was considered an effective treatment for HIV infection. It was offered at my next appointment and I agreed to give this new medication a try; I mean, what did I have to lose?
The medication, AZT, was the first of many to follow in a class of medication that would change the way people lived with and were treated for HIV infection. The side effects proved overwhelming for me and I discontinued treatment. Nausea, trots, dizziness, appetite loss, fatigue, mood swings, and other side effects left me incredibly sick whereas before the medications I felt fine. I did not go back to the clinic until a health issue forced me back two years later.
At the time I had a great job, life was good, and I grew accustomed to living without a partner because I was HIV positive and knew I would never date anyone who was positive. I chose to focus on what was in my control; my job and health. I gave up dreams of owning a business, buying a home and any chance of a life with someone to love and love me. This was the reality of being positive in the 80’s, loneliness, isolation, depression, and anxiety by keeping a “secret” and hoping to never get sick.
Then I met him; the one who changed my world and had me thinking I could have a relationship with someone. How did this happen? I swore to never let this happen because I would have to tell my “secret”. I decided he was worth it and we started to date. I also started to plan the moment to tell him my secret before we became more intimate. Sadly, someone else beat me to it.
A trusted friend felt he should share my HIV status with the best friend of the man I was seeing. This friend, informed the man I was seeing what he had heard before I got the courage to do it myself. I was confronted before I could disclose, it was unpleasant and as he left I felt now everyone will know and he will never come back. My world had imploded, there was nowhere to go. I was proven wrong after he spoke to mutual friends and did some research - he chose to give our relationship a try and we enjoyed a number of years together before our intimate relationship ended and our great friendship began.
1993 was a life changing year as a bout of shingles had me back to the clinic where I began. My first clinical trial proved incredibly effective at stemming the infection quickly with no side effects. It also resulted in a change from being considered HIV positive to now having an AIDS diagnosis. I lost weight, grew anxious and started to develop health issues that forced me onto multiple medications for HIV and opportunistic infections known to develop as people progressed through years of being positive. I became depressed and non-communicative with my partner falling into cocaine use to escape the fear, anxiety, and the health issues developing.
My “secret” was out and visible to those who knew me and I soon stopped going to places where people would recognise me and “the look”. Drug use, denial, and secrets led me in a downward spiral as medications failed and few new options existed. I would have to tell family members and others that I was sick and that HIV progression was destroying my body, immune system functions, and mental health. I had seen this road before remembering friends lost to AIDS and began plans for my funeral, made a living will, and non-resuscitation order should the end come sooner than later.
I recognised that I had to tell my family what was going on before I became too sick to control my actions and interactions with those close to me. I had to begin rebuilding a relationship with my father, now long broken and left to hang in the wind with no communication for years. I would have to tell my mother, brother, and his family the news and I had no idea where or how to begin.
My father was the first person I tried to tell as he was the closest relative to me and I had to identify someone to make the important decisions that may eventually have to be made. I made several attempts that summer only to bail every time. It was Thanksgiving weekend with dad and the family where the “secret” began to unfold while talking about my dentist, a specialist in HIV dental care. I had failed to remember my step mother worked for a dentist and soon she and a colleague noted the name sounded familiar. I panicked thinking “this is it, they will figure it out and I can’t let it happen with strangers in the room”. I managed to change the subject with my “secret” intact.
Days later I got a call from my step mother; she had connected the dots. My attempts at reconnecting to family, trips without a reason, severe weight loss, medications with huge names, and my visible anxiety had raised the alarm and she finally asked the question. “Do you have cancer?” I answered no and she replied, “Then you have AIDS?” I could only reply with a muted yes.
She said she had to go and speak to my father and would call back soon. I hung up and for the first time in years stood upright as the burden of my “secret” was finally out. I also felt it was the end of any chance to reconcile with my dad once he knew my condition. Once again I was proven wrong, the second of many times to come, and in a week they bought me a plane ticket to fly home and tell my mom and other family members.
I flew home to spend the weekend with my brother, his wife, and 6 month old daughter (My niece, who I thought I would never get to see). My brother had confronted me immediately once at his house about what was wrong with me - citing I looked like hell. I told him I would inform everyone on Saturday at dinner what was going on. My mom, her husband, and my grandma came over on Saturday for dinner. Before dinner was even ready mom cornered me alone and asked “Do you have cancer”? “No, I have AIDS”, I replied. We sat and cried on the kitchen floor a bit and soon everyone knew the details. Dinner was a bust I think as I cannot remember the rest of the evening.
It was on the plane home when I began thinking what do I do now that everyone knows?
My brother, his wife, and niece visited in early spring and I got to care for my niece while they went to Banff for the day. I was thrilled and exhausted by the end of the day. It was great knowing my brother and wife understood HIV transmission and that they were not afraid to let me care for my niece.
My mother followed with a visit in August when I was at my worst; very ill, depressed, and facing my mortality all while deciding what I was going to do next. My mom along with my dad and his wife met with my doctors who informed them it was likely my last Christmas and to make plans if they wanted to do something special. It was the end of summer 1994 and I had already survived past the five year prediction given to me years earlier. My mom flew back at the end of August with me barely able to get off the couch, not eating, and weighing 98 lbs. The plans for my final Christmas with family began as I started making my final estate plans.
I could not walk a block, rake the lawn, walk my dog, or be left alone to do simple chores as black outs were happening and twice I woke up alone on the kitchen floor. Tensions were high; friends, family, and my partner were all in a heightened state of anxiety and unspoken fear of what was happening to us all. The emotion on their faces clearly visible through forced smiles as no one spoke a word about what was impacting us all. My intimate relationship with my partner had ended from the stress and challenges over the years and I stopped fighting for survival and began to accept the inevitable rapidly approaching.
I was at my mental and physical end. I had lost my ability to work and was forced to rely on an income of $800.00 a month from AISH while growing more accustomed to living with depression, daily illness, further weight loss, and the reality that my days were numbered and it was only a matter of time before the end was here. My journey’s end was on the horizon and there were things I had to do before I was gone.
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Part two: Resilience and recovery (Coming soon..)
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