50/50 @ Fifty! “A reflection on living half my lifetime HIV positive”

Part two: Resilience and recovery
To read Part One, please click here: http://aidscalgary.blogspot.ca/2012/01/5050-fifty-reflection-on-living-half-my.html

The seasons were changing from summer into autumn (my favourite season) and I was accepting the things that were continuing to affect my overall health. I did my best to remain positive however deteriorating health and energy made it increasingly difficult.

I was alone at home on the couch when an old friend came by to see how I was doing. I was angry at him for stopping by without calling first because I did not want people to see how sick I was and was fearful of gossip and having other unwanted visitors. My friend’s response to my anger was so profound they remain with me to this day. He said “You are not a quitter, you are not dead, now stop this ‘pity me’ show and get your freaking act together and fight back.” He was out the door and driving away before I got off the couch to challenge his remarks. How dare he say that to me, but he was bang on. I was not a quitter and I had to stop feeling sorry for myself, but how?

A week later I heard from the clinic telling me a new medication (Protease Inhibitors) was coming to trial and asked if I would consider taking part. I said yes, I mean what was there to lose now? I went for the blood work but failed to make the criteria for the trial and was disappointed knowing others better matched the criteria for the study. I carried on even though I was disappointed and frustrated to know there was something out there that I could not access. Two weeks later another call came from the clinic telling me there were spots now open for the trial. More blood work, another visit to the clinic and I was soon enlisted in my second clinical trial for a new treatment option. My pill count per day would reach an all-time high of 36 pills a day and include seven different medications. Some for HIV and some to treat and prevent the opportunistic infections I was at risk for or already dealing with. I started taking my new medication and found new hope and optimism for my health.

The new treatment came with some minor side effects, mostly bloating and nausea but these were nothing new; just a bit more intrusive than before. My response to the new treatment was incredibly positive and within two months my health, CD4 count, and weight all saw huge improvements. I was eating three meals a day, my energy and ability to do things for myself returned and my weight had gone from 96 lbs. to a whopping 176 lbs., the most I would ever weigh.

I called my mom, who did not believe me due to past secrets and said she would believe it when she saw it for herself. Even confirmation calls from my dad could not sway her.

The doctors and nurses were thrilled with the results they were seeing and noted that many other people in the study were seeing similar responses. Were Protease inhibitors really the “cure” everyone was daring to speak about? Sadly no, but they have saved many lives and allowed others to survive longer and healthier as a result while opening the door for greater research and development of new HIV medications and diagnostic tools. I would remain on this combination/cocktail for five years before resistance to the medications developed and a change was required.

I flew back to Ontario to be with my mom, brother and his family for the Christmas that was “supposed” to have been my last. I remember walking right past my mom in the airport without her recognizing me until I actually said “hello mom”. Her eyes started to mist and I said “let’s go before we have a scene in the airport”. She laughed and said “who cares!” We spent the month together before returning home and reveled in the honest smiles and hope in the eyes of my family. Things were okay.

I soon became bored without a job to fill my time and with my improved health I started to consider returning to work. Where do I begin and how do I explain my absence from the work force? I began slowly, first as a volunteer in my community centre, then as a volunteer with AIDS Calgary and some of the programs there. This led to employment with AIDS Calgary and soon found myself involved in HIV work that I had never considered doing. Heck, there was a time when you would not even get me through the doors of AIDS Calgary because of the fear of being identified by others. It was through this volunteering and meeting other people with HIV that I learned to let this fear go and just be me.

I became more involved in HIV advocacy, joined the SHARP Foundation Board of Directors and became a part of HIV Peer Support to help others dealing with HIV challenges and concerns. I went to my first AIDS conference and soon found myself infused with a desire and energy to make changes for the better for others living with HIV and AIDS. People were still passing away on a regular basis, unable to respond or tolerate the new medications now available. They did not work for everyone; and some of the side effects were very difficult to tolerate.

I moved into a new place with an old friend and her partner, both artists, and began to thrive in this new energy and living environment. My friendship with my ex-partner began to grow in a new and positive way as I began living again. I considered dating but was afraid of disclosing my status every time someone wanted to be with me. I decided only dating positive people would be best and to never date anyone who was not. In reality, of all those I dated, only two people were positive and my current partner is negative. I learned that many gay men were not afraid to be with someone positive. I began dating and enjoying a sexual life without so much fear.

I soon found employment that would supplement my AISH income and allow me to live a little more comfortably at the same time. I also volunteered when I could as it made me feel better about myself and that in turn lead to a healthier sense of being. I was happy, single and grew stronger learning more about myself, the person I wanted to be and what I wanted to do with my life and time. This is where my advocacy on behalf of other people living with HIV and AIDS work began and continues to this day. I was happy, life was good, no more secrets from friends and family and my health continued to improve bit by bit.

After a few years of single life dating and figuring out who I was, what I wanted and needed, I met the man who would change my life again. He came into the bar I was working and we had a nice conversation. He was tall, handsome, charming and had the greatest smile (still does). Unfortunately he also had a boyfriend and off they went after a couple beers. Isn’t that the way; the good ones are always taken I thought to myself. A few months later and now single he came back to the bar and the rest as they say, is history.
We dated for about a year, agreeing that if we were serious we should take our time and make sure we were “real”. Surprisingly I found myself again in the situation of keeping my HIV status a secret as my partner was not comfortable sharing this information with his family. I knew it had the potential to blow up in our faces at some point in time as the experiences past came flooding forward. I agreed and kept it to ourselves; for some time.

A year after dating we decided to move in together along with a great roommate and starting having the life I thought I would never get the chance to have. I had met the man who would love and support me in the same way I did him and things were really good.

Things have been great being with him and our 10th anniversary was approaching. Like all relationships there have been challenges; the greatest challenge being when his family learned of my HIV status while watching the news. I did an interview about being a long term survivor and we did not think it would make it to a channel they would be watching. Needless to say there was a great deal of concern, fear and anxiety as a result of this disclosure to his parents, two of his brothers and some nephews had seen and recognized me.

I am happy to report after the initial chaos everything settled down once we had a chance to speak to them about what was going on and explain that their son was fine, as was I. Better yet, his parents had a family doctor that explained HIV and AIDS and really assisted in eliminating their fears and giving them the facts. They are a great family and I am grateful every day that they remain a part of our lives and family gatherings. I have been so fortunate to cross paths with such incredibly open and loving people through the years.

I enjoyed a great part time job for about six years that let me build up additional work skills while still leaving time to volunteer in HIV work. I was also coming to the end of a long term project and would have to consider changing my work environment; but not my employer. I liked the job, had great colleagues to work with, a supervisor and Team Lead who were aware of my health challenges and supported my needs with a flexible schedule or questions when needing time off. I wish every employer was as supportive, informed and had policies in place for HIV as a workplace disability in order to create supportive work environments that are stigma and discrimination free.

I was considering my current employment and the fact that I was growing restless with the same kind of work daily that had me start looking at other possible employment or training options. Did I really want to go through interviews, resume writing, answering questions and reviewing employer options again? It is hard to leave a job where they have been so supportive and accommodating but I was looking at leaving my AISH benefits program for full time employment; the time had come and I felt up to the challenge.

Then the job of jobs, or as some say the “dream job” comes along and parks itself on your desk. That is what happened when I received a job posting for a full time Gay and MSM outreach worker position at AIDS Calgary. A support worker had sent it to me asking if I would look at it and comment on the description for the position and to share it with anyone I thought I might be interested. The description for the position involved all the duties I was doing as a volunteer and with the deadline a week away; I pondered and struggled before deciding to apply. Full time work after nearly 15 years of only working part time was both scary and exhilarating. I was hired a week later and began my role with AIDS Calgary in May of 2010 and continue in that position today. No regrets about deciding to leave my disability and return to full time employment in a safe and supportive environment.

Things have changed a lot over the last 25 years. New medications and access to them, services and supports continue to grow and improve, policies and procedures are being developed to educate and inform society with a better understanding of HIV/AIDS and the impacts on our lives.

Sadly there are a number of things that have not changed; stigma and discrimination remain entrenched. Many still believe only gays, sex workers, injection drug users and other negative stereotypes are at risk for HIV. Many front line workers still deny services citing they are not equipped to deal with HIV patients remain in place including the very support and health services that are supposed to help us. The stories from people living with HIV about denied health care from professionals who should know better remain a fact for many looking for health and support services and tend to entrench vulnerability, ongoing stigmatization and isolation of people living with and/or at risk for HIV infection.

I want to end this on a positive note by telling you HIV is not a death sentence and that people who test positive today can look forward to years of living well and fulfilling their dreams. Twenty four years ago I was told I would not see 30 yet here I am leading up to 50 with no sign of slowing down soon. You can have a partner, spouse, lover, children and friends who can share in your life and happiness, it may not be easy, but life never is.

“For those who have battled HIV/AIDS and been taken from us, and to all who carry on their fight.”

Cheers

M.