World AIDS Day 2018: 35 – 30 – 30

The following blog was written by Mark Randall, HEAT Program Coordinator at HIV Community Link, and it presents Mark’s personal story of living with HIV. 

It is very surreal to be sitting down and thinking about what to write for World AIDS Day 2018. There are a number of reasons that have me experiencing moments of nostalgia, pain, loss, fear, survival and celebration as this particular World AIDS Day draws closer.

It was 30 years ago when I acquired HIV during my New Year’s Eve celebrations, and it was 30 years ago in October that I received my HIV diagnosis. There were no treatment options, I was told get my affairs in order and that I would likely be gone in the next 3 – 5 years. I went home, told a couple of friends and kept it secret from family and friends as shame and guilt prevented my ability to share this diagnosis at the time.

It was a time of loss, grief and despair, all while putting on a brave front and going about my days as if nothing was wrong and I would just wait and deal with things when they happened. Medications to treat HIV began to emerge, some with harsh side effects and some with minor improvement in delaying the process of HIV replication.

In 1994 – 1995 I began to show the early signs of HIV treatment failure and an AIDS diagnosis soon followed. I was on a number of medications upwards of 40 pills per days for treatment of HIV and prevention of opportunistic infections. I had to start making serious and emotionally draining decisions for my future.

I told my family and friends as I could no longer hide the illness and impact it had as I fell ill and onto disability no longer able to work. Depression, addiction and isolation were more the norm as I watched my relationship with my partner slip away through all the challenges the illness was having on us.

I started making my final arrangements, saying goodbye to people and preparing for the worst.

In 1996, weighing 95 lbs and barely able to climb the stairs, I received a call from the Southern Alberta Clinic about a new clinical trial using “protease inhibitors”. They felt I was a good candidate so I took the tests and began treatment. This added another 18 pills to my day, but my options were this or nothing.

In 45 days, my weight increased to 175 lbs, I was able to do many things that just weeks before I could not, including walking my dog and shoveling the walk and driveway. You never know the joy of shoveling snow until you no longer can; like many things in life. My family, friends and health care workers were amazed at the response I had, as was I. Is this the cure?, I thought to myself cautiously optimistic at the possibility.

This all led to my returning to work and community as I felt a need to give back. I got involved with AIDS Calgary (now HIV Community Link) as a volunteer; however, I did not disclose my HIV status or register as a client.

This connection to the agency and people living with HIV was the catalyst for the new life I was about to embark on – one of self-discovery, new learnings and direction, and a move into the world of activism and advocacy for other people with HIV. This led to more work-related positions over the years in the field of HIV education and prevention.

As I take the time to write this I cannot help but remember all the people who have been part of my journey from diagnosis to near death to the new life I have today and think of all that has changed for the better:

• Testing has improved and been made more readily available where people need testing to happen
• Treatments developed have improved to the point where people living with HIV, on treatment and with an undetectable viral load are no longer transmitting HIV to sexual partners; we are excited about #UequalsU
• Support for people living with HIV has grown and the voice of people living with HIV moved to the front
• Compassion and Understanding about HIV and the people living with continues to improve in communities we live
• Health service delivery continues to diversify and provide competent and more respectful care
• Vaccines are in development and clinical trial are looking better
• There are many prevention tools, with PrEP emerging as an incredible option for HIV prevention
• People living with HIV are having families, getting their education, enjoying their careers and lives in a way I would never have imagined 10 or 15 years ago.

In all this amazing stride forward to address HIV, there remain funding and resources challenges for those doing the work and one overarching challenge of HIV stigma based on homophobia, transphobia, racism and other issues including the criminalization of HIV non-disclosure.

I still hear and see people living with HIV treated as “others” or “those people” by not only services and providers that should be there to support and assist, but also by their own family, coworkers, friends and communities they identify with. The situation has improved greatly over the years but we can all continue to do better, learn and grow.

In my 30 years of living with HIV I have witnessed it all; from we have no treatment so make your final arrangements, to HIV treatment works and can prevent the transmission of HIV to sexual partners while living a full and productive life.

I could never have imagined that 30 years later I would still be here and able to share this message of Undetectable = Untransmittable.

In recognition of the people; many no longer here who have been part of my journey, treatment, losses, care, support and recovery.

Without you all, I would likely not be here today.

In gratitude for every day…

Mark

Join us at Community Voices for World AIDS Day

Tickets: communityvoices2018.eventbrite.ca