World AIDS Day - 2023

So many friends I lost

I have lost many friends to HIV/AIDS, the first person I met who had HIV and was released from prison in France on compassionate grounds was trying to write his story with no idea of what time he had left. I had gone to help him out, on his computer; he passed on in late 1991.

Another was an opera buff, full of life, an exciting conversationalist with a predilection to a certain type. A very good friend that I had known for just over 3 years. When we gathered for his 37^th birthday, it was both a joyful party celebrating his survival and a sombre meeting that suggested we might not have another. A few months later, he had a two-page spread of a tribute-cum-obituary in the Guardian in 1994.

I guess from the late 1990s, people were not as scared of HIV, and medications were coming on-stream to deal with the worst vestiges of HIV or the progression into AIDS if the issues were attended to promptly.

Change and change together

In 2000, I emigrated to the Netherlands, and I also met many people who were living with HIV all around Europe. They seem to keep a low profile when they fell ill, and then they returned to the scene usually to tell of their ordeal and their escape from tragedy.

Also, especially with young men, some on receiving a diagnosis literally gave up and were ready to end their lives. I found myself in the role of someone who gave a new perspective to things that it was an opportunity to consider a new lease of life that makes a difference for themselves and others. Many of them are thriving and are thankfully still with us today.

When in September 2002, I received an HIV+ result, I vacillated between a fatalistic view of things and a progressively positive perspective. I had determined it would not be the cause of my demise much as I did not attend to the issues that might arise.

I sought a miraculous touch

I probably wanted something miraculous than consequential medical intervention. I attribute that sense to the kind of religious beliefs I had mostly been exposed to.

To that end, as my health began to deteriorate with the advent of AIDS in the time from mid-2008 onwards, I felt I was still doing fine until what presented as athlete’s foot was determined to be an aggressive skin cancer, kaposi’s sarcoma. Now, that was life-threatening, and in September 2009 I came upon the full diagnosis that was treatable if I responded to the treatment or in the words of my consultant, I probably had only 5 weeks to live.

My response to the treatment from medical observation was by its rapidity from arresting AIDS, clearing up the skin lesions and fungating tumours, and bringing my viral load to undetectable levels, miraculous. My body was saved, but everything else lost, that I had to start all over again.

What works, works well

In that time, I lost other good friends who had HIV to other attendant ailments that might or may not have been related to HIV.

I am fortunate and grateful, and the antiretroviral medication works for me, I have been on the same regimen for over 13 years with no need or inclination to change it for anything else. My biannual checkups keep a view on all the internal and organ functions allowing my medical team to address issues with alacrity.

Obviously, there is the issue of stigma usually borne of fear and ignorance, you still need to be careful who you reveal your status to, especially where you are not aware of their understanding of developments and messages that now attend to the living with HIV.

My thoughts on World AIDS Day

World AIDS Day for me is a day of recognition and remembrance; the many amazing lives lost in their prime, the stories that did not get told, and the suffering that happened in the private and public compounded by prejudice and discrimination. The triumph of humanity over adversity and the celebration of life beyond infirmity and tragedy.

Most of all, it is one of possibilities; HIV is not a death sentence, it is the beginning of the answer to the question about living a fulfilling, glorious, and impactful life. For that, I want to tell stories, even better stories, and the best stories that Brian and I can write and tell together.

World AIDS Day – To life and living well.