Wednesday 1 December 2021

World AIDS Day 2021 - A reflection

I was unpersuaded

World AIDS Day is what I mostly celebrate in quiet contemplation rather than with fanfare and symbolism. I reflect on the life that I have lived, the good fortune that has smiled on me and the privilege of living at a time when possibilities existed long after all hope was literally lost.

I have been living with HIV as diagnosed since September 2002, I might well have had it for much longer, I cannot tell. At diagnosis, I threw caution to the winds and lived in a careless and carefree world, almost daring the worst to happen, like I was invincible and inviolable.

In mid-2005, I attended a medical check-up where the consultant proposed a regime of strong Vitamin B medication with some prophylaxis to protect my kidneys, it seemed a rather severe action to take when I was not presenting any issues. For that consultation, however, my wallet was lightened by €1,800. The knowledge and experience made me quite averse to learning more about what more I could do, including getting a second opinion.

The signs were screaming

By late 2008, the chef de reception, Javier, at one of my holiday haunts had noticed things about my pallor and wellbeing, he suggested I have my health checked out, I went through the motions but did not do a lot about it. Then in June 2009, some friends came to visit me in Amsterdam, and we went out to Kinderdijk to see the windmills, but on our way back, I was overcome with tiredness and weakness I had never experienced before, on the day they left, I broke out with shingles.

Blog - Javier

Meanwhile, I was nursing what I thought was athlete’s foot on the sole of my left foot, it was not clearing up, it was getting painful and beginning to weep. Another part of my folly kicked in, I seemed to desire more miraculous healing than a medical intervention. All that messing around in me, I still travelled to Berlin for the Christopher Street Day celebrations, then returned home to nurse myself back to a semblance of health.

Laying on of wands

In August, the foot became even more bothersome, and I was still desperately seeking some sudden rather than a gradual easing of my pain. A visit to a friend who was able to persuade me to attend her birthday, having recently had cancer in remission, she introduced me to new pain medication, which helped a bit as I endured in my foolishness.

I travelled to London in early September to attend a church service with Jerry Savelle, a word of faith preacher ministering, who laid hands on me, and I felt nothing, but it was at that point that came to my senses, I think. It was not going to be a magical moment.

I showed my best friend my foot and told him how I was suffering, not giving him the time to even say much than just acknowledge that he might just lose me. I told him; I had allowed my condition to deteriorate to a stage that I might have no other options left.

Only left with Plan B

Returning home to Amsterdam, I sorted out my insurance provisions and visited my doctor on an emergency appointment because I was in excruciating pain. She took one look at my foot and immediately said, this looks serious, I need to refer you. There and then she booked an appointment with the hospital, dressed my foot and prescribed some strong painkillers. My visit to the hospital two days later called for a further referral which was scheduled for the Tuesday after the weekend, once I told them I was HIV positive, they had reached conclusions I was yet to realise.

The HIV until September 2009 had been untreated since the September 2002 diagnosis and what was presenting was evident immunodeficiency, opportunistic infections, and the heretofore untreatable athlete’s foot, was in fact, Kaposi’s Sarcoma (a kind of skin cancer), I had full-blown AIDS.

I am fortunate and privileged

What World AIDS Day means to me is even in that extremely dire situation, I lived in a country with healthcare, service and support to attend to my immediate need, that there was an extremely high level of medical competence and expertise available to me without castigation or judgement, I just presented a challenge they had met many times before.

Fundamentally, they had confidence borne of experience and understanding drawn from the many cases and lives before mine whose contributions to the body of knowledge in the management and treatment of HIV and AIDS whether they survived or not meant that people like me had better chances of survival. I was not a lost cause.

Your miracle is in medicine

Indeed, it was a medical intervention that saved me, I did not abandon my religious beliefs, for that really helped me keep my mind and my head through the toughest times and I have told of that in many stories. I have by adversity been won to the miracle of medicine and medical expertise, why it matters, and it is not a negation or a repudiation of any other belief system, it is as much a gift to humanity as it is the emancipation and progression of civilisation.

You ask, how could someone so westernised, educated, enlightened and knowledgeable have allowed his condition to deteriorate to such a life-threatening situation? Then you begin to understand that the strengths and weaknesses of our humanity are myriad, amid apparent wisdom and knowledge can be stark ignorance, irrationality, stupidity and worse. Sometimes, we just need to forgive our own stupidity so we can learn to use a bit of wisdom.

Let’s just say, we have been steeped in such bad education that the process of unlearning to allow some new learning can be painfully difficult and consequently life-affirming. I am well, healthier than I have been in decades, on antiretroviral medication with an undetectable viral load for over 12 years. All thanks to medicine and the wealth of lives and deaths that have made it possible for all of us living with HIV to be productive members of our small and large communities. This needs to be shared around the world more.

Happy World AIDS Day!

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