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.

World AIDS Day 2022

Beyond a fateful diagnosis

This is my 20^th World AIDS Day since my HIV positive diagnosis and I cannot tell for how long I might have contracted the virus before it was confirmed after a very developed and stringent testing regime, what matters is with a medical verification of my status, certain things needed to change.

I guess what changed the most in my life was my outlook between the idea that I might not have much time left to doing everything possible to enjoy whatever time I am fortunate to have to tell a better story beyond diagnosis.

Yet, living with HIV brought both adventure and the mundane, the mundane as in as the virus ravaged my body, I ignored what the consequences might be as year after year others noticed my apparently failing health.

The onset of AIDS

It was in the 7^th year of my diagnosis that things took a turn for the worse, early in year, much as I was in my professional peak, a dark brownish stain appeared under my left sole, something I dismissed as athlete’s foot and on inspection by a doctor in Spain, never came to much of a comment. Yet, I was conscious enough to want to hide expanding dark mark when I was reclining in a deck chair by the pool, because someone did come to ask about it.

By Spring, my energy levels were down, I spent Easter in Geneva with my best friend after which I was back on the job market. Then by mid-Summer I had a bout of shingles that came and went in 2 weeks with the blessing of no post-hepatic neuralgia, though my foot was now becoming a problem.

What was manifesting in August was a painful sore that I could not walk without my foot being heavily bandaged and no amount of painkillers could assuage the pain, I tested the limits of my ability to endure pain. I had developed full-blown AIDS presenting as Kaposi’s sarcoma, a virulent skin cancer and it was screaming on my left foot.

The legacy of the early sufferers

My gratitude and good fortune for the sadness and the celebration of World AIDS Day comes from the fact that many young men perished because of AIDS and the lack of help to treat the diseases that came as a result of contracting the Human Immunodeficiency Virus (HIV), many also had the painful lesions of Kaposi’s sarcoma leading to fully emaciated and painful deaths.

When I went into hospital delirious in pain after my doctor in the Netherlands instituted emergency measures to get me seen by specialists because on the first sight of my foot, she said, “This looks serious, I need to refer you.” The professor who came down to see me immediately said, “We have a bed for you upstairs.”

I was at the point where advancements in HIV medicine gave the consultant the confidence that medicine did not have a decade before, because he said, “We can treat this, but it depends on how you can take the treatment.” The prognosis was I would be fine if I could tolerate the treatment, or I will be gone in 5 weeks if I could not.

Indeed, my survival comes down to the many whose treatments that variously failed but redounded to the body of knowledge and expertise that grew over decades, I am one of the fortunate ones who came back from the looking death in the face to live and thrive. It always gives me pleasure to interact with medical students when they attend my biannual consultations, because I hope that in some small way, I inspire them about the power and miracle of progressive medicine that can treat diseases that were once untreatable.

On celebrating World AIDS Day

This is what World AIDS Day means to me, the need to know your status and embrace the result with promptly accessing medical options available. In 2002, you were not immediately put on antiretrovirals, even in 2005, they were thinking of treating a Vitamin B deficiency rather than the virus.

World AIDS Day is about everyone affected and infected, privately or publicly, silently or in advocacy, proudly or stigmatised, we need to come out and bring an end to the scourge of HIV whilst making the very efficacious treatments freely available to everyone touched by HIV. I am also grateful to the health services in The Netherlands and the UK, the consultants, doctors, nurses and personnel who have devoted time and resources to seeing the end of HIV.

And where would I be without the support of friends, family, neighbours, lovers, and the wider community that blessed me with their humanity and generosity, to them all, I owe a debt of unstinting gratitude. I am blessed.

Here’s to World AIDS Day 2022 because there is still much to be done and I hope that when the work is complete, it would be celebrated in memory of the many who sacrificed life and being to bring an end to HIV and AIDS.

Thought Picnic: 13 years on antiretroviral (ARV) medication

Taking treatment for HIV/AIDS

I was put on first-line antiretroviral (ARV) drugs on this day 13 years ago, on the 9^th day of admission to the hospital, seriously ill, in pain, and after a battery of tests and biopsies. At that point, the consultants and specialists had agreed on the course of treatment to address HIV that had deteriorated into AIDS with the opportunistic infection of cancerous Kaposi’s sarcoma.

Other schedules for my treatment were being planned as I was informed the next day. I started on Kaletra (lopinavir/ritonavir) and Truvada (emtricitabine/tenofovir), two of the former and one of the latter, once daily, I tolerated them well apart from occasions of diarrhoea. Within 6 weeks of that regime, my HIV viral load had been reduced to undetectable. [Drugs.com: Drug Interactions between Kaletra and Truvada]

Changes to medication

I was kept on this medication until May 2010 which was over 3 months after my last session of chemotherapy and when literally all other medications had ceased before I was put on Atripla. Today, I am on its therapeutic equivalent as branded Atripla has been withdrawn from the market because it is no longer under patent and the demand for branded formulary has fallen with the introduction of generic alternatives.

However, the more reason for writing this blog is to indicate that the antiretroviral drugs are efficacious, they work, they considerably diminish the effects of HIV leaving you with an undetectable viral load and usually an increasing CD4 cell count that gives you the ability to fight off disease.

Healthy status and medical adherence

With an undetectable viral load, you cannot pass on HIV, which has given rise to the U=U Campaign, Undetectable = Untransmittable. People of ARVs adhering to their medication and having regular check-ups on their blood chemistry and sexual health can expect to live as normal as possible lives.

This is all possible if one is under medical supervision and no decisions are made regarding the use of medication without expert instruction, even if by some good fortune, there is some indication that HIV has been eradicated by whatever means. Your HIV consultant must have fully tested and verified that claim before you change anything regarding your medication.

For me, I am a living testimony of how medicine with expertise, the support of many, the hope that helped my faith, that HIV even when you have fully developed AIDS-defining illnesses can be brought under control with medical intervention. Once again, it is not a celebration just sharing facts about my own experiences.

Blog - Reflecting on 20 years after an HIV-positive diagnosis

I was a hostage to pain

Pain was a deafening cacophony

My remembrance of this day thirteen years ago seems to be a constant rewrite of an event I have written about almost every year on the 22^nd of September because it was when I was admitted to the hospital for the treatment of AIDS presenting as fungating tumours prominently on the sole of my left foot and starting to manifest on my right sole.

The fungating tumours were Kaposi’s sarcoma, an aggressive skin cancer that without treatment could quite easily kill you off, if not for its metastasis, the pain can reach such unbearably significant levels, you might as well give up.

At the time I was admitted that Tuesday morning, the only way to alleviate the pain I was suffering was to keep my foot up, for if at any time, my foot went below my waistline when not on the hospital bed, the surge of pain was such that I winced, sometimes bellowed, and definitely cried. The strong painkillers I was on did not seem to arrest any of the pain.

Sometimes, pain does not respond

I was put on a morphine patch, but within two days, it was interfering with my digestive system, I could not keep my food down. Eventually, oxycontin seemed to work, though the nurse thought I was demanding more dosage than was recommended. Unfortunately, there is no way of measuring pain apart from what the patient tells you of how they feel. Much as I seemed to have a rather high pain threshold, considering how I have suffered before admission, I was in quite excruciating pain.

The admission brought me under the best medical supervision you could find for the treatment of HIV/AIDS in the Netherlands. The consultant spent considerable time with me, explaining what they understood of my condition and how it could be treated on the proviso that I could tolerate the treatment and consequently pull through. He also estimated with the progression of the disease, if I did not respond to treatment, I probably had 5 weeks to live.

Laughter for pain to go

Pain itself can drive you delirious, for when I left the hospital, I was on 4 different types of painkillers, each addressing a different centre of pain, the more critical one was the pain of cancer for which I was prescribed Fentanyl, and it was to deal with the pain, but I was still in pain. When I told my consultant, after surmising that it should have been sufficient, he doubled the dosage and that worked.

Yet, there were other lessons I had to learn, the Fentanyl patch was to be applied to the skin and I had it on my chest, the smooth part of my breast, but I did not know it could fall off during the 7-day application, and it did one Sunday as I returned from church. The pain came like a torrent on a vengeance, I had only one immediate solution whilst I waited for the new patch to kick in. I laughed deliriously, my ex-partner staying with me and caring for me, thought I had lost it.

The laughter was releasing endorphins and that was reducing the pain, not totally, but sufficiently. When my nurse came the next day, she said, I could get a skin patch with adhesive to keep the Fentanyl patch in place. How I was not told that before, I cannot tell.

Getting off the pain medication

By January, the cancer lesions had totally disappeared and in its place was pinkish fresh and tender skin once the necrotise skin had been cut away. It was not until April that the pain had totally gone, but I had to wean myself off the patch by halving it and keeping it on for twice the recommended dosage over another 3 months before I was totally free of painkillers.

I can only write of my own experience of pain; it was the only thing that occupied my consciousness for most of the first week in the hospital. Once I began to take my mind off it, I could also begin to see beyond my plight, I learnt a lot about understanding what facing death was and how much the body seems to endure, for strength and resilience do come from somewhere and now that you might have trained up for it.

I blogged through the time I was in the hospital, and the first blog I wrote was In hospital to kill the pain, and kill we eventually did, but it did not come easily, it told radical treatments and close to 6 months. That I am writing that story in another guise 13 years on is a testament to the human story. Many moments of pain come in to upset us, but with the passage of time, they can become just a memory and one for which one can be exceedingly grateful for coming through.

References

Blog - Reflecting on 20 years after an HIV-positive diagnosis (2022)

Blog - One Tuesday morning in September (September 2021)

Blog - A decade from AIDS to life and living (September 2019)

Blog - Hospital: Testimonies and phlebotomies (September 2016)

Blog - A certain death from cancer loomed large (September 2015)

Blog - In hospital a year on (September 2010)

Reflecting on 20 years after an HIV-positive diagnosis

 “In a perfect world, the positive would be open and the negative would be open-minded.” From a Grindr profile.

Preamble

Do not be afraid to take the test

Face up to the new reality

Avail yourself of all the help available

Do not be afraid to ask questions and seek clarification

If the medicine is not working for you, say so

It is always your body first before it is their guinea pig

It is your life, do not be ashamed of living it

Do not only survive but strive to thrive

Tell a story, your own amazing story

The day I knew

I write this today, not as a celebration, yet I am living witness to and a beneficiary of such amazing human ingenuity. Without certain advances in medicine and pharmacology, there would be nothing to celebrate.

Twenty years ago, on a cold Friday morning, I visited my local Genito-Urinary Medicine (GUM) clinic in Amsterdam, to receive confirmation that the blood test I had taken almost two weeks before had indeed tested positive for the Human Immunodeficiency Virus (HIV) and with that, alone to bear the news of my new circumstances, the 20^th of September 2002 became a date to remember.

The booklet I was given after my HIV diagnosis on 20/09/2002.

I cannot say for how long I had been infected with HIV, I had gone for a regular check-up since I was in an at-risk category and for the first time, I decided to take the HIV test, then resolved to receive and accept the result. For at other times including in the UK when I had gone for other sexual health screenings, I had either declined an HIV test or asked not to be informed of the result either way.

Medicine leads the situation

The said date comes with a medical result rather than an assumption or some premonition of my status, the science and the medicine with the essential expertise must always lead the determination and the management of any infection or disease.

Whatever the symptoms might be, until medical intervention has had its input, you do not have a diagnosis, it worries me that even as recent as 6 months ago, someone approached me to ask if his symptoms were indicative of being HIV positive just because I was also HIV positive. 

I am not a doctor, there is no way I could confirm or give any reassurances, he had to go for the test and be ready to attend to the reality of the result and the further consequences of having that possibly life-changing information.

Those that went before

How I became HIV positive is beside the point, I subscribe to the AIDS Memorial Instagram page and picture after picture speaks of the lives of people touched and lost to HIV/AIDS, amazing, talented, beautiful, extraordinary people cut down in their youth, mostly at a time when there was nothing medicine could do for them.

We celebrate them with purpose and fondness, for What Is Remembered Lives, they were people like me and literally in the same age group, I met many who passed on in the 1990s. Their experiences and lessons learnt contributed to the body of knowledge that has defined what HIV medicine has become.

Then I consider the reasons why I allowed HIV to ravage my body for 7 years before I did anything about it.

Fear

Initially, I was afraid of the truth, for if I had taken the test earlier and the result was positive, what benefits and advantages in society would I lose and how would that knowledge impact many aspects of my life? That fear is real, and it comes from an understanding of how society easily ostracises things they do not understand. Strangely, I was not afraid of dying.

Blog - In Telling: Beware of pill rumours (2022)

Stigma

When I learnt that I was HIV positive, I had to be careful with who I shared the news. The first person I told was my pastor when I returned home. When I told a friend which whom I had sexual relations going back a few years, what I got was constant abuse and vituperation, it was vicious and unrelenting, I could not tell if it was he could no longer meet me as he used to because he never once did reveal to me if he had contracted HIV along with the likelihood that I might have contracted it from him. We move.

Knowledge of what HIV was then and even now is still poor, and this is also in the LGBTQ+ community, there are many advances in medicine and drug formulary that manages this virus, but you still hear or see people use clean and by inference, you are dirty if you are HIV positive.

Worse still were people ready to use that knowledge to blackmail or threaten with exposure and harass with the law, and I have seen my share of that.

Blog - Dealing with sexuality and HIV stigma (2017)

Blog - Experience is not enough to teach you to understand things (2020)

Blog - Normalising HIV Challenge against stigma (2020)

Denial

I suppose this was my greatest undoing for when I learnt that I was HIV+, I did nothing about it, the booklet I was given along with phone numbers of doctors to contact went onto my bookshelf as I quietly contemplated what my future might be.

When people told their stories of what drugs they used and the attendant side effects, the thought that I would need to regiment my life to such strictures, privations, and suffering, did not appeal to me, I desired a more leisurely life and sought the community of similarly affected people who did not discuss it, but indulged themselves.

Blog - When I had the murderous cancer of denial (2020)

Reckoning

At the time of my diagnosis, you were not immediately put on any therapeutic treatment, certain indicators had to be met to qualify, however, by 2008, my health had begun to deteriorate so much that I seemed to ignore or just not notice what was happening. These changes were observed by those who saw me from time to time, usually from one holiday to another.

On my left sole, a patch appeared that looked like Athlete’s Foot and I treated it as such, but all fungal treatments did not alleviate the problem, it became sore and painful that I walked about with a tightly bandaged foot, still full of fear of what it might be and in denial of what it really was.

I tried everything but the medical route to address the matter to no avail, as the pain became unbearable, I made an emergency call to my doctor, as I could no longer wait for a regular appointment.

At the first sight of my foot, she immediately said, “This is serious, I need to refer you.” She dressed the fungating tumours as she made the appointment to see a specialist, the result of which was a hospital admission 6 days later with full-blown AIDS and my foot being consumed by Kaposi’s sarcoma.

Living

Once the seriousness of my situation was determined, I was admitted to the hospital on the 22^nd of September 2009 and began antiretroviral (ARV) treatment on the 30^th of September 2009. My consultant gave me a reality check. “We can treat this,” he said, “but it depends on how you tolerate the treatment, if you do, you’ll be fine, else, you probably have 5 weeks.”

I took my first course of chemotherapy on the 5^th of October 2009 and 6 subsequent courses to the 8^th of February 2010. During this course, the cancer lesions had completely healed by December and the HIV viral load was undetectable, my CD4 count which was at a nadir of 20 struggled to rise beyond 200 for years, now it is over double that.

I have taken a more studious and responsible approach to my medical situation since 2009, being quite aware of new treatments, and changes that might be beneficial and seeking the best outcomes for my wellbeing.

Beyond the medicals, I decided I would not live as if I was dying, for in whatever time I have left, I could live a fulfilling life. I have done a postgraduate course, travelled the world, fallen in love, and am planning a new chapter in life.

With reference to the booklet, I was given on the day of my diagnosis, on skimming through, the expected reactions after a diagnosis were denial, shame, anger, fear, sadness and depression, guilt, and confusion. I told the nurse who was crying at my plight, that this booklet is missing the most important message on such a life-changing event, the message of hope.

Before I put the booklet away, I wrote on it, HOPE, BELIEVE, LIVE and that is what I have done since then.

Gratitude

I am thankful for the grace of God that has sustained me, the love of my partner, Brian who in immeasurable ways has encouraged and buoyed me in difficult times much as we share the reward of happiness and companionship.

My best friend, Kola who never let me fall to the ground, the de Wolf family, my neighbours who were there to love and bear me up, John Coll, of blessed memory, and my ex-partners, Marc and Steven, still there with all consideration and friendship, old friends as Peter, Kayode, and Ola, new friends made who have brought new perspectives with the celebration of life, Bisi and Funmi.

My longsuffering parents, troopers and allies in ways beyond compare, my siblings all, prayerfully supplicating on my behalf, I suppose, there is a lot to celebrate about life itself. Yet, this story can never be fully told, at least not in a blog, it is just a sketch of what life has been.

References

Blog - A primer on cancer and chemotherapy (2009)

FOR AKIN - …on bravery, honesty and thriving. (2017)

Blog - How I battled HIV stigma (2021)

The Hospital blogs (September/October 2009)

In hospital to kill the pain

Golden red and painless

The looming abyss of a deep biopsy

Seeing hospital meals again

Getting off the pain train

Crutches on the drip

A relocation from the cacophony

Scuttling cancer with chemo

Nausea abates by suppository

A slumbering machine operator

Waiting for chemo

A life of cytostatic ostracism

I'm alive after my autopsy

One more night

Home - At last

#TheAIDSMemorial #WhatIsRememberedLives Chris Clark

 

Chris Clark (1973 - 2009)

The AIDS Memorial

I follow the Instagram page of TheAIDSMemorial where the theme of #WhatIsRememberedLives memorialises the many who lost their lives to HIV/AIDS, some many in the late 1980s into the 1990s and even after.

I lost many friends to the plague, and I also made many friends who live as witnesses to the wonders of medicine that now keeps many of us alive. Some were really close friends and their loss shook me to the core, then, one was a lover, for whom the unexpected and sudden realisation of his demise is quite difficult even as I was fighting for my own life on the diagnosis of AIDS and cancer.

Many of us in losing friends or partners of a sexual minority rarely had support or comfort for our losses and grief. Some were ostracised or excluded from the obsequies of people they loved in life out of secrecy, shame, animosity, stigma, or denial. In The AIDS Memorial page, we find an opportunity to remember and ensure those significant relationships are never forgotten.

Of loves lost

That lover was Chris Clark, and this is the only picture I have of Chris Clark (May 30, 1973 - c. October 14, 2009). We met online in late 2003 when he lived in London and I in Amsterdam, there was such an attractive quality about him, his story, his experiences, and his ambitions that drew me to him, I guess I was smitten by that personality.

We tried hard to build a relationship, but I was unsure of what it would entail, I guess I was once afraid and I was lazy about the prospect of a long-distance relationship, I should have been bolder, but I learnt hard lessons in the process. He came to stay with me in Amsterdam when I realised that my cooking was too spicy for him.

Other places we met up for snatches of affection and more were in Berlin and at Playa del Ingles, it didn't bother me footing the expense, I was never able to use my head when it came to Chris, I was all heart and no sense.

In pain and in forgiving

His mum threw him out of their home at the age of 15 when he declared his homosexuality and somehow, it fell to a stranger who took him off the streets of London and then to the United States of America where he finished school and tried a career in film and photography.

Later, he moved to Amsterdam with a partner who sadly committed suicide by drowning in a canal. Much as he had hardships and challenges in his life, the parents who rejected him as he was growing up could not trust any of his apparently responsible older siblings to care for them as they were dying, they called on the humanity of Chris to give them the send-off they desired, and he acquitted himself well in that regard.

He lost his mother in February 2007, she died in his arms and his father in December of the same year, he bore the full cost for the funeral arrangements whilst the siblings quibbled about the estate. His father left everything to him as for everything they did to him, he was the only one that could be trusted to do right. Chris had a large and forgiving heart. I tried to offer emotional support in the absence of family, we last met up greeting in the new year of 2008 in Playa del Ingles.

When he died

He became HIV+ probably a few years before I did, but there were times when he did not have enough to eat in support of his essential medication. I sometimes think he allowed his condition to deteriorate over time. We grew estranged though we maintained sporadic communication into 2009 when my health slowly descended into full-blown AIDS I was hospitalised in late September 2009.

He constantly asked after me sending me text messages I did not promptly respond to, I felt Chris was too deep in my life in some of the things he did that I needed to protect myself, my heart, my emotions, and my mental health even as I was besotted with him. He invited me to Facebook which I did not respond to until after his passing.

I left the hospital on the 9th of October 2009 and as I was settling down just over a week later, I sent a message to his mobile phone and got a shocking response from his flatmate, Chris had died at home of renal failure just around the 14th of October, a few days after my discharge from hospital.

A memorial deserved

I had many fond memories of Chris, and I grieved his passing for many years. One Christmas, I did get the Christmas tree we argued about because I did not want one and he did. It was one way of memorialising him. In fact, I grieved alone sometimes leaving a message on his Facebook on birthdays and the supposed date of his death.

I thought I would never find love again until it took something so extraordinarily special that first reminded me of Chris and then informed me that I could move on from Chris, it took over 9 years for that to happen. He had that cheeky smile, a dry sense of humour, a way of pulling at your heartstrings and a wonderful personality.

I have wanted to write this for a long time, thank you Chris for sharing some time and love with me. Akin Akintayo

I wrote an AIDSMemorial page for Chris Clark in two parts, Part I and Part II, this blog fleshes out parts that I did not include for space constraints.

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!

Blogs – The Cancer Tales.

From hopeless to hopeful

We have a bed for you

18 nights before, I arrived dying, in pain and hopelessly unaware of the seriousness of my condition. Tentatively, I had just one change of underwear but no inkling of what might ensue. From what my GP (General Practitioner) and the medical personnel saw, my condition was grave necessitating immediate admission to the hospital. It is from that assessment that Tuesday morning that the statement, “We have a bed for you upstairs,” met the urgency for action on my situation.

Much as I wanted the security and safety of the crenelations of my home, I was in no fit state to be at home except if I had a death wish. Over the period of time as I pined to return home, tests, biopsies, treatments, a course of chemotherapy, pills, suppositories, injections and unfortunately utterly tasteless food triggering emesis had done their bit, the last hurdle to clear was after-discharge care.

Before you go home

They needed a nurse to visit me at home daily to dress the fungating tumour lesions and assess my welfare. Until that was settled, I was going nowhere. Marcella had offered to have me stay with her, she already had her own ordeal with cancer and wonderful as that offer was, I just wanted to go back home to my own bed.

On Friday the 9^th of October 2009, I was discharged from the hospital, I bid my ward colleagues and the nurses goodbye and called a taxicab to take me home. To the quiet, the serenity, the comfort and the security of my own place where I could either rest, ponder, or be tormented by what future lay ahead of me. It was the beginning of my new life.

Getting to tell better stories

These blogs twelve years on from when I had to go hospital for the treatment of HIV presenting as full-blown AIDS with the opportunistic infection and cancer of Kaposi’s sarcoma are as I recall what has become part of the story of my life before I have gone to review the blogs I wrote on those particular days. My hope is that whatever we might be going through, we eventually get to tell better stories.

Blog - Home - At last

Blogs - The Cancer Tales (2009)

The twelve-year recollections

Blog - Chemotherapy was taking death to gain life – 5^th October

Blog - How I battled HIV stigma – 1^st October

Blog - We can treat this – 1^st October

Blog - 12 Years on ARVs – 30^th September

Blog - One Tuesday morning in September – 22^nd September

Chemotherapy was taking death to gain life

There is a delay

Five days before, I was put on ARVs and today, the Monday, 12 years ago, I was preparing for my first session of chemotherapy which was to be administered in the morning. The hours of the morning past and no one had come to collect me, I was waiting for chemo.

It was three hours later that I was wheeled in my bed to the oncology ward, the drug was attached to the cannula and the war against cancer wherever it might be in my body had begun. One hour, it took for the bag of reddish fluid ensconced in aluminium foil to drain into my veins.

Death and life in Caelyx

In my condition, I did not have an immune system to fight infection, that had been crippled by HIV, then chemotherapy was literally going to trash it completely. Even if the option presented itself, I did not have the presence of mind to reserve my sperm as this episode was going to make me infertile. I guess when your life is under immediate threat, you can’t be thinking of procreation.

Then, I was told this particular drug, liposomal doxorubicin (Caelyx) does not have the side effect of the loss of hair, not that I had any to lose. The aftermath of the chemotherapy was I felt bloated, it was considerable discomfort and It did not feel like it was gaseous or maybe I was too constipated for it to pass through my system.

An untouchable, I became

I returned to the ward to find out that they have put up a cordoned, not hermetically sealed, but it was indicative of me presenting a chemical hazard to anyone who approached me. Cytotoxicity being the issue, the chemotherapy whilst it killed cancer cells, also killed living cells and so it was dangerous for anyone to come in contact with any of my bodily fluids for the next 5 days.

Blog - A life of cytostatic ostracism

Through the 7 sessions of chemotherapy that I had every third Monday with a blood test the Friday before to determine how I was tolerating the treatment, after that, it was the complete absence of strength in the second to the fourth day and the emesis that got the better of me. It got to a point, I just could not keep my food down. They had something for that too.

After cancer to the future

Now, these have become stories, memories to recall and a sense of gratitude for having come through such an ordeal. Then I say, the medical cure of cancer sending it into remission is probably just part of the story, going back to life after cancer presents what I called the long tail of cancer. I lost everything, everything except hope, that was the only building block I had left to start life over again.

Blogs - The Cancer Tales (2009)

How I battled HIV stigma

In our silence of old

I saw the stigma that came with contracting HIV and met many people some of whom were my friends deserted by family and fair-weather friends to die in isolated or lonely hospices, taking that last gasp until they could hold on no more.

For many, they already faced the prejudice and discrimination for their sexuality, just as laws were being enacted for equal opportunities that stated the letter and for which there was no spirit to adhere to them. I had friends who were kicked out of their homes, sacked from jobs, banished from close-knit societies, and excommunicated from religious communities, disinherited, and shunned as if they were dead to the living. It was tough.

Then in the homosexual community, there is another kind of ostracism, the divide between those who were living like there was no tomorrow and those for whom tomorrow gave no assurance that they would still be living. Visceral hatred and abandonment in our already traumatised community, it was rotten.

My tests and my counsel

I took many HIV tests for years but gave instructions that I did not want to know the results. My results probably went into a study and since the test was at the insistence of the health and social workers, it was like I had no skin in the game, my curiosity did not lean towards knowing as if I found a world of bliss out of my ignorance.

When I did eventually go all in to find out about my status, I already suspected I had contracted HIV, but could not tell for how long. I should have curated the people to tell and not many knew, besides my pastor and a few close friends. One unguarded slip to an acquaintance I once had to kick out of my home some years before, brought vituperation, nastiness, and abuse. I ignored him even if I pretended not to be affected by his onslaught.

Battles with ignorance and denial

I had to face the stigma in myself first before I could tackle it from the outside. I am entirely responsible for my condition regardless of the backstory that might have made me susceptible to the misuse and abuse of sex. Are you so loose? That was the question from the matriarch, 19 years after the fact.

Blog - Thought Picnic: We Never Knew What a Healthy Sexual Relationship Was Because ...

It was one thing to know what condition you had, but that is quite different from understanding how it might have a consequential impact on everything that pertains to you; you can conflate denial with false invincibility and by the time you know it, you are knocking in death’s door.

HIV coursed through my body for 7 years from when I got the test results until opportunistic infections came in what looked like a wave of infirmity starting with shingles, but I was quite so immunosuppressed, what looked like athlete’s foot towards the end of spring was Kaposi sarcoma, and AIDS-defining symptom that was also cancer.

Deflecting out of embarrassment

Cancer was easier to use as a cover for everything else. I knew, my doctors knew I had full-blown AIDS, anyone else was informed I had cancer and as the treatment for Kaposi sarcoma included chemotherapy, it was just as cancer and cancer should be, there was no need to talk about HIV or AIDS. I had to grow into becoming comfortable writing, discussing, or sharing about it.

I guess it got to a point where I understood that HIV could be treated as a chronic condition quite manageable with the right therapies. Those of us living with HIV coalesced and began to give our voice to be active and contributing members of our broader community banishing the old pictures of young men dying to memorials that we still revere. Those gone before are all part of the body of knowledge and truth that has given us better outcomes.

We began to address HIV stigma

The concept of ‘Clean’ became a byword for not being HIV+, liaisons would ask if you were clean and by extension suggesting you were dirty if you were HIV+. Yet, people who know they are HIV+ probably test more frequently, are under medical supervision, and when on ARVs would most likely have an undetectable viral load. The frequency of testing also means they detect sexually transmitted infections earlier before the situation becomes chronic and get effective treatments and cures.

Blog - Dealing with sexuality and HIV stigma

Whenever anyone asks whether I am clean, I say, “Clean is when you have had a shower.” It should not refer even remotely to sexual health.

When medical science determined having an undetectable HIV viral load meant there was minimal risk of transmitting the virus, we saw the advent of the U=U (Undetectable Equals Untransmittable)

Blog - Normalising HIV Challenge against stigma

What I could have lost

My journey from talking about cancer alone to talking openly about being HIV+ with an undetectable viral load was one of development and growing self-confidence along with the desire to live my own life boldly without fear, shame, or embarrassment.

The deeper story of how my cancer was as a result of full-blown AIDS belies the fact that I had foolishly not addressed the issue early enough, hoping that some miracle and sudden change of fortunes would take everything away. I was in presumptuous denial of an existential threat to my life.

Blog - When I had the murderous cancer of denial

A miracle cure would not have served me well, and though I would have had a testimony of the power of God, I would have been excused from the human experience of knowing adversity and coming through it with my own story of life and gratitude.

This is who I am

Not that I wish adversity on anyone as a form of teaching lessons in life, but when one is met by misfortune and the acceptance of the reality of things we can control and the other things completely outside our control, we can face what is ahead of us and if good fortune brings us out to the restoration of wellness, verve, and vigour, we might find new meaning to the story of life.

I am HIV Positive, it did lead to full-blown AIDS, I had competent medical intervention that rolled back the grip of death, sent my HIV viral load to undetectable, gave me healthy prospects in life and the opportunity to find a new purpose in the joy of living. I will not be ashamed of those facts and the stigma of a projection of those whose ignorance I can help no further by allowing them to define me.

I saw this on a dating profile, years ago, “In a perfect world, the positive would be open and the negative would be open-minded.”

The Stigma Project

We can treat this

Commending medical advances

Confidence without a tinge of arrogance or boasting, just a good sense of understanding the situation and how to deal with it is one of the far-reaching lessons I learnt about the Dutch medical establishment, specifically related to my situation.

I qualify this because whilst I had the onset of AIDS presenting as cancer, some other close friends who had been diagnosed with different kinds of cancer did not make it. It was September, Dick came to visit me at home after I returned from hospital in October, that was when I last saw him, we spoke sometime in January, and he was gone by the 2^nd of February.

Marcella, a very gregarious and generous Dutch-Indonesian, I had seen in August when she persuaded me against my inclinations to attend a party at her place. I was in pain that she shared some of her painkillers with me. She had had cancer which had gone into remission, but it returned aggressively in the New Year and by October, she was gone too.

It is against this backdrop that I appreciate everyone who has ever faced cancer, because whether we live or die, their medical experience redounds to the body of knowledge that helps to define outcomes for others. Hopefully, better outcomes too. To all who have had that human cancer experience, I am exceedingly grateful.

Life or just 5 weeks

For instance, Fela Anikulapo-Kuti, the internationally renowned Nigerian musician died of an AIDS-defining disease presented as Kaposi sarcoma, 12 years before I had the same condition, and I cannot speak for the kind of medical opportunities he had then. Kaposi sarcoma lesions were for the while definitive of the onset of AIDS and it was a downward spiral from then on.

Blog - Remembering Fela (1938 - 1997) through our shared history of AIDS

However, when the professor visited my beside the day after I was put on ARVs and suggested the treatments offered theretofore were not producing the desired outcomes, he had a new plan of action and with confidence he said, “We can treat this …”, the only caveat was whether my body could tolerate the bombardment of chemotherapy, for if I could not tolerate the treatment, I only had 5 weeks at best.

Blog - Scuttling cancer with chemo

How I fared with chemotherapy

I was put on liposomal doxorubicin (Caelyx), all the basic information was given me some 4 days before my first session of chemotherapy, the only thing I was not told was about cytotoxicity, the fact that as the treatment killed living cells, anyone coming in contact with my bodily fluids, especially blood had to don biohazard clothing, and I was to be in an isolation cordon whilst in hospital.

I eventually had 7 sessions of chemotherapy on Mondays, 3 weeks apart, by the 3 session the cancer lesions had begun to disappear with the need to remove necrotised skin and allow fresh new pinkish skin to show. I tolerated it enough, though, by the fifth, I needed extra medication to deal with the emesis.

It was 12 years ago, when I was being informed of the decision to put me on chemotherapy that the consultant said, “We can treat this, it depends on how your body takes the treatment, if it takes, you’ll be fine, else you probably have five weeks to live.” That confidence added to my ability to see beyond the circumstances I was in.