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.

A catchup on the check-up

As things seem to be

Five weeks later than schedule, I was back in hospital for my biannual check-up which follows the usual routine of reviewing the results from tests conducted on my last visit, how I am both medically and mentally, along with other issues that might come up.

In these straitened times that even I in all my denial of reality sometimes suggests does not affect me, there is a sense of dissatisfaction in the state of affairs, a sad feeling of betrayal of confidences and trust that gave the impression of prospect where there was none, then with quite limited resources to hand, one is constrained in agency and autonomy.

It goes without saying that all these has its effects to either a greater or lesser degree on one’s health. Yet we soldier on believing that the travails of the present are temporary and would pass into the annals of recount and raconteuring with a wistful acknowledgement of how trying times have blessed us with an appreciation of the better things that have followed.

Something quite unexpected

In the review of the last battery of tests, I was unaware of an indicative test that had been conducted as neither my general practitioner (GP) nor I were informed of the result. My understanding was the test was rarely done and only annually, if necessary. However, on the consultant’s screen, I could see a third is the depreciation of an indicator that signalled my ability to fight infection with no clear reason as to why that might have happened.

It is a matter of concern, but one will have to wait for the results of tests conducted on fluids taken earlier today to determine if that was a mistake, an aberration, or a trend. With the new computer records system, you are notified of the result as soon as it is known.

Those hardworking kidneys

Beyond that, I wanted some close attention paid to my kidney function tests as the antiretroviral formulary I am on has been administered for over 12 and a half years. One of the components in the combination therapy can cause kidney impairment and I wanted that aspect monitored. However, looking at the trends in my kidney function tests over the last 4 years suggested I did not have anything to worry about.

The discussion nevertheless allows the consultant to pay a bit more heed to the indicators apart from being acquainted with the fact that I quite knowledgeable about my condition, the therapies, and developments in HIV medicine with the view to obtaining the best outcomes for my health and wellbeing.

Drink lots of aqua

Having had 3 instances where drawing blood was an ordeal, my cousin had given me some advice some months ago, so, from the moment I woke up, I was drinking lots of water, something Brian noted as unusual for me. By the time I was at the hospital this morning, I had drunk over a litre of water.

When I went to see the phlebotomist, my veins were in the Christmas spirit as for how my blood filled the vials, we could intone, “Let it flow, let it flow, let it flow.”, and soon, 7 vials were filled without the need for another prick in my arm.

Everything is electronic now, things are called up on computer and there were no forms for new appointments or prescriptions, you just had to give your name and date of birth along with some other personal information to get things done. The days was slow and tiring, in general, I felt good. I will just wait for the results for comparison and the next meet-up is in 6 months, I guess.

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

We lose more than virtue without feedback

Encouragement and peace

When the woman with the issue of blood as was related in 3 gospels of the Bible determined to touch the hem of Jesus’ garment, she believed she would be made whole. Whole, as in healed and fully restored to good health, but Jesus also gave her more than she was looking for, he said, “Daughter, be of good cheer; your faith has made you well. Go in peace.” [Bible Gateway: Luke 8:43-48(NKJV)]

Those were very comforting words; first of great encouragement and then of full absolution that she did not have to worry that she had surreptitiously acquired her healing without asking or getting permission from the healer. There can be a lesson here about our interaction with God, but this is not what the blog is about.

The drawing of virtue

In another rendition of the same story, Jesus said, “Who touched me?”, He was in the press of a crowd, thronged and jostled, everyone and anyone could have been touching him, at least, that is why Peter was baffled, that he inquired, “Master, the multitudes throng and press You, and You say, ‘Who touched Me?’” To which Jesus answered, “Somebody touched Me, for I perceived power going out from Me.” Another translation used virtue rather than power.

Everyone was touching Jesus, but this woman had a different touch of determination that drew healing power from the touch of his garment to cure at an instant a woman who had suffered a debilitating condition for 12 years.

I have none of that virtue or power, but sometimes, someone would approach from something they might have observed about me for something they need, like help, advice, comfort, encouragement, for something to quell their uneasy sense of angst, concern, or fear.

Feedback helps all

Generally, I would volunteer what I have to share in the experiences I have learnt, the choice of words I have been given to speak or write, or any other means by which I could be helpful. I guess everyone including Jesus needs some feedback and a backstory that gives context to the demand so that a full narrative of the human experience is not like a chance of fate or some hit-and-run encounter.

It is draining and exhausting when you readily and openly give that good cheer and peace into the turmoil of existence and you get nothing back in regards to whether they have been helped or not at all. Then, one does not want to become parsimonious with the blessings we have enjoyed that could be employed for the good of others, however, feedback helps encourage all participants. We are encouraged to be more helpful as much as we hope that our encouragement is of great help.

My experience giving hope

In one situation, I was approached by a young man who in his 30s was experiencing his first encounters with sex and an idea of his sexuality, he was bothered he might have contracted HIV and he was ready to do himself in if the test he was going for came back positive. Providence brought him to me to encourage him on many fronts, the necessity for the test even as he was asking if the symptoms, he was experiencing meant he had contracted HIV.

I categorically told him, that only a test could confirm his status and to go by his symptoms which could be indicative of something else would just create unnecessary anxiety. That medical result was a critical indicator of what should happen next. Then, regardless of what the test result is, it was not the end of life, rather it would mark a transition of knowledge into what to do beyond that realisation. There were examples of people who went on to do remarkable things after an HIV diagnosis.

There was extensive medical help and expertise to manage HIV so he could expect the best outcomes for both his health and his life prospects. Apart from the fact that he should not go down the avenue of blaming himself and falling into depression, but he should be prepared to face up to the interesting life ahead, that sex is there for enjoyment and not as a taboo that gives life a guilt-ridden existence.

What happened after?

I had the feeling that I had both encouraged him and given him a sense of peace, he was ready to take the HIV test and whatever the result he would make the best of it. On the day of his test, I sent him some words of encouragement, wishing him all the very best. Then I heard nothing, no communication or indication, a week passed, and it was going into the middle of the second week when I decided to send him a message.

Well, our young man was off to Malta for a holiday, and I was left none the wiser as to whether this was to celebrate or commiserate on his HIV test result or life was just going on as normal. Much as I was curious, I did not want to dampen the moment with apathy borne of my sense of losing virtue in giving encouragement but not being intimated of the consequence. I kept ruminating about it and the many other times when you give out of your deepest experiences to lift people out of despair and then just move on.

Go in peace

Now, I doubt if the woman with the issue of blood would have lost her healing if she had slunk back into the crowds and not revealed herself to Jesus and the thronging crowd. She might have had a pang of conscience, but she would have been fine. It was her prerogative to reveal or conceal herself. However, if she had concealed herself, her story would never have been told, even as Jesus knew that virtue had left him.

None of the gospel writers even bothered to ask about the woman, her name, where she was from if she had family or any other history. Her story is narrated in a few verses, she had a condition she had suffered for 12 years, she determined Jesus could help, she touched him, and she was healed. Indeed, if there is any healing we can offer humanity around us, we should continue to give liberally and generously, a lot more is contributed to that activity if we know the help offered has been helpful in any way.

As for our young friend, I do hope whatever the result, he has decided to live and live well, beyond which he can be a great blessing to others.

In Telling: Beware of pill rumours

A day in hand

A few weeks ago, I looked at my 7-day pillbox on a Friday night when I was about to take my medication and I noticed I had one more day than I should have, I know I definitely took my pills on Sunday night as that is my start of the week, but I could not account for which night until Friday that I did not take my pills, the whole process is as automatic as muscle memory, the day markings on the container had long been lost to wear and use.

That was a rarity, as in the almost 13 years that I have been on a daily regimen, I do not think I have missed taking my pills for more than 15 days in total and probably quite less than that. There was one time when I missed taking my pills for 2 nights in a row and that was out of carelessness, I was away from the weekend whilst I thought I had packed my pills, I had in fact left them on the table at home.

That was over 10 years ago, and what that taught me was always to have a spare set of pills for that emergency of being caught out by circumstances I could not control.

Pills on a rampage

My fastidiousness with the medication is a complete turn-around from before I was started on antiretrovirals, for I had many fears and concerns, initially, it was the thought of the pill burden; the number of pills I had to take any number of times in a day and for how long. I heard people were taking pills in the double figures more than once a day, the medication had to be stored in the fridge and much else, but that was HIV medication history.

I had my own baptism of fire into pill chaos, that was after I was discharged from hospital. I had a whole range of pills and medication, antiretrovirals twice a day, opioid pain management every 3 days as a patch on my skin, different pain killers and analgesics addressing different kinds of cancer pain, thrice, four times, and six times a day, some depending on need, anti-emetics, suppositories daily, then chemotherapy, every three weeks.

For the first few months, I was occupied and preoccupied, this was the world I was afraid to entertain before I fell ill, and I told a few friends as much. My reality brought the requirements for this pill Armageddon, I could understand how the prospect of what might be ahead could scare anyone, it is a complete recalibration of life and lifestyle to meet your medical needs.

Each case is unique

Then, side-effects, too much information swirling around, and I had a good few from the obvious, as nausea and vomiting, insomnia, diarrhoea, itching, bloating, tics, and other kinds of discomfort, the loss of taste for proteins, like I lost my taste for fish or eggs when I was on chemotherapy. However, it was all that preconception of entering any kind of HIV therapy that became a barrier to my seeking medical attention as soon as I should have.

I can say now that there are so many improvements to antiretroviral therapies and medications, the pill burden is much less, usually one combination therapy pill daily, the side effects are not as bad, apart from a slight high some 90 minutes after I take my medication, I am fine. I prefer the regularity and routine of pill-taking to the possibility of an injection every few months.

Blog - An injection for my pills

The pill keeps me well and healthy, my CD4 count has risen considerably, and I have had an undetectable viral load within two months of being on antiretroviral medication. I have been on the current regimen since May 2010 apart from a 2-month trial of another drug in 2018 that did not work for me.

Blog - 12 Years on ARVs

The pills are out of patent and sourced as generics, each circumstance is different, but despite what we have heard or read, we must always avail ourselves of treatments tailored to our needs rather than out of the experiences of others, no matter no similar the symptoms are.

In Telling

In Telling: The spirit that sustains

#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.

Coronavirus streets on my mind - LII

On the advent of the pandemic

In a way, I want to reflect on my experience of this Coronavirus pandemic; it has been troubling, difficult, and long. If I dwelt on the incompetence of my government that has marshalled and shepherded a death rate still unrivalled amongst its peers in Europe, I would find myself a misfit amongst other things, but I have to think for myself and those in my immediate community.

When the pandemic started, I was first classed in the highly vulnerable cohort and required to shield, but the British HIV Association came out with an update advising that those of us with an undetectable viral load and a CD4 cell count above 250, should not need to shield.

That did not make me any less vulnerable as anyone with HIV is immunosuppressed to a degree, we still need to continue our medication regimes and attend our scheduled check-ups. I had returned from South Africa by mid-January 2020 and within 2 weeks I was down with a water infection that required an albeit short hospital admission and weeks of weakness that took a while to recuperate from.

The choices that chilled

If that illness had happened in April, I would have been asked to stay at home and hope for the best when intravenous antibiotics and two sessions of electrolytes would have been needed to get me back to normal. The thought that doctors had unilaterally placed Do Not Resuscitate on a whole swathe of vulnerable patients on their register to apparently save the NHS sent a chill down my spine.

Blog - Thought Picnic: From chills to thrills in health updates

I for one kept isolated as much as I could, wore a face mask everywhere, avoided crowds and enclosed places. I even took to walking exercises as I longed for the opportunity to return to South Africa to be with Brian and that was not until mid-December. If I had not left in the week that I did, I would have been caught by the lockdown in the UK that fuelled another wave of infections and deaths.

Personal precautions, all the time

In South Africa, we had a lockdown too, with a curfew and an alcohol ban, though we could not visit the beach, we could the parks and botanical gardens which we took advantage of. Everywhere we went, we had to don facemasks, had our temperature taken, sanitise our hands and leave our contact details for track and trace purposes. There was a variant on the loose, but we were not careless about our health and welfare.

The only time we ended up in anything like a crowd was when we had to take fitness to travel PCR tests, for at that time, only one laboratory offered reliable tests accepted for travel purposes. This was before there was a vaccine and when we had not yet been offered the option to take it.

On return to the UK, I had to self-isolate at home for 10 days, but I was invited on the 5^th day for a test that proved negative and so earned an early release from my isolation. All the while, I was working from home and doing my best to thrive, despite the circumstances.

Every measure for safe living

Through this year, I had my first Pfizer jab in the last week of February, the Delta variant turned into a community threat from April into May, requiring another lockdown and in the first week of May, I got my second Pfizer jab. Much as we planned for another rendezvous in South Africa, it was beginning to look like we might not meet until the end of the year.

I had my hospital consultations for HIV in April and October, my annual flu jab and then took my third Pfizer jab or the booster shot in the second week of November. From October, we had decided December was the earliest we could meet again, and I put in my plans for holiday for the whole of December and the first two weeks of January. I would suppose I was granted the time compassionately with respect to my circumstances and the agency has provided a stand-in for the time that I am away.

Much as we are vaccinated, we are not throwing caution to the winds, as the same precautions we observed last year when there was no vaccine, we have observed diligently even as many we see on the streets seem to care nothing about the pandemic that has hardly gone away.

Calm in the face of turmoil

Just a week before my departure from England, South Africa and neighbouring southern African countries were placed on the red list that required any returnees to the UK to take up exorbitant hotel quarantine for 11 nights regardless of vaccination status, it could have scuppered our plans, but as my absence would be for 6 weeks and we were still learning about the Omicron variant, I felt that things would change during that period. I had to field many enquiries about my plans, but I remained calm and sanguine.

I changed nothing about my plans and flew out on the 3^rd of December, I am glad to note that the red list has been completely depleted from this morning and it is my hope that no radical changes occur for the rest of my sojourn here. Despite what the governments in many countries think they should be doing regarding this pandemic; I think they should be giving us advice and full information about the state of the pandemic.

Not getting too smart about it

However, I think it is now down to personal responsibility to take the utmost and particular attention to one’s health, to get vaccinated, to take precautions, and to navigate out Coronavirus streets with moderation, common sense and every safety measure to avoid contracting this virus.

Much as I cannot understand the inclination for vaccine hesitancy from the unlearned, talk less of those in the health services, I can only wonder how they expect to fight a virus with a naïve immune system, but each to their own, I know, I need vaccines against many things and some I cannot take like the yellow fever vaccine because it has a life though attenuated virus.

We are making the best of the time we have together and that is also for our health, our wellbeing and most importantly, our mental health too.

Blog - Quarantined in my self-isolation

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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