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

The selfless and vicarious LGBT activism of Uche Maduagwu

Act 1 Seen Enough

It was not a few months ago that Uche Maduagwu who I do not know from Adam came out as ‘proudly gay’. He is apparently a Nigerian actor and so probably well known in Nigeria. Now, I am completely unconcerned about Uche Maduagwu’s sexuality, but when viewed in the context of Nigeria, the fact that an ordinary but albeit influential person, who is just ordinary first and whatever else and then happens to be gay, can be interesting, yet should be insignificant. [Gay Times: Nigerian actor Uche Maduagwu comes out as “proudly gay”]

In a recent Instagram post, Mr. Maduagwu now claims he is not gay, he was just fighting for LGBT rights that appear to have cost him movie roles, endorsements, and his relationship with his girlfriend. I sympathise. Now, Mr. Maduagwu may choose to be gay or not at any time of his convenience like he is assuming a movie role; many LGBT+ Nigerians do not have that luxury, it is not a fad, it is their lives.

Instagram post of Uche Maduagwu

This is our lives

LGBT+ Nigerians are also not fair-weather activists of causes that look expedient until they are at risk of losing jobs, status, relationships, or even their lives. We all have to live with our reality, the dangers and experiences, too numerous to relate, and for all the treasures in the world, we do not deny ourselves but live our truth.

Mr. Maduagwu, God bless him, can be a chameleon or an impostor, by providence or talent, he is an actor and maybe we should thank him for his selfless activism and as if we do not have enough occupying our minds for our safety and survival in Nigeria and elsewhere, his plight is an unnecessary distraction.

We wish him well, but whether he will be forgiven for earning notoriety at our expense, time will tell. Sometime in the future, he might have an epiphany that he is a proud person, and not soon after denying his personhood to be something yet undefined but even more interesting that we cannot ignore his method, his acting and the genius we will never believe he was.

When I had the murderous cancer of denial

When I was in denial

Amongst the many other things, I find to do, this September week usually starting from the 20^th day of the month and on to the end does provide a time of reflection in many ways. Writing about the 20^th, I remember it as the day I got an HIV positive result confirmed from the week before in 2002.

As I reflect on the circumstances, it is quite strange that for years I had been taking tests but expressly said I did not want to know the result. How that could have served me any good, I cannot say, but either way, my wishes were respected in both the UK and the Netherlands. Whether that would have been negligent and unethical on the part of the medical personnel, if any of the previous tests proved positive, I cannot tell.

It was another 7 years before that diagnosis began to run its full effects on my physiology, my immune system was completely compromised, and I was now vulnerable and presenting opportunistic infections. That at the end of June, the loudest alarm bells of impeding danger was ignored is still something that bothers me.

When I was foolish

Suffice it to say, I was looking for a miracle, a sudden and spiritual Eureka moment when something I did out of faith or someone renowned of the calling would lay hands on me and I would be miraculously healed. Though, the healing would have been suspect as I had not to that point given myself to essential medical scrutiny first to confirm the conditions manifesting in me, before a confirmatory check proved the fact.

I was looking for a shortcut, absolving myself from any responsibility for my situation and in denial of the seriousness of my condition even as others were beginning to notice the rapid deterioration of my health. It took the better part of 3 months from the 22^nd June when I came down with shingles through July and August as fungating tumours formed on the sole of my left foot with associative pain that the only way I could walk on the foot was to have it firmly bandaged up, for me to come to my senses in a way.

When I was persuaded

The process eventually got me visiting my doctor who then expedited referrals to consultants that culminated in my admission to the hospital in the 22^nd of September, after which I began to understand what I was facing and the graveness of my situation.

There are many factors that contributed to my reticence, I was wishing and hoping, it would just go away, the real danger was, I could just have died, foolishly, stupidly, ignorantly, and unnecessarily, when there was much medicine could have done to help me.

Those factors, I need to find time to articulate, products of positive and negative influences, incomplete understanding of ideas, principles, doctrine and spiritual matters, religious naivety and the convenience of sticking my head in the sand.

The 18 nights I spent in the hospital 11 years ago are journaled and bookmarked in The Cancer Tales section of My Blog Themes.

 

World AIDS Day: From a person with AIDS to just living with HIV

The result

One morning thirteen years ago on the 13^th, he walked into the clinic almost sure that the news he did not want to accept might be the truth, will be the news he will hear.

For years, he took the test but always asked that he never be informed of the result, the burdens of many enforced and reinforced beliefs militating against the workings of a rational mind until a time he could not escape the truth of what it might be.

That first result was yet tentative, like the first urine sample of a doping test is, he had to wait another week for the confirmation of what had been learnt. On the 20^th of the month, a day that seems to have gained a coincidence of significances in a lifetime, it was crunch time.

The power of hope

When his pastor asked of what might be going through his mind, he averred that he was ready for what the result might be, life had to go on from knowing the truth about the present.

The nurse holding the paper of the confirmation was distraught and literally crying, it was hard enough that he was there to receive news that they usually advice be received in the company of friends or confidant, he was alone, absorbing the news and comforting the nurse.

As he left the clinic, he was handed a pamphlet that was to identify with those who had that result, the covered the emotions of anger, despair, denial, depression, pity and much else, but it did not include the word that would have mattered the most to anyone with such a diagnosis – Hope!

Without hope, there can never have been another day, yet he put it behind him and continued life as if it mattered little. He returned to university, embarked on new journeys, made new friends, even found love, the love of a sort that was trouble and fun, crazy and really crazy, but love it was.

Daringly stupid

Years passed and he fell into the delusion of being inviolable and beyond vulnerable, yet coursing in his veins was a sentence of death, one that was coming and that which others began to see. He, however, lived in denial and his health began to deteriorate and rapidly so.

Soon, he sought succour in alternative medicine and the possibility of a miracle, he was seeking a health jackpot to spring him out of the grip of death. He became desperate and grasping, as pain took a hold that was indescribable.

Then like a slap in the face, his reality dawned and he when to see his doctor, she did not give the signs a second look, before a referral, then another referral and by the third within a week, he was in hospital a very sick man given just five weeks to live if the medicine did not take.

From PWA to PLWHIV anew

At that point, he was a Person With AIDS, his immune system so seriously compromised, it was the miracle of medicine that brought him back from the brink, the same manifestation of complications due to HIV that killed Fela Anikulapo-Kuti some 12 years before.

He recovered and recovered well to tell the tale of facing death square in the face and returning to dance in the land of the living.

Many lessons learnt:

• ·         Always go for check-ups.
• ·         Take the results of your check-ups seriously if you must go on treatment, do it as soon as it is recommended.
• ·         Own your condition, your situation and your decisions.
• ·         Medicine knows a lot more about these things, avail yourself of the science and the knowledge fully.
• ·         Never stop your medication without medical advice, you are not cured until medicine gives the final verdict – your pastor is NOT your doctor.
• ·         The medicine contains the virus and allows your immune system to recover so that you are not beaten by opportunistic infections.
• ·         There is always help for your condition, social, emotional, obviously medical and much else, despite the stigma that associates with being a Person Living With HIV.
• ·         Seek therapy at any opportunity, it works.
• ·         Things might be difficult after an HIV diagnosis, but it is not the end of life, see it as the beginning of a new life, knowing your vulnerabilities and gaining new strengths.
• ·         Your friends are closer than you think they are.

And finally, until you’re dead, you’re still living and if you are still living, you’re here to say once again – Happy World Aids Day!

Nigeria: Deploying the Piggyback Exculpation Device

Behind every man

Dr Goodluck Jonathan, the erstwhile President of Nigeria who was democratically pensioned off in March 2015 has some very powerful women in his cabinet.

Diezani Alison-Madueke, the Federal Minister of Petroleum Resources from April 2010 until May 2015 and Ngozi Okonjo-Iweala, the Federal Minister of Finance and the Coordinating Minister for the Economy from July 2011 to May 2015.

Whilst these women apparently had the chops to hold their positions without fear of sack and redeployment and could be said to have maintained the highest confidence of the president that they were hardly affected by the many cabinet reshuffles during his tenure, the perception of what they might be up to as regards the welfare of Nigeria left a perception of perfidy.

I didn’t do it

First in June, Mrs Alison-Madueke, popularly known by her first name Diezani protested vehemently with a clear conscience that she had never stolen a single kobo of oil money. In another news story yesterday, it was revealed that Okonjo-Iweala or NOI as we know her had handed over to the new president, Muhammadu Buhari a list of corrupt deals approved by Jonathan.

Since NOI held the purse strings, it would uncharitable to suggest a woman who once held one of the highest executive posts in the World Bank could have been co-opted into a corrupt enterprise by the seemingly unassuming erstwhile president, but what do we know.

Who stole the maize?

However, I have a little story, two very hungry boys walked by a maize farm where the corn cobs were ripe for harvest and they hatched a plan to go into the farm and get some for themselves.

The bigger boy piggybacked the smaller boy who also had a bag slung over his shoulder and they walked into the farm shielded by the height of the maize. The big boy did not touch anything whilst the smaller boy did all the plucking and put the maize in the bag and the made away to roast the corn for supper.

The farmer later found the leftovers and did a quick take that the corn might have come from his farm. As he corralled the boys for questioning, they both had a very plausible story and more or less got away with the theft.

The big boy protested that he did not steal the corn, whilst the smaller boy swore that he never set foot on the farm.

Piggyback Exculpation Device

I call this the Piggyback Exculpation Device because whilst the theft was well planned the plausible stories told meant without much interrogation the thieves will be exculpated.

That gave birth to the tweet I posted in June about Diezani and now with NOI also singing like a canary about what machinations for suspect inquiry Jonathan’s cabinet go up to, methinks these women are deftly deploying the Piggyback Exculpation Device of offering plausible stories to be left off for possible bad behaviour.

Diezani uses the piggyback exculpation device. The corncob thief never set foot on the farm because he was carried by one who didn't steal.

— Akin Akíntáyọ̀ (@forakin) June 7, 2015

Now, I hope whoever hears their story is less than satisfied and meticulously picks apart the whole saga to ensure everyone and anyone who has been involved by omission or by commission in the so-called corrupt enterprise that seemingly was the raison d'etre of the Jonathan era is brought to book.

No one should get away scot free, not ever again.

Double life: Denials creating a first time every time

Learned to perfection

Society sometimes helps model people into quite interesting and unique individuals with somewhat common traits. I have observed this in people with fantasies, maybe dreams or daring ambitions.

The secretiveness that governs the quest should be a case for study; it might well have been studied, who knows?

They come across as knowledgeable of what they want having relived the fantasy so many times, it has become experiential as to be performed as rote.

First time every time

Having satisfied that fantasy, the truth then emanates that it is really just the first time and then a torrent of denials follow.

First about whom they are and how their deviation of the public façade they present is an anomaly, then about their fears about being discovered calls for utter discretion.

This is quite duplicitous and probably dishonest too, the secret double-lives puts all interactions at varying levels of risk as the protagonist finds an accommodation that balances quest and guilt with managed daring and pangs of conscience.

The art of denial

Using the device of denial, they deign to wipe the slate clean every time that each real repetition of the fantasy is projected as a novice who just seems to have the deft hand of the expert. Denial has become an art form, practiced with all the necessary safeguards to prevent the Jekyll and Hyde lives in the same person from visiting each other.

At which point you begin to wonder, who you can believe and who has created a world of make-belief, therein lies the erosion in trust of strangers with fantasies.

Thought Picnic: How Much Time Do I Have?

Preparations undone

Almost four years ago, the answer I got was five weeks if it came to the worst that is if the drugs don’t work, else I would have the chance of a good recovery – I did.

However, the question still lingers in the mind and every new result that shows slow but steady progress belies a sense of vulnerability I do well to try and ignore.

Many times, I wonder if I have set things right, I have an idea of where I want to rest but I have not laid out the plans to any detail as to if I will get that wish fulfilled.

Uncertainty needing clarity

It is morbid with all the foreboding that comes with it, but they are thoughts one should entertain just to be sure that what needs to be done gets done and the many other things might well be left unfulfilled - plan, purpose and prioritise seems to be the guiding focus.

In a call this morning, it appears more tests are required, nothing conclusive but enough for me to review, reassess, understand and appreciate that every breath I take, I die a little and at the same time like I have said many times before, if you have life, live it and live it well – until that time when you are no more living, live.

In a few weeks it would be clearer what the situation is, whether there is much to fear to which I mostly respond with a determination not to be overwhelmed and what the prognosis might be in terms of options, choices, decisions and acceptances.

Denial is not a safe haven

Acceptances indeed, I find myself just about to scale the five stages of the Kübler-Ross model again, I have been in denial many times before, never been overcome with the rage of anger, I have bargained but the professionals could not diagnose depression even when all events presented a perfect storm for it, however at the point of acceptance, I was ready to move on with my life – whatever time is left of it.

Knowledge matters and hopefully they will know enough to inform me when I ask the strange and difficult questions – I’ve been there before though I do not know if I have learnt enough to have the strength to face this as I did before – time will tell.

Let’s live

If anything, I keep doing what I know to do, taking each day as it comes, dreaming the dreams of the wonder of man, hoping beyond hope that the uncomfortable will pass and sharing as much as I can dare – maybe it might help others.

There have been pains, I have learnt to live with them, sometimes I ignore their inconvenience for the prospect of getting on – when the truth is manifest, we shall know as we are and wherefore one might dare to peer into an uncertain future – How much time do I have? If we knew, ill or well, we would have lost the very essence of our humanity.

We must live like there is no tomorrow to fulfil what we must today and live like there are tomorrows of endless time that we do not rush to conclusions that require time to understand better.

My week in nut's hell

What a week

The events of the past week have been too difficult to put behind me, as I have ruminated over what I or we could do for my friend to help him, his family in Europe and myself have had thinking caps on trying to identify how to break through the iron curtain of denial and indifference to retrieve by force the man we once knew.

On Monday, I learnt that he had not caught the flight back home from Sunday and he was to have caught on Monday. My concerns were various, most critical being, if the police got involved, I would have been the last to see him; and he having left my home under a cloud would not have made the best reading for any suspicious mind.

Then, I heard he still was in Amsterdam on Monday night but would be catching a flight on Tuesday - thankfully, he arrived home safely on Tuesday, but clammed up to everyone wanted to hear the excuses.

Just as I was about to sigh in relief, I got a letter from my phone company that all international and premium calls would be barred from my phone - this could only be that unusual activity had taken place on a line that they would have had 7 years of records to and they would have noticed a pattern that was completely out of character with my usage.

An incalculable price

I cannot begin to imagine what other price I would have to pay for this whole saga, but this is all now a small thing, compared to the pressing issue of addressing a matter that could slip irretrievably out of our hands.

Meanwhile, I have kept contact with the family because comparing notes between the familial and the friends might help us home in on the core issues.

The bedroom has not seen much activity apart from the fact that I saw another little wad of money which I doubt I put on my shelf, all of which cannot begin to cover the cost of damage to material, goods or friendship.

One email would arrive in my friend's mailbox shortly, not to shoot him down but to awake him to the fact that if he needs help, we are all around to help out; however, this would require some really harsh decisions.

I could not spend the weekend in the house, I am still a bit distressed about it all, so, a long weekend in Antwerp is a breather most welcome.