Thought Picnic: Gathering my thoughts from despair

The darkest night and clouds

To think of the many things, I want to sigh about in consideration of events and issues that have not been as favourable as one would have wanted. The times my mind wanders into tunnels that scream despair and desolation to the hearing that I refuse to heed.

There are words that seek to speak from my lips that restraint would tell should not be spoken, looming hopelessness trying hard to envelop hope and expectation as you walk through the darkest times into the light ahead.

The toll is heavy on health and well-being, you become a recluse of all kinds of expression even as the walls that seem to close upon you are held away from collapsing on your helpless frame by forces within and beyond that grow with the intensity of a volcanic eruption blowing apart the concealment of ineffectuality, I will thrive beyond my wildest dreams even if now all you are clawing at is the will to survive.

Strengthened beyond description

Life is a force that defies explanation and the will to live and live well is more than a burning desire that gives strength to see beyond the present struggles. When all is said and done, you are a warrior that goes down fighting for what we have resolved to do change the soldier’s narrative as victory is won more by making the enemy die for their country much as the heroics of dying for one’s country might eventually be celebrated.

When I feel that I am alone in the battle that I face, what I do not see with my naked eyes is the multitude of angels arrayed in battle on my side, I am growing in confidence that in this experience of what life is, I am on the winning side. Goodness and mercy follow me, all the days of my life. [BibleGateway - 2 Kings 6:17-20 (NIV) Psalm 23:6a (NKJV).

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: For the wind that blows

Amongst uncertainty

The legendary Bob Dylan song asks, “How many roads must a man walk down, Before you call him a man?” I guess that is a question that comes to mind at certain times, even so, uncertain times of difficulty and adversity.

Then I think of the many roads I have walked down for which my manliness has been met with doubt, many that have left me wondering about how each day comes and goes with the battle against helplessness, abandonment, and incapacity, whilst striving to exhibit agency and autonomy.

There is a pressing of issues that demand attention towards which for now there is little resource to meet, yet one is persuaded that the momentary unpleasantness will give way to the better of life and expectation.

In the wind

Hardships that visit to lay markers down in the stories we get to tell, each time we pray we are not exhausted by prevailing circumstances much as we are comforted by the encouragement and support of those who hold us dear.

It belies one’s fragility that the outward appearances of stoicism are just that, there is much strength and there is weakness, good fortune, favour, and blessing are the buoys of hope that carry us along that we do not sink into despair or despondency. Sometimes, you wish for just a miracle and then even the normal course of events are miracles in and of themselves.

The answer is blowing in the wind, I guess to feel that realisation, you need to be out where the wind is blowing and not have your hat blown off.

Inspired by thoughts and things

Disorderly words

Not for a while wrote I an ode,
To wit they ask you call that large?
For the many words to make the code,
Sit back and be entertained in a barge,
For in that we find a lovely abode.

Frequently the letters race about,
Never in the order that you seek to write,
When you do, you’re much in doubt,
Afraid that it won’t read as bright,
Yet all this is not for the clout.

Said him, I’ll show you what large is,
Obviously, it must be about what it means,
Not really with regards to all of this,
In the script that gives more than it leans,
Towards the world that’s sealed with a kiss.

Caught in the process that fails to serve

In the waters of fate

I live a very grateful man, many times afflicted by the issues of life, some by commission, others by omission, and a few by sheer incompetence. Much as I hate to view myself as a victim, there is nothing as fundamentally stripping you of dignity as to be lost in the system or some convoluted process.

The apparently structured processes, dry run to the nth degree that catastrophically fails when met with reality and completely missing facility for recalibration out of example and lessons learnt to be corrected.

It is like falling into water and drowning whilst lifeguards quibble about whether to throw in a lifebuoy, a lifeline, or jump in to save me. Maybe, just maybe, they see me flailing in the water between gulps, crying out orders to them on what to do, and then it occurs to them, there is a life that needs saving.

In the effects of indecision

Yet, one cannot sit in a pity party, you press on. Heck! This is someone who has survived life-threatening circumstances and had moments or stretches of one misfortune, infirmity, incapacity or another, I need to get a grip.

It is just that many times when processes are put in place, the critical success factor which pertains to the fact that someone is affected by that process is missing. You do wonder if ever the question gets asked in the design process, is there a person affected by this process and if impacted negatively, what mitigating steps are in place to promptly ameliorate and remedy the situation without adverse consequences?

In the hope of survival

In view of that, a lifeguard has thrown in a lifebuoy but from the perspective of the drowning, it is an act of disinterest and indifference, boxes are being ticked and that is what counts in process evaluation, whether lives were saved, are not of statistical significance, only that the saved should feel undying gratitude for being noticed at all.

In all the slow progress made, patience is a virtue that I am daily equipping myself to practice and endure, I have to trust another process that is unscripted, I will not only survive but also thrive.

Thought Picnic: In the rivers of black identity

The river as it flows

I was invited to listen to Leon Bridges River; which also appears in HBO’s Big Little Lies original TV soundtrack, with the thought that the song was a significantly meaningful reflection for the black race, but there was a pause as that statement was made with the feeling that across the pond and history, things might not necessarily have the same import that they thought it should.

Attentively, I listened and tried to grasp the essence of it, I felt obligated to see things from their perspective as the lyrics though unseen but heard clearly did speak but did not catch on. In all honesty, it was best not to feign pretence as we were exploring the deeper issues of black identity. It hadn’t heard of Leon Bridges before.

River does evoke much about history and redemption, but in the words of the refrain, “Take me to your river, I wanna go”, the river was a place of routine, where you bathed, fetched water, washed clothes, and had fun, it did not carry any form of sacredness associated with cleansing and baptism as my interlocutor surmised. [Genius Lyrics: Leon Bridges River]

The river somewhere different

I felt that as there was no restriction to go to the river that flowed by the village, its great value might have been lost in its apparent familiarity. At my first hearing, meaningful as the song might well be, it would take more listening to it to have the deeper understanding being asked for at that time.

Later, I thought about where the river could mean just as much to me, it involved a different qualification in The Holy River by Prince, from the Emancipation album; there he sang, “Let’s go down to the holy river, If we drown we would be delivered,” that alone in its introduction was taking me to a special and sacred place of discovery and miracles. I was taken from the time I originally heard the song. [Lyrics from The Holy River]

Blog - Thought Picnic: Find your holy river in which to drown

This river was not a place of fun but a grotto of sorts, it was filled with a different kind of symbolism and mysticism, a place your approached with some dread and yet the anticipation that if everything seemed to go wrong, it would come out right regardless.

The subconscious of eternal existence

I found myself thinking of enclosures and openings, why I am totally averse to wearing anything like ankle chains, and then finger rings or neck chains. I wear a bangle of betrothal, but it is open-ended. I could give a reason, but I felt a profundity in the fact that the time we spend on earth is but a subset of the eternity of our existence.

We are in genetic and ethereal terms the result of an ancestry that doubles up each further generator of our origin that goes back from two parents to four grandparents, to eight great-grandparents, to sixteen great-great-grandparents and so on. If we do procreation, we begin a new chain that is a subset of our progeny.

It had me wondering where a tendency to fussiness or aversion comes from without influence or education, quirks and traits that attend to similarities with people we have never encountered but are strong in our personalities that some might even be inclined to the belief in reincarnation. I do not assume to suggest that I am competent in any form of existential philosophy, I would consider myself a total novice.

However, what I came away with was once again how so diverse and divergent the cultural and historical identities of the black race are, where the search for one's roots is a journey of discovery and the acceptance of self with being comfortable in one’s skin is a process of continuous learning involving complementation and jettison in various measures that we evolve and restate who we are depending on where we are.

I guess there is more to meditate on.