“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 20th of
September 2002 became a date to remember.
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 22nd of
September 2009 and began antiretroviral (ARV) treatment on the 30th
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 5th of October 2009 and 6 subsequent courses to the 8th
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)
The
looming abyss of a deep biopsy
A
relocation from the cacophony
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