Wednesday 2 August 2017

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

Remembering Fela
When I heard that Fela Anikulapo Kuti had died on the 2nd of August 1997, 20 years ago, I was very sad and I mourned him. He was the outlier, labelled the outcast who outed the potentates and powerful in their abuse of power and privilege.
His shrine was hardly a mile from Yaba College of Technology where I was a student from 1982 to 1985. There was an elite fraternity that invited him to perform on the grounds of the school and we the poor students had to find sneaky ways to view his performance from outside the barricades.
I suppose others will write about Fela’s life, his politics, his beliefs and ideology along with his activism, I would write here about a shared affliction.
Lesions and pain
On the day after Fela died, his brother, Professor Olikoye Ransome-Kuti announced that he had died from complications due to AIDS, further commentary suggests he had Kaposi's Sarcoma which is a form of cancer and the other parts of that commentary that indicated how he suffered might well prove that is what killed him.
On the 22nd of September 2009, a little over 12 years later, I was admitted to hospital after a desperate visit to my doctor a few days before, when she saw the lesions on the soles of my feet and decided they looked serious, very serious indeed that she had to refer me twice.
What became lesions, started some months earlier as common Athlete’s foot until my self-medication attempts did not see it off before it began to seep pus and then became unbearably painful. Much as I was already aware that I was HIV positive, I was not on medication and to everyone around me but myself, my health was deteriorating and failing without me paying much heed.
Full-blown AIDS
When I did make it to hospital, and the first checks indicated the lesions were not related to diabetes, I was put on strong antibiotics which from my research suggested they were to attack fungating tumours, that was the first confirmation that I had fearfully thought was the case some weeks before, I had a cancer, but I did not know its name.
I will not be surprised if Fela also found himself in the same situation, in excruciating pain, the tell-tale lesions hidden from view, for usually, Kaposi’s Sarcoma can show on the face, in the mouth, or anywhere on the body, mine was on the soles of my feet, and so, it only made them quite painful to walk on.
After a few days, the antibiotics failed, I was running a temperature and some deep biopsies were ordered, 9 injections of lidocaine after, the pain was just as demanding of attention and reaction, I folded a piece of tissue paper into a thick mouth guard and bit on it as the doctor poked into the heart of the lesions.
The results came back a week later, I had Kaposi’s Sarcoma as a result of having succumbed to full-blown AIDS, I was dying.
Endure or die
My consultant came to chat to me and said, “We can treat this, it depends on how your body takes the treatment, if it takes, you’ll be fine, else you probably have five weeks to live.”
In a strange land, amongst people of a different tongue apart from friends and neighbours who became my support network, I had no closer relation to turn to as the gravity of my situation sank in. I was by then on antiretrovirals (ARVs) for almost a week when 5 days later I was put on a regimen of cytotoxic chemotherapy.
I was on chemotherapy for 5 months every three weeks, though, by December, all the lesions had gone, my HIV viral load was down to undetectable but the pain of cancer lingered for another two months after that.
Healthcare options and choices
I sometimes wonder if Fela ever had access to anything like the care I had, though a late diagnosis presenting AIDS, there was a lot that could be done for me once they determined what the cause was, what the lesions were and what treatment was effective against it. The cost of my treatment was also borne by insurance for there was no way I would have been able to afford the cost.
If I transposed this situation to the UK, my feeling is my doctor would have seen the lesions and adopted a wait and see attitude rather than act with urgency. I am not sure of what the options would have been in Nigeria.
Making known to the public that Fela had AIDS before he died might have sown panic in the populace apart from the stigma that comes with being HIV positive that still exists today.
Get checked, get treated
The antiretrovirals of 1997 might not have given much respite to Fela as he succumbed to AIDS, however, if anything can be learnt from Fela’s and my situation, it is the need for regular check-ups and on diagnosis, prompt intervention for treatment before things go seriously downhill from there.
Now, antiretrovirals are quite effective and are mostly free, they give people with HIV life expectancies similar to the uninfected, the advent of Pre-Exposure Prophylaxis PrEP now reduces to a minimum the transmission of HIV for those without the virus, and studies now indicate that if your viral load is undetectable then the virus is un-transmissible. [Undetectable = Untransmittable]
In conclusion, as I remember Fela today from the perspective of our shared history, I ask that you get regular check-ups, get informed, get treatment and get on with your life. I got a second chance and I am here to share my story 8 years after AIDS and cancer.
Explainer between HIV and AIDS
AIDS is caused by HIV and it is a catch-all term for opportunistic infections that take hold when the immune system is completely compromised. A regime of antiretrovirals would give the body a fighting chance because HIV gets suppressed, the viral load goes down, the cells that can fight infection and disease gain ascendancy along with the drugs administered and you go from having full-blown AIDS to having HIV with an undetectable viral load and a chance to live again.

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