Thought Picnic: Addressing irresponsible Facebook communication

Good manners still matter

I have at times had the misfortune of learning of the death of someone known to me on social media, however, I have hoped that the closest relations of the deceased did not suffer the indifference and insensitivity of being informed through the same medium.

It is just good manners to inform the bereaved on a more personal basis rather than have them collide with a wall of grief from a public and impersonal medium. Besides, I take cognisance of my cultural affinities that suggests news of deaths must never be conveyed with bluntness to the closest relations of the deceased either in informing them or in enquiring from them.

Wisdom and sensitivity applied

I remember a conversation I had with a close uncle over a decade ago, he did not know if I was aware that a cousin of mine had passed on, he did not blurt it out, rather he made a passing reference to my cousin that would have elicited a response or a question from me. The response would have indicated I knew, the question would have suggested I was oblivious to the death and then he would with wisdom settle me down before telling me.

I am writing this blog because after the episode yesterday, it is necessary to revisit the matter because I am quite incensed and annoyed. Another uncle of mine should have known better to be smart and wise about enquiring of me from my sister without putting them in unnecessary and preventable distress.

Blog - Please, confirm is it true that Akin Akintayo is no more ...?

Utterly inexcusable conduct

I appreciate social media provides such ease of communication, the ease is no license to dispense with discretion, manners, decorum, sensitivity and empathy, all of which in my view was lacking from the question asked yesterday that it is contemptible and should be excoriated in the sternest terms.

Nothing makes the act of that distant relation uncle forgivable in the slightest, it was utterly irresponsible and reprehensible conduct. I have elderly parents, I would not want to predecease them, even as I am aware of my vulnerabilities and mortality.

The excuse is not social media or Facebook, it is just plain uncouth behaviour and bad manners channelled through a medium of expression.

The ease that social media grants for communication is neither license nor permission to be indiscreet, inconsiderate or uncultured.

— Akin Akíntáyọ̀ (@forakin) April 17, 2018

Please, confirm is it true that Akin Akintayo is no more ...?

Blogs of fearsome death

I am in mixed emotions about this blog because it reads almost like a blog I read exactly a week ago. He had written that if that particular blog appeared, it meant he had lost his battle to cancer, the blog he wrote a few hours before that, he told us that it was possibly the last blog he would write alive.

So, imagine the feeling I had when a few minutes ago, I received a message from my sister on Facebook to call her immediately I got the message.

Losing my cool

She had been contacted and the message which in my view was in context an incomplete sentence read, “Pls, confirm is it true that akin akintayo is no more”.

I could take issue with many things wrong with that apparent inquiry, incomplete words, the gross levity and disrespect to my person in not capitalising my names; I guess I have suffered more indignities than this in life but accord me some respect in death if I am already dead. If that was a question, I am waiting for the interrogation mark.

I am still alive and well

However, let me assure you all that I am writing this as a living person, breathing, hale and hearty, all my functions intact and hoping that I have some retention of my sense of humour to laugh at this apparent attempt at my obituary long before it is necessary.

I can offer a few suggestions for this line of enquiry.

• Please, confirm is it true that Akin Akintayo is no more under 50?
• Please, confirm is it true that Akin Akintayo is no more angry at this message?
• Please, confirm is it true that Akin Akintayo is no more distressed than my sister who was more upset than I could imagine for hours, unsure of what to believe that she received as a Facebook message?

I had everyone calling and messaging me to confirm whether I was no more communicating by whatever means possible as the enquirer himself is someone I have probably not seen or spoken to in nigh on 28 years.

Again, I am here, I am well, and I hope to God I get to write another interesting blog. Don't believe the rumours and lies, the man is still being the contrarian he is, and for another day, not suffering fools gladly, no, not once.

Please, confirm is it true that Akin Akintayo is no more writing another sentence on this blog? Yes!

Thought Picnic: The private grief we've had

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The private grief we've had,
As close friends passed away,
Our silent mourning souls,
Couldn't share what made us sad,
In closets, we all wept,
As kith and kin ignored,
The truth of who we were,
The secrets of our lives,
The burdens we still bore,
Of friends that mattered more.

The secrets of our grief

I wrote the poem above in a tweet just a week ago when a friend who I had just learnt had terminal cancer passed away. The realisation that I was sorrowful and yet without those with whom to share that feeling of loss just dawned on me.

It was not the first time that I have shared the demise of a friend and within the compartmentalisation of my affairs, there are relationships that are as public as they can be and others that are private, discreet, secret and not open to scrutiny.

For those who knew every aspect of my life, to whom I have had the freedom to share my thoughts, feelings and secrets, much can be said about grief, not only of the loss but the fondness and memories that made the person significant, to others whose knowledge of my more private truths are not that obvious, you’re left second-guessing how they would react to being let into the privy of a life.

The love I lost

When I lost my lover just a few days after being discharged from the hospital, I was dealing with a major crisis in my health and other issues that got compounded with the death of a partner. The continuous badgering to get married which could easily have been met with the great disapproval of my choices in life meant announcing my grief and the depth of it would not be understood.

There are many I have met in my social circle, which is varied, diverse, alternative and different that have been of some great significance in my life, friends, lovers, acquaintances, buddies of all kinds that would put the faces of polite society to full blush, we all have our kind of company and those who various kinds of fulfilment to the joy of living and the pursuit of happiness.

For them, there was always a tear, a sense of loss, the heartbroken feeling of the end, with all that is left is memories, thoughts, reminiscences and dreams. They occupy a portion of life that cannot be denied or taken away, whether or not they are acknowledged by others.

We all have our normal

Maybe, it would have been easier to lose someone that fits some norm, the fact is we all lose many that do not fit any easy norm without the need for extraneous explanation that would leave the listener more confused and open you to the negatives of disavowal, disapproval, disdain, disgust and consequent distress or disgrace, all of which is unnecessary in the scheme of things.

You can be a man and lose your boyfriend or husband, be a woman and lose your girlfriend or wife, none of which is insignificant to the heteronormative. We would not be denied the feelings we have for the living and grief we have when they are departed, even if we are denied the opportunity to pay our last respects to them.

We are always the truth of who we are, even in the secrets of our exciting and sometimes turbulent lives, for we bear the burdens of those dear and loving friends over the times we had the pleasure and privilege of knowing them, to the truth that they did matter more than anyone else would ever know.

ACT UP brought the focus back to the urgency for human lives

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Setting the scene

I was all emotional when I left the cinema on Monday having gone to watch a film titled 120 BPM (Beats per Minute) [French with English subtitles] that was brought to my notice by my friend.

It was a historical perspective of ACT UP Paris in the early 1990s created along the lines of the direct-action advocacy group ACT UP in the United States.

To the many of us who live with HIV or have had the amazing turn-around from full-blown AIDS, we owe the greatest depth of gratitude to the people who initiated the ideas behind starting the AIDS Coalition to Unleash Power (ACT UP) and how they carried through their advocacy until governments and Big-Pharma were responsive to the plight of all afflicted by the scourge.

At the expense of the dying

From the early discovery of that disease that began to cut a swathe through first the homosexual community, then drug users and unto haemophiliacs, the governments of Ronald Reagan, Margaret Thatcher and Francois Mitterand simply ignored the fact that people were suffering and dying from this new disease.

We saw pictures of emaciated bodies, scientists were involved in a race to understand the disease and especially in the United States mostly for personal glory and national one-upmanship rather than for those who stood to benefit the most from their research efforts. The people who were dying cut down in their prime out of institutional indifference and corporate inertia, there appeared to be no urgency towards the emergency.

I could not have felt a better sense of justice when The Nobel Prize in Physiology or Medicine 2008 honoured the French side of the research efforts and spurned the American side of the battle. Some of the people were playing with lives that were precariously at the precipice of total annihilation through AIDS.

Dragging their feet as people died

It was in the light of this discovery and understanding of the virus that pharmaceutical companies began to work on new drugs but were holding back research results and preventing the early adoption of experimental drugs that could possibly immediately health outcomes for people who already had HIV.

This is where ACT UP’s advocacy forced the question, pushed the debate and ultimately compelled governments and institutions to not only recognise the health emergency but get engaged in eradicating AIDS.

A primer on direct action advocacy

The film centred around the debating forum of ACT UP Paris with their Chatham House type of rules of engagement, the strategies for making the headlines, the resistance they faced from the authorities and pharmaceutical companies before they could no more be ignored and the real issue itself, for all the protests and advocacy, it was essentially about real human-beings, their private fears, their public rage, the loves of their lives and the loss of many who succumbed to AIDS.

More poignantly, ACT UP in its concept and activity was a model of activism that had people normally marginalised, usually persecuted, and generally ostracised decide they had had enough of being isolated and ignored by society, maybe even criminalised by the establishment to identify with a cause for which they had nothing to lose because many in their community including themselves were dying.

It was a movement of existential urgency and by that, it brought attention, engagement and radical change to the way HIV and AIDS was tackled and managed. There is no doubt that advocacy groups like ACT UP are needed today to fight for rights and freedoms that the comfortable and unafflicted enjoy. It is to those who found the courage to upset the status quo that I dedicate this, for without you, we would not be here.

If it is the only film you watch this season, it would have been worthwhile. 120 BPM (Beats per Minute) [98% on Rotten Tomatoes]

Cancer: You can’t keep winning this game at life.

Strumming the pain

It is heart-breaking and humbling to watch and he is strumming the ebbing signs of life in the departure lounge from a body wrecked even with a mind so lively and writing full of poetic movement.

I discovered on my Twitter timeline only a few days ago that a friend who had never met but was much an acquaintance was dying from terminal cancer. As I went through his timeline, he had cancelled a wish list, married his partner, signed over his house, began to receive visitors who had ignored him for years but were now seeking to see him for the last time.

The cancer commons

Cancer creates some sort of kindred spirit, in my case, I have been fortunate, I survived, but I never cease to feel as vulnerable when I learn of anyone being visited by this rotten scourge.

I immediately wrote a direct message to him expressing my deepest sympathies of learning of his situation. He had written in detail about all his feelings physical, mental and emotional, all of which I would well relate to. However, I have learnt that just because I have once had cancer does not mean I can say I know what you’re going through.

At best, I understand, maybe I can quite relate, but beyond that, each cancer experience is unique and different, from the diagnosis through the prognosis and the options you have to tackle the disease. In my case, I was given some hope, responding to treatment meant I would survive that episode else, I had just five weeks to live. In his case, it was an aggressive leukaemia or which all options had been exhausted.

He responded so graciously to my message wishing me a long healthy and happy life.

The slow goodbyes

I am the going through lots of emotions, a man so young watching his life ebb away because there is nothing he or medicine could do about it. Miracles we were taught to believe in seem to be in such short supply, they have become the substance of fable or fairy tales even if we are literally commanded to have faith.

Online, I am almost encamped in a vigil on his timeline at the sadness of this because this was one who brought love, joy, happiness and laughter to others in his prime and his strength.

His condition is at a point where what can be done is palliative, h has moved into hospice care and though he went in with his dog, he has sent his dog home with his husband because the dog can sense that things are not so good with his master and is taking on that strain too.

Reading through his blogs, I have not seen resignation or regret, but an acceptance of the inevitable and a desire to breathe his last in the arms of his beloved husband. Cancer, you can’t keep winning this game at life.