It's a Guy Thing

Appointment with Death

We get candid about terminal facts

and how I found the keys to life in Nottingham.

The inevitability of death is – thankfully for most of us – a subject that we rarely give much thought to as we go about our daily lives. There are, of course, important exceptions. Those souls with a life-limiting prognosis, those that choose to end their lives prematurely, and perhaps folk in the final season of their twilight years. I am fortunately in none of these camps. Broadly speaking the former have a relatively brief period looking death squarely in the eyes, whilst I would hope the latter reflect on a longevity of life that never promised an endless existence. If you have read my earlier work on the subject of mortality and suicide you will appreciate that I have a measure of understanding of both.

I have – and hope you do too – many reasons for living to a ripe old age. My personal life goals are, amongst others, becoming a grandfather, traveling to many more points on the world map, reading those books I had always promised to, eating those things that I had always shunned, and to once again score a three-dart one hundred and eighty score from the oche as I did as a seventeen-year-old at The Horse and Jockey pub in Banbury, Oxfordshire, when I skipped lessons from the nearby college. I have another ambition which I earnestly hope is tantalizing close – to see Notts County back in the football league. My team. My favorite waste of time. And part of my identity.

Exaggerating this ambition in a crowded bar prior to a friendly against our noisy neighbors from across the river Trent on a balmy Tuesday evening, I confidently claimed that Notts would be back in the big-time of the Premiership, where Nottingham Forest presently ply their trade, in ten years’ time. Pre-season optimism is often equivalent to smoking several high-grade spliffs washed down with a few slugs of Jack Daniels. With Notts, the morning after feeling typically describes our resultant season. As the mirth subsided Miranda – another passionate Notts fan – calmly stated that she would never see the day. My levity was brought crashing down to earth when I later sought to clarify her position. We had all lived with the ups and downs of the club – with the setbacks disproportionately in the ascendancy ─ but surely with the current team, we had reasons to be cheerful? She calmly responded, “I probably only have ten years to live.” With my jaw on the floor, and the match about to kick off, I clumsily concluded our momentary conversation with a sincere request to talk more. She smiled and agreed.

Miranda spoke of her destiny with death as one would expect someone to describe an upcoming work outing or a future trip to the shopping precinct. Her rationality and plain speaking were gobsmacking, yet I knew that her take on her life would be inspirational as I have long suspected that many of us simply never talk about the inescapability of death until it is too late, and by then we often don’t know how to properly discuss it. Could Miranda’s emphatic tale help bridge this gap in human consciousness?

What is your condition and how are you so certain that you will die within a decade?

Miranda’s frankness caught me somewhat off guard. My expectations of how this conversation would proceed evaporated in a few soothing moments as her infectious smile instantly reduced my apprehension. “My condition is early onset familial frontotemporal dementia caused by the mutation of gene C9orf72 that can also cause Motor Neurone Disease and is cutting a cruel swathe through my family.”

Miranda’s elegant yet chilling synopsis of the decade or so ahead challenged the very core beliefs of my views on longevity and human existence, especially as she had only recently celebrated her 49th birthday. “I will most likely be dead in ten years’ time, although my brain will be gone before then. My personality and voice will be no more well in advance of my death. Miranda will cease to exist.” For the first time in my life, I felt like I was intruding into the deepest crevasse of another’s privacy with the weakest of mandates – my own curiosity. I instinctively wanted to back off but at the same time, Miranda’s confidence and natural glow inspired me to ask my next question.

How did you become aware that you were suffering from familial frontotemporal dementia?

“As a family, we have all watched our parents and grandparents go through it. We know the problems it causes.” Although Miranda’s specific condition has no chance of reprieve she nevertheless joined a research initiative – GENFI ─ nine years ago to help the scientific and medical professionals better understand the gene structure and perhaps make a future breakthrough in treatment. “I’m aware that the symptoms are beginning to show now. I am losing my words and have problems with writing. My friends and colleagues have noticed this too but they have been incredibly supportive.” No doubt Miranda had engendered this

supportive spirit as a direct consequence of her willingness to talk openly about her life-limiting circumstances.

Exactly what is it?

“It’s a type of dementia that causes damage to the front of the brain. This part controls speech and behavior. It causes aphasia ─ an inability to comprehend or formulate language – and often it can provoke inappropriate behavior. Miranda spelled this out by simply stating: “One can easily lose filters.”

“My mother lost her ability to speak or smile.” With a candor that was both courageous and captivating, Miranda added, “Death doesn’t frighten me, but I don’t want to turn into a nasty person or lose my empathy.”

What is the treatment and is there any possibility of a cure?

“I am not yet under a neurologist but there is currently no cure. Treatments are palliative and alleviate symptoms. There are, however, exciting things in the pipeline and trials are beginning on gene silencing. This is one of the reasons I felt it was important to take part in the ongoing research.”

Her next sentence was testimony to her love of life and humanity, yet I would defy anyone not to be moved by Miranda’s ultimate wish: “A cure may not come in time for me, but the next generation could benefit from it.”

How do you process the enormity of it all?

“It is totally horrendous. For a while, I thought I was the only one of my generation in the family with the gene. This made me glad, but when others found out that they had it, bizarrely, I felt guilty.”

“Nowadays it just doesn’t monopolize my thinking. I can’t control it so why let it dominate my life? I’m very pragmatic and have only got upset on a couple of occasions. I cannot change my future, so I just keep living in the now.”

You seem so extraordinarily calm about it all – what is your secret?

For the first time in our fleeting time together Miranda looked a little pensive. “It has been playing on my mind more recently as I am showing symptoms on a more regular basis and have made arrangements to see a neurologist.”

You are one of the most rational people I have ever met – what practical steps have you put in place to manage the remaining years?

“I am practical, but I am also a serial procrastinator! As a consequence, I have thought about my future but not actually done anything about it yet. I do, however, have an exit plan in place!”

Culturally many of us struggle with talking about death. From your own experiences how better could we all prepare for the unavoidable?

“Death is unavoidable and so is paying tax – we don’t tend to talk about either! My friends know that I am donating my brain to science and my body can be chucked – I don’t want a funeral!”

“It is important to talk about these things, but most people don’t seem willing to find the time. I have to prepare. Others simply get, ‘Mind that bus!’ ‘What bus?’ splat, and it’s all over.”

Miranda shone a light into the abyss – “Do your family know what you want? My beloved dad has his playlist ready!” I am on the same page, and although I have not yet written a standalone eulogy I am nonetheless leaving a trail of evidence on my take on life throughout my inquisitive journalism.

Do you have a bucket list?

Miranda was short and direct – “Of course, I have a bucket list!”

“Some of it may be achievable. I want to play crazy golf. I want to see the Aurora Borealis. I want a Notts County tattoo on my hip! And I want to go to Italy as often as possible.”

Her delight was enchanting although no sooner had I joined Miranda on this exhilarating expedition than I suddenly felt the need to swallow hard – “I’d like to be in love again too.”

What are your short, medium, and long-term predictions for Notts County?

“This season I’d like to see Notts get out of the National League and start a meteoric rise up the football league and eventually into the Premiership.” Now there’s optimism! Or delusion? Both characteristics of all Notts fans.

A chance meeting in a bar, which led to a conversation about death, was an experience I could so easily have missed as the hubbub of the here and now nearly drowned it out – as often this seemingly overwhelming din of living can. My conversation with Miranda was not, as it happens, about death but about living. An epic reminder that life is fragile, often unfair, and frequently unpredictable.

But there are important constants that I had perhaps thought were merely routine – love, friendship, kindness, and passion. Maybe it’s not everyone’s idea of a stonking time following Notts County or playing crazy golf, having a tattoo, or gazing mesmerized at the Aurora Borealis, but as you advance in years the time available to you to tick off your bucket list, or indeed start one, is ebbing away. I haven’t done one of those particular things and since I have recently conquered my fear of needles maybe it is about time I did!

In the infamous words of author Meghan March:

“Life is short. Eat the cake. Buy the shoes. Fuck the guy.” Thank you Miranda. And one more thing ─ I am pretty red-hot at crazy golf!

© Ian Kirke 2023 / all uncredited photographs @ianjkirke