The Hardest Decision of my Life: Choosing a Stem-Cell Transplant

Achieving the dream

It’s quite strange, but two years ago, I would’ve been proud to tell you I don’t have one single regret in life. And I would’ve believed it.

I spent the best part of ten years - my late teens and most of my twenties - pursuing a career in the arts, specifically in a gallery.

I wanted to make art, but I didn’t want to be a struggling artist. I thought the best of both worlds came in the form of working in a gallery, and being content with making my art for myself. Without any of the pressure that comes from relying on it for income. And, of course, this too would be hard. Getting a job in a gallery is notoriously difficult. Even for people who are just attempting it for the first time, they know there is a huge mountain to climb. But I had something most people didn’t.

What will decide whether you can work in the art world generally boils down to three things. Proximity, network, and time.

I live in London, the second largest art market in the world. So that’s proximity down. Again, by virtue of living in London, and having a very accommodating mother, I had time. I could work for a year doing unpaid internships, without having to worry about money. I could work in a minimum-wage job for another year after I graduated, looking for a job. And my network? Well I would like to think of myself as reasonably personable, so didn’t think that would be too hard. All of this amounts to a privileged position, by which, if I played my cards just right, I could get in. And once you’re in - you’re in.

So I knew all I had to be was determined. To ride the lows of rejection, and improve. Because every improvement would lead me closer to an acceptance at a dream job working in a gallery. It was inevitable. And the knowing of inevitability can truly be a superpower.

After a year of a foundation art and design course, a four year undergraduate degree at Loughborough University including a year of unpaid internships, and another year of looking for a job as I worked in a pub; in 2023, I finally landed a job in a gallery. But not just any gallery. This was Stephen Friedman Gallery! A contemporary gallery at the heart of the art scene that represented pioneering artists - at a time when they were moving to Cork Street, in Mayfair, no less. Truly, this was the centre of the art world in Britain.

I’d done it.

I was in. And once you’re in - you’re in.

I couldn’t have been more overjoyed, nor my friends and family more proud. I was working in operations, and with marketing, and technicians, to help bring exciting exhibitions not just to London, but art fairs all over the world. I met Yinka Shonibare, and Leilah Babirye. I had the pleasure of a private talk by Jeffrey Gibson on his work before he exhibited as the first Native-American artists to present at the Venice Biennale. I had a ball of a time nocking a few drinks back with Caroline Coons at an exhibition preview. I had an exhibitor’s pass to Frieze London, and absorbed the vibrant energy that buzzed in the setting up of the pavilions - the thrill of viewing the curation of dozens of pavilions shaped and reshaped by the anxieties of the many cooks in the kitchen, and then finally being set in stone. Silent and dazzling. Waiting to be revealed to the public.

I was living the dream I’d worked so hard for, and was getting paid too!

But it didn’t last for long.

Living With Sickle-Cell Anaemia

I’d had Sickle Cell Anaemia my entire life. Even in the womb, my mother knew I had the condition, and she was offered to terminate the pregnancy because of it. Her sister, my Aunt Mary suffered terribly from it, and so I could only imagine the torment that would come from choosing either. For the sake of my having a difficult life over none at all, she chose to keep me. But that scythe of sickle cell anaemia must have hung low over her, because just before I was born, my Aunt Mary passed away from the disease.

It had been a difficult road for me in childhood. Getting the right medicines and dosage is all very trial and error, and I seemed quite difficult to calibrate for. When I was young, perhaps four, I was admitted to the ICU for a particularly bad crises, and I was in a particularly perilous condition where my chest was effected most of all. Luckily I don’t remember much of it, and when I think about it, I don’t remember all that much of my childhood.

Sickle-Cell pain is difficult for an adult, and for a child it can be traumatising. And so they say, the mind protects itself by blocking a lot of it out. The morphine helps. Because it’s not just the crises you have to deal with, but the recovery. Muscles waste away, joints stiffen, and your body becomes accustomed to opioids. Overcoming all of that multiple times in childhood, is its own sort of trauma that I’ve done well to forget.

But after this particular recovery, the new medicines I began to take worked wonders. I was back at school, and for anyone who didn’t peer beneath the surface, I was a normal boy. Which is all I ever wanted.

It was in this period, in secondary school, that my doctors first asked me if I wanted to have a Stem Cell transplant.

I was one of the lucky ones. I have two older brothers, and they were both tested early in my life to see whether they would be a match.

One of them was.

But I’d just started to live a normal life. The medicines were working. And the process sounded so arduous. Drilling into the bone, months and months in hospital - for me and my donor brother. Not that he would have said no, but the thought of putting him through that really soured me to the prospect. But most of all, I had cultivated a uniform sensibility that my all-boys catholic school encouraged, that I enjoyed and enhanced for fear of my friends discovering things other than my illness, and that I didn’t want shattered. For the first time in a long time, I enjoyed school - I was enjoying my childhood.

So I said no.

And so I lived a very normal life; or rather, as normal a life I could.

As I got older, I transitioned to blood-exchanges which worked even better than the medicines I took. Every six weeks I would go to the hospital, have around eight pints of blood drawn from my left arm, and a fresh eight pints infused through my right arm. The whole process was shorter than the time it took to twist my hair - when I had hair to twist.

The pains were, for the most part, gone. And if ever I had any, small doses of paracetamol would see me through until the next blood-exchange. This was the miracle that felt more like a cure than a treatment. I had the feeling of being impervious to Sickle-Cell. It was both a part of me, but such a small part that I could pretend it never existed. Blood-exchanges were just a part of my self-care. No more arduous than moisturising in the morning, or indeed, having my hair done. And afterwards, I felt such a rush of energy that I had never before. Truly, I thought, this is what everyone else always feels like.

It’s amazing what we can deceive ourselves into believing in order to live the lives we want - even when that deception is in conflict with our very bodies. I indulged in maladaptive behaviour. For most of my childhood I would wilfully be ignorant to my condition. If I didn’t think about it, it couldn’t hurt me. And now I decided that I was cured. But it was just a pretence, perhaps a useful pretence, that my body would soon remind me of.

A change of circumstances

Graduation was round the corner in 2022, but instead of being out celebrating with my friends, the pretence was violently broken:

I had a brain haemorrhage.
It really was a strange experience, but one that felt terribly familiar:

The shooting pains, the blurred vision, the immobilisation. But it hadn’t built up at any gradual pace, as usual Sickle-Cell crises do, the whole of the assault came at once, out of the blue.

It felt like a knife had stabbed the base of my head.

I was thrown from my chair, cradling my head.

I thought that surely a pain this terrible could not possibly get any worse, that it would abate after ten minutes. But the pain shot down my spine like that knife had opened my back, then doubled back upwards to tear chunks out of my head.

I was convinced my head was going to explode.

I’ve never called an ambulance before, it had always felt like the last of the last resorts to me. Like calling a friend on a quiz show, but if ever there was a time to redeem that “ONE AMBULANCE CALL OUT” voucher, it was now.

I reasoned with the universe that because it was my first time calling one, that it should come quickly. I told the operator about my illness, and because that was my only source of reference I told them I think I’m having a crisis, but that I’d never had one this terrible. My heart sank when they told me it would take two hours to come.

The codeine I had on-hand didn’t touch the sides.

After I threw up twice, I managed to crawl my way to my bed, where my body became accustomed enough to the pain that the convulsions began to subside, and my two dearest friends, Laura and Priya, took care of me. That thin veneer of health and normalcy that I had attempted to preserve for my four university years, shattered in the most awful way for me, which almost felt as painful as the agony even the codeine couldn’t stop. They were both outside the house before it began, had seen me as sprightly and jolly as always, but within half an hour, I was entirely debilitated. More than anything, it affronted my idea of masculinity at the time, which my queerness had compounded in my younger years. I imagined that I cut the figure of a frail octogenarian who’d had a terrible fall by the time the medics finally came and carried me out, shaking and tearful, both in agony and a sublime ecstasy that only intravenous morphine can induce.

I was lain onto a trolly, and lifted into the ambulance where I waved goodbye to my friends, as the medics shut the door on my misery.

An offer I couldn’t refuse

Bad news: It was indeed, a brain haemorrhage. A burst vessel on the brain.

Good news: it was a small brain haemorrhage, and after some weeks admitted to hospital, it would mend itself. What’s more, I had no motor complications, my body worked just as well as it had before; despite being a Loughborough student, I was never an athlete, but I would’ve missed playing the piano had I lost the sensation in my hands.

The CT and MRI and all the other scans didn’t conclude what caused the clot, and so the specialists were very much hesitant to blame my Sickle-Cell, but the consensus was that it couldn’t have helped. But if it was worse than it was, or if I had one in the future - god forbid - the Sickle-Cell Anaemia would make it worse.

It was in this context that in 2023, my doctors came to me with an offer I couldn’t refuse.

There was this new kind of stem-cell transplant, one that scientific advancement had made profoundly easier than the one proposed to me in my teenage years. There would be no drilling into the bone-marrow, not for me or my brother, the donor. He wouldn’t even need to stay overnight. Rather, I would undergo a series of therapies to root out my bone-marrow, and the donor’s stem cells - harvested only from his blood - would be infused into me through my veins. Just like a regular blood transfusion. The stem-cells, I was told, would simply find their way to my bone marrow. I’ll tell you what my doctor told me:

Don’t ask me how it works. It just does.

I knew there was no way I could pass this up, and yet I was full of anxiety. Because my dream job, which I had spent my entire adult life coveting, was in my grasp. All the persistence had payed off, my blood exchanges were working - I had no other complications since, and very little Sickle-Cell pain. I was ready to leave home, and make my way out into the world. Going into the hospital to undergo a Stem-Cell transplant wouldn’t just take me out-of-action for a few months, but a whole year. And because I had just started at Stephen Friedman Gallery, I had no rights to sick leave, so would have to leave the job.

But it was worse than that. Because there was a likelihood, and not an insignificant likelihood, that it wouldn’t work at all. That I could go through the transplant, having lost my dream job, and be left with nothing whatsoever to show for it.

I felt like I was losing everything, and as though I wouldn’t be gaining much at all in exchange.

Or, better put, all the losses to me would be profoundly material, and the gains theoretical.

Humans are generally bad at planning for a hypothetical future when the immediate circumstances are so satisfying. But I had planned. I had worked. I was living my hypothetical future, I was reaping the rewards of my compounding efforts.

It seemed to me, this new future I was being asked to accept would come at the expense of everything that I had worked so hard for.

And yet…

I chose the transplant.

Not knowing what would survive it — my body, my ambition, or the version of me I had spent ten years becoming.