A Creative Nonfiction essay I started to write after being shortlisted for bone marrow donation. This piece is a personal essay, but one that also draws on the techniques used in experimental journalism especially New Journalism. This piece was intended to be part of a serialised account detailing the whole process, highlighting the importance of donation whilst also exploring my own anxieties. The project was abandoned after I didn’t make it to the final (someone else was a better match) but thought I would share the initial idea.
19 September 2019
The sun unapologetically glares through the curtains. It’s mid-morning and I’ve already got a small collection of e-mails I need to catch up on. A dreaded task that requires dark brown coffee. I am behind before I have started. One email stands out from the crowded inbox:
Subject: DKMS UK Health Questionnaire
Potential Stem Cell Donation
Excited at the prospect of being a donor, I can feel my heart beat faster; trepidation rising within me. I happily signed up to be a donor as part of Paddy’s Plea, a campaign to find a donor for a local boy who needed to find a match. I have proudly donated blood for several years and I believe in donating all of my organs – but once I’ve finished with them. Bone marrow donation worries me a little, but I signed up knowing that I’d never be picked. After all, 70% of patients don’t match with their own family members let alone a stranger, so the chances of my human leukocyte antigen (HLA) matching anyone else’s was minimal right? Apparently not.
The science behind it or how it is done did not worry me – it was everyone’s reaction when I told them.
My office mate, who had been tested at the same time as me, told me outright: ‘I’m so glad it was you who was a match and not me.’
‘Bone marrow?! That’ll be agonising’, said another colleague.
‘I wouldn’t donate mine. Too painful.’
An older colleague visibly grimaces: ‘You’re braver than me.’
Let’s get one thing straight early on: I am not brave. Not in the slightest. The bravest thing I’ve ever done is unplug my phone charger without turning it off at the wall. And although I know the procedure is painful, it is the fear of pain that is often much worse than the pain itself. And I fear a lot of pain. When I donate blood I have to watch the nurse put the needle in so I know exactly when the jab is coming. If I cannot see it, I feel myself going hysterical at the prospect that this time the pain will be excruciating.
Reading the e-mail, the consent forms, the health questionnaire, my anxiety skipped a few gears. I have a few fears in life, all of which feel particularly related to the anticipation I am feeling even though some of them are at odds with each other.
Death. I fear death all the time. I’m constantly thinking about death from the moment I wake up to the moment I fall asleep, fearing that I might not wake up. My happiest dreams are Kafka’s nightmares. I fear when it will come, how it will get me and at whose hands. I don’t fear it enough to live a healthy life though. I could probably cut down 90% of my weekly alcohol intake and still comfortably be defined as a binge drinker. I’ll happily eat pizza or biscuits for breakfast (you’d eat both – don’t lie to yourself, Kristopher). But the fear does stop me from living life, from strenuous activities like walking through a forest that is full of nature’s death traps or exercising beyond a jaunty jog down the stairs for more coffee and biscuits (I have this fear that it has been so long since I’ve exercised that if I start now it will just shock my heart so it’s best to stay the course).
Pain. I’m a historian. Arguably it is not a high-risk occupation. Sometimes I get a nasty paper cut which I forget about until I eat some salt and vinegar flavoured crisps. I might forget a page number in a footnote, or someone might write a particularly mean comment about my work. Those moments injure me emotionally but luckily that’s the most pain that I have suffered. I’ve never broken any bones, nor even sprained my wrist (although my eyes are strained occasionally from reading my handwriting). This complete lack of pain means that I fear pain more than most people. I’ve not experienced anything beyond a 2 or 3 on the pain scale so I imagine that anything above 5 is unbearable. Everyone who told me that bone marrow donation is ‘incredibly painful’ was not helping. I absolutely feared Major Pain.
Flying. ‘How is this related?’ you might ask. They say that fear of flying is related to the fear of losing control and in my case, they are absolutely right. I hate flying precisely because I am not the one in control. I don’t really like being a passenger in any vehicle because someone else is in control. Some people don’t like the moniker “control freak”: I embrace it. But I know I will not be in control of this situation once Major Pain’s rival comes into the scene: General Anaesthesia. Only about one in a hundred thousand will die from general anaesthesia related complications but I don’t like sleeping at night just in case I don’t wake in the morning so the odds still feel a little high to me.
Luckily, I have one fear greater than all of the above: Failure. A crippling fear of failure. I don’t like submitting work to publishers in case it gets rejected and is left unpublished, so I leave them unpublished on my desktop. It’s the same outcome, but no one says any mean things about it and no one is disappointed. All the fear is growing in me, but if I pull out now I will be a failure, which is worse than anything else, so I have to try to go through with the donation no matter how scary it feels. And believe me, it feels very much so.
That afternoon at work, I sip coffee at my desk whilst painfully flicking through needless admin when DKMS phone to probe me for further information. Most of the questions I can answer relatively quickly and easily.
‘When was the last operation you had?’
‘Tonsillectomy, I think, about 15 years ago’. (This has no bearing on my status, but there’s a small part of me that hopes you might need tonsils to donate marrow.)
‘Are you on any medications?’
‘Antihistamines’ (Again, I doubt my mild allergy to pollen is going to be a risk, but just in case.)
Then they ask me a question that I struggle to answer. A real doozy of a question:
‘Great. Can I just confirm your height and weight?’
‘I’m 5 ft 9 and…. umm… actually I don’t know.’
‘You don’t know how much you weigh in kilograms or stone?’
‘Neither, sorry. I don’t really think about it.’
I don’t. I’m overweight but I don’t really think about how much I’m overweight. To me it is a fairly binary thing: I’m fatter than average and let’s leave just it there. But now, unlike the other questions, I’m not hoping my weight is a barrier to donation: I’m furious that it might be! I’d be mortified if I’m ‘too fat to donate’.
You can bravely tell people, ‘I was going to donate bone marrow in a very tough procedure but unfortunately my heart condition prohibited me’, or ‘I was eager to donate but I’m allergic to the medicine so I couldn’t no matter how much I wanted to’. You can say that and still get some credit. But to say that I couldn’t donate because I eat pizza and biscuits for breakfast? That’s not heroic. Now I have to donate as a matter of principle.
At no point did anyone at DKMS ever suggest that I was too overweight. They never even suggested that there was a weight limit; this was a conversation that didn’t require anyone else but me. A figment of my insecure imagination, a stupid, insensitive clash between my fear of pain and my fear of failure. I’m worried about all of this as someone is lying ill. Gathered around someone’s bed (maybe it is a small child being lovingly supported by their parents and grandparents or maybe it’s a small family of siblings gathered around their father) are people waiting for a match – waiting for hope. They are living a real nightmare every day so I can at least face a few of my own fears. Right?
23 September 2019: The Blood Test
A flash of light wakes me up in the early hours of the morning. A thunderstorm is rolling through the city, bringing with it some much-needed rain after a long, dry summer. Today I have to go to the hospital for a few tests to determine if I’m a match and if I’m healthy enough to donate my stem cells. I don’t mind hospitals. They are necessary, but I try not to visit them much. As the old joke goes: that’s the problem with hospitals, they’re full of sick people. I look up the quickest route to Coventry University Hospital. I don’t drive, but it’s the local hospital so it shouldn’t be too far.
A two-hour walk! I’m even more glad I’m not ill or in a rush to get to a city hospital that is nowhere near the city. My officemate kindly agrees to drive me but only after he reminds me that it is the least he can do because I was picked for such a painful procedure instead of him. In the pouring rain, with limited visibility we travel to the furthest corner of Coventry, narrowly avoiding at least three collisions on the ring road and witnessing a few near misses at the junctions. At least we’re travelling in the right direction if anything happens.
Coventry University Hospital is an impressive building. It’s massive, clearly sign-posted (which is a rare thing) and the entire trip was actually quite pleasant. After only a quick argument with an automatic check-in system that refused to recognise my existence, a kind receptionist took me through to the phlebotomists. I entered confidently and proudly, assured that I’m doing a good thing. Besides, I’ve given loads of blood before so I don’t fear the venepuncture. I enter the curtained cubicle and drop everything. I drop the blood sample kit, my letter proving that I have an appointment, and at least two things I didn’t even know I was carrying. The first thing the phlebotomist sees when they enter is a very panicked man on all fours, collecting stray bits of paper.
Ok, so maybe I’m not as confident as I normally am. Why? Because I can already see myself spiralling if I get rejected because of the results of the blood test. What horrible illness might I have that will prevent me from donating? Am I riddled with dormant diseases, a walking petri dish of forgotten microbes? I do shake hands with a lot of people. And I don’t think I’ve been in contact with anyone suffering from the Zika Virus but now they’ve asked me I can’t help but wonder what if I accidentally was? I mean, I never asked any of my partners or friends if they had Zika. It’s not something you really ask, is it? Maybe I should start asking. Christ, what if I actually need a bone marrow transplant myself? If so, I really hope I get someone braver than me.
I don’t really know how these thoughts work. They are illogical but I am the sort of person who when standing in line at airport security starts worrying about whether they mindlessly packed some cocaine for their trip. I’ve never taken any kind of drugs, but what if in my tiredness I mistakenly decided to take some with me this time? Or did I accidentally pack a mixture of random chemicals and electronics that when combined in a hard suitcase just happen to form the makings of an IED? That’ll be just my luck. My Hugh Grant-ish accent and floppy hair are not going to be enough to make anyone believe it was an accident! Especially not as my social anxiety makes me sweat profusely. I feel guilty about something that doesn’t even exist – and it is hard to prove to a cynical security guard that you only look guilty because you think you might have committed a small criminal act of alchemy with an electric shaver, a laptop and some sharp gummy bears.
A soft midland accent snaps me back: ‘Can I have the blood test kit?’
‘Yes, of course. Sorry, here you go.’ I hand over the boxes and take a seat.
I sit there as she prepares everything. Phlebotomists. Remarkable people. They stand there all day surrounded by blood, listening to nervous people chatting nonsense, or grown adults hysterically fainting at the sight of a needle and they do it all calmly and with a smile. You don’t need any special qualifications to be a phlebotomist in the UK, just an ability to tolerate blood and a willingness to stab people.
‘We get called all sorts of things.’ The nurse straps the blue rubber tourniquet around my left arm. She pulls out the needle and I watch closely as she pushes it through my skin with great ease. ‘Vampires, bloodsuckers. We get those a lot.’
My own anxiety dissipates as I suddenly feel sorry for the phlebotomist. Her job is monotonous and difficult with a lot of responsibility. They are there to help people. They aren’t randomly taking people’s blood to frame them for a crime, or to Homebase as colour match samples so they can redecorate their living room in a gothic fashion. They carefully, assiduously draw blood so that it can be tested and help diagnose people.
‘Wow, they really want a lot of blood. I don’t think I’ve ever bled someone this much before.’ She places a third burgundy vial down and picks up another. ‘These are massive vials.’
‘That’s not helping.’ If I didn’t feel faint before, I suddenly did.
We finish packing away the blood samples. As she seals the box with brown tape I ask if it really is legal to send blood in the mail to get tested. Neither of us is certain. As I put my jacket on and prepare to leave, she stops me.
‘It’s a really good thing you are doing.’ A stranger’s validation feels amazing. Your friends always tell you what you are doing is a good thing but when a stranger looks you in the eye and tells you that, you suddenly feel like you can do anything.
My whole trip to the hospital takes less than fifteen minutes and as I’m leaving, I very happily realise that I get to reward myself with a large coffee and a couple of slices of cake. As I leave, I post the two boxes in the bright red post box by the revolving door and I take a moment to look around. This section of the hospital looks more like a shopping centre than a medical one. There’s a clothes store, a café, a bookshop. It has a veneer that looks comforting and inviting.
The people don’t look like shoppers though and the veneer is quickly dispelled. There’s a family rushing to get in as another group rushes out. The revolving doors grind to a halt, overloaded and overly sensitive like many of the scared and frustrated patients. Everyone here is feeling impatient, stressed and irritated. It’s contagious. The woman next to me wipes her tears away as she’s on the phone. A man on crutches pushes everyone out of the way in a nicotine rage desperate for a drag of a cigarette he’s been thinking about all day between treatments. The sight of a man dragging an oxygen tank does nothing to deter him; he’s only got a few moments and he’s going to enjoy them.
I might be scared about what’s ahead but luckily, I choose to be here.
Dr Kristopher Lovell 