The Lay of the Land, 6th December 2014

Two years ago today I had a pacemaker fitted. The year before that I was in an advancing state of heart failure. At the point of my diagnosis, I was Class IV on the NYHA classification chart; the subsequent class is “end stage”, which is what it sounds like. I have idiopathic hypertrophic cardiomyopathy, a disease where the myocardium is enlarged, without any obvious cause, weakening the left ventricle and impeding the heart’s ability to pump blood effectively.

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I used to play in a band called Carterhaugh. Kind of a strange band – sort of 1970s folk-inflected prog with some downtuned riffing and some traditional folk songs (Sabbath playing Fairport if you want a shorthand). The last line-up of the band, one that never got to play out for reasons I’ll get into in a second, contained three members who’ve all survived serious illness in the last few years. Between us we’ve come through bowel cancel, breast cancer and heart failure.

A bit of gallows humour is rarely a bad idea so we’ve made plenty of jokes among ourselves about our medical histories. The last of us to get sick was reminded more than once that her bandmates had faced similarly tough diagnoses and lived to tell of it, so she was expected to do likewise. The three of us have teased the bassist, the only one of us who hasn’t been ill, and asked him whether he’s feeling OK.

Two years today – on 6th December 2012 – in a hospital in Cambridgeshire I had my chest cut open beneath the shoulder blade and watched on a monitor while pacemaker leads were attached to my ventricles. You need to be awake during a pacemaker insertion so that the doctor can ask you to hold your breath at certain points to see whether the device is working as intended. You’re sedated a little bit, which makes the time go quicker, and your shoulder is numb so you don’t feel pain as the doctor makes the incision. But still, the sensation is strange. The area they’re cutting into is protected by a thick layer of muscle, so it’s not a delicate job. There’s a decent amount of pulling and sawing involved. I’ve likened the procedure (as that’s what they call it – it doesn’t count as an “operation” in NHS lingo) to sticking a knife into a shoulder of beef, carving out a little pocket and shoving an iPod Nano in it.

That day was the beginning of a new period in my life. Having a pacemaker fitted gave me a lot more confidence in my body. Before it was inserted, although I’d recovered far more completely than I’d been counselled to expect, I still carried myself like a sick person. Three words buzzed around my brain more than was welcome: sudden cardiac death. Hypertrophic cardiomyopathy is the leading cause of sudden cardiac death in young people. HCM is pitiless. When I became ill, I had been spared this fate and presented symptoms that were eventually diagnosed, but what if it I had a second “event”, this one instant and terminal? With a CRT pacemaker in my chest, I felt more confident that such a thing wouldn’t happen. I began to walk faster, push harder, go jogging (slowly – watching me in action is not going to keep David Rudisha up at night).

Of course, and here’s the irony, if such a thing were likely to happen, I wouldn’t have been given a pacemaker at all; I’d have been on the waiting list for a transplant instead. The reason I was given one was that I’d already made an extensive recovery, and the hope was that curing the lingering arrhythmia might give my heart a little extra help in repairing itself completely. Time will tell on that one. It’s still, relatively speaking, early days. The decision the consultants made to offer me the procedure was ultimately a financial one, as it has to be: is it better value for money to give the pacemaker to the guy who’s recovering pretty well and might live a full and basically normal life with it, or give it to the person who’s in a much worse state and is unlikely to make it to 40, pacemaker or no pacemaker?

So here we stand two years on, and it hardly seems five minutes since I wrote a “lay of the land” piece on the first anniversary of the procedure. It’s been by any measure the best year of my life. I have a wonderful relationship with my partner, Mel, who’s a daily source of inspiration and strength. I have a job I like a great deal, where I’ve made some important new friends. I continue to play music every chance I get. This year I’ve made a record with Sumner, on which I played drums and helped with some of the engineering. I’ve continued making records with Yo Zushi and James McKean; Yo’s will come out in January. We’re just finishing mixing James’s now (once a stubbornly persistent ear thing heals). I’ve released my own EP, written a bunch of songs (some of which I really like) and I’ve proudly watched Mel take her first steps as a songwriter and performer. Records I’ve played on have got national BBC radio play. I’ve been to Paris and Umbria. Next week I go to Barcelona. Next year Venice. Maybe Dubrovnik. Perhaps even, fingers crossed, New York.

And yet. Today most of all, but often, something nags at me, which I’ve wanted to write about on more than one occasion.

It’s a curious thing, but because I’ve recovered to the extent I have, when I talk about it with people who didn’t know me then, I sense they feel that recovery must have been somehow inevitable, or at least probable. I don’t like to correct them, as I wouldn’t want people to think I’m trying to take credit for my own recovery. But that reaction actually makes me angry.

When I used to go to the Papworth Outpatient Transplant Clinic (the name of clinic should give a clue as to the prognosis I’d been given), I would routinely be the least sick-looking person in the room. Not always the youngest, but always the healthiest, even when a slow walk around the block – 600 metres – left me needing a nap to recover. I will never forget a man of around forty in a wheelchair attached to a bottle of oxygen, his young children with him. I don’t know whether those children still have their father. I’ll never forget the young man whose age I couldn’t determine, because he was nothing more than flesh and bones. He was in a wheelchair too, he also needed oxygen to allow him to breathe and every breath was evidently a struggle. I didn’t know whether the young woman with him was his partner, wife, sister, friend or carer. He was there to see the heart and lung consultant. When you’re in a transplant clinic to see the heart and lung guy, it’s not looking good for you.

I always used to leave Papworth bearing good news – continued progress in my recovery, causes for cautious, realistic optimism – and yet, I always used to leave Papworth heartbroken. Any one of those people could have been me. The father who couldn’t get out of his chair? Why did this happen to him, a man with responsibilities, a wife, children? I can’t make any sense out of any of it unless I attribute it all to a cosmic rolling of the dice. And so the language we resort to when talking about disease (we talk about people “bravely” “fighting” a “battle” with an illness, as if that made more of a difference than access to good doctors and, above all else, simple dumb luck) is specious. Of course, some people respond well to being told, “You’re brave and strong and you can beat this”. But there is a widely evident net social ill that’s the inevitable result of too much of this. If we think our “positive attitude” or our “courage” or – God help us – “strength” is what saved us if we do survive, we imply that those who died or were left more disabled deserved their fate for not being as courageous and strong as we.

A little more truth and honesty and care about all of brothers and sisters, not just the ones whose survival we have a personal stake in, would be very welcome. Because really, you can’t see what I’ve seen and cling to any vestige of that mindset. Yet it’s so pervasive, across every strata of society, on the right and the left. Ayn Rand-reading, will-to-power capitalists are as guilty of it as “the spirit of the world flows through me” hippies. The truth is harder: the lives of all of us hang by a thread from the moment we’re born to the moment we finally die. At all times. A serious, non-negotiable, disabling or fatal illness can strike any of us at any time with no forewarning.

But we hide from that. It’s not a comforting thought. We talk about the amazing strength of those whose recoveries appear complete, and assume that the disabled are simply weaker specimins. We deny them financial help, we shun them, treat them as second-class. In my first few months of recovery – realising that I’d be living on £70 a week ESA forever and trying to get around in a world full of heavy doors and stairways, filled with people who just want to overtake you on the street and don’t give a damn about your dignity – I realised how complacent I had been. I became furious with the world, with my own selfishness and blindness. It was at least better than being angry that I was ill.

That anger hasn’t fully subsided. I hope it never does. There are things one should be angry about.

But most days I put all of this stuff to the back of my mind. I hunker down, do my work, try to make the people around me happy where I can, and be grateful for my extraordinary good fortune. I’m a happy guy for pretty much all the other days of the year. But today is a strange day for me. I’ll not be out having a party. It’s a sombre day, when I reflect on what could have been, and spend time with the person in the world who understands most how conflicted all of this stuff leaves me. Illness and recovery is not a zero sum game; I know that. That I’m still here does not mean that some other, more deserving, soul had to die to free up a space for me. And yet, undoubtedly, there are people I’ve encountered in wards and waiting rooms who are now dead while I am not. I fear my contributions can never be enough to justify the enormous cosmic judgement that came down in my favour.

7th December is my new year’s day. Another year begins tomorrow and I’ll again look to the future with optimism and excitement. I have so much to be optimistic and excited about! But today I remember.

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