Category Archives: Life & illness

The Lay of the Land, 6 December 2016

Four years ago today, I had a pacemaker fitted at Papworth Hospital in Cambridgeshire. 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. My diagnosis was idiopathic hypertrophic cardiomyopathy, a disease where the myocardium is enlarged, weakening the left ventricle and impeding the heart’s ability to pump blood effectively.

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I’ve done one of these each year on 6 December since I started my blog, and they’re shoot-from-the-hip affairs. They’re a snapshot of how I feel on this day when it rolls around. The 2013 and 2015 pieces were positive, contented pieces; the second one was probably the angriest thing I’ve ever written on this blog..

This year, it’s been hard not getting angry every time I read a newspaper. But we on the left must resist the temptation to wallow in anger, bitterness and resentment. Our world is being remade into something ugly, and it will take a long, long time to undo the damage that’s been done.

Yet we must believe it can be undone. The only alternative is despair, cynicism, nihilism: destructive emotions that help no one, change nothing and destroy a person from within.

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In the meantime, you have to live life, with all its ups and downs. This year, my father’s sister, Marion, died unexpectedly. She was only 72 and had not been ill. I’ve also seen more friends and relations get married and start families. Mel and I look to our future and make our own plans.

We’ve been fortunate enough this year to see Santorini, Tuscany, Madrid and Liverpool, and I’ve just got back from Biarritz, where my company had its conference. I’ve continued to make music, helping James, Mel and Yo with their releases, and planning for my own, which will definitely be happening in 2017. Enough waiting. Time to make it happen.

I began running again, after my mum remarked that I never mentioned going running any more. I started, on the hottest day of the the year, by seeing if I could do 2.5 kilometres. Two weeks later, I ran 5k for the first time since I was at school. Two months’ after that, I ran 10k to raise money for Southend Hospital (where I was an inpatient on the cardiac ward). Next spring, I plan to do a half marathon, possibly for Cardiomyopathy UK. Training begins in earnest after Christmas.

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Things are fine for me. But they are not fine looking at the wider picture. Far, far from it. In a year of remarkable, unpredictable political upheaval, it seems daft to try to second guess the future, but next year is likely to be another difficult one for too many of us. It may seem an ivory-tower kind of exercise, but I’ll still be here, looking for music that means something to me. It still feels like a job worth doing.

Back at the weekend with drums. Take care, y’all.

running

Nearing the finish line

 

The Lay of the Land, 6 December 2015

This was mostly written last Sunday but wasn’t published at the time – halfway through writing it, I yawned, stretched and pulled a muscle in my shoulder, then spent the rest of the day lying on my back in a world of ow. I’m better now.

Three years ago today I had a pacemaker fitted at Papworth Hospital in Cambridgeshire. 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. My diagnosis was idiopathic hypertrophic cardiomyopathy, a disease where the myocardium is enlarged, weakening the left ventricle and impeding the heart’s ability to pump blood effectively.

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I started this blog in spring 2013, so this is the third “Lay of the Land” post I’ve written. The first was a kind of round-up of all the changes that had happened in my life in the previous six months – starting a new job, moving to London, beginning a relationship with Mel – and how amazing it was to me that any of that had happened, given the place I’d been in. Last year’s was a very different piece, easily the angriest thing I’ve ever written on this blog. It was about a subject I care about very much (how the language we use around illness shapes the way we think about it, in a profoundly negative way). I haven’t changed my opinions on any of that stuff; indeed, I’ve seen some terrible, inexplicable things happen to good people this year. It’s not a comforting thought to us that a life-threatening illness could overtake any of us at any time, no matter how cleanly we live our lives, or how “strong” we think we are. But we must realise it, about ourselves and about others. It’s the only way we might develop empathy and a fair and just social policy. We sure don’t have one now, and as a nation we don’t vote as if we want one. I won’t get into that again now. I said it all last year and would just be repeating myself.

So 6 December 2015 – the third anniversary of that pacemaker procedure – finds me tired, but happy and looking to the future. I played a gig with James McKean last night, drumming at the Harrison Arms, and so I’m pretty shattered from having lugged a set of cymbals, a snare drum, and a kick pedal around all day. Which explains the tired, but I’ll be fine tomorrow. As for the future, let me tell you about that. First up, I remain healthy. I go for check-ups and scans and pacemaker tweaks at St Thomas’s Hospital in London, and at a scan earlier this year the cardiac physiologist told me that according to their classification chart, my heart is now within the “normal” range; I’ve improved from “severely impaired”, through “moderately” and “mildly” impaired to normal. My next trip to St Thomas’s is in a week or so. Let’s see what they say.

In the last few months I’ve begun working full time at my copy-editing job. I’ve been there two and a half years now, and still enjoy it. Mel and I have been together for over two years and we continue to make plans for our future, and not just in terms of holidays and trips. I’m blessed with friends who understand and care about me, and who for reasons better known to themselves than to me seem to like having me around.

I continue writing, recording and playing, both on my own and with Mel, James and Yo. Mel released her first EP this year, Yo his third album. I did my usual jiggery-pokery on both. James’s second album is pencilled in for March (my work on it is done; it’s just mastering, artwork and manufacture to go now), and I’m looking to release a proper full-length CD album soon, too, which is a long-held ambition but not something I’ve ever done before. Nearly finished on the music, but then that too will need artwork and so on. I was hoping it’d be ready to come out in February, but it might be a few months yet.

That’s what’s going on with me. But that’s only a small part of a wider story. More importantly, the lives of my friends and family members continue to change and develop, mostly in good ways, too. Just one small, happy example: I’m now the uncle of a nephew as well as a niece.

No life is perfect. No world is perfect. This is not the best of all possible worlds. There are things that I would change if I could in my life and in the lives of those closest to me. But I look around at the people I know and see folks who are mostly happy, mostly fit and well, mostly getting quietly on with whatever lives they have found themselves in, mostly fairly content with those lives. And speaking for myself, I have everything to be thankful for, much to look forward to, and lots to be getting on with.

I’ll be back on Sunday.

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.