If you had asked me at the end of 2023 if I would live to see 2025, I’d have put my odds at 50-50. In the first place this was because I was still suffering frequent attacks of autonomic dysreflexia, and had no idea whether I would get sufficient care coverage, post-discharge, to prevent me for being left alone for hours at a time, my body duly trying to kill me. But it was also because I was seriously toying with the idea of not sticking around in any case.
The thing about the rehab ward where I spent last Christmas was that it was very easy to get outside independently. Hence this represented a sort of opportunity. Pick a night when it’s got down to freezing, make sure I’m only wearing a T-shirt on my top half, wheel myself out through the automatic doors to somewhere sufficiently dark, and use the vestiges of my hands to yank the power cable out of the wheelchair’s socket. From there, sit and wait. By my calculations, hypothermia and death should set in between 12 to 15 minutes – possibly less, given my wrecked body’s inability to regulate temperature. I can absolutely guarantee that the staff wouldn’t have noticed for hours. Eventually somebody would find me, of course, but by that point I’d be long gone.
Obviously enough, I didn’t do it – although I did have some trial runs, sitting outside and imagining what it would be like to stay there. What gave? A mixture of animal fear, residual hope, pride that I couldn’t go out like that, and witnessing up-close the effects of death after the guy in the bed next to me died of a heart attack.
But more than once in the year since, I’ve wished I had taken the chance when I had it. Ironically, it’s harder for me to put a decisive stop to things now than it was in hospital. Now, I can’t even get out of my front door without a carer. And that makes things tricky in terms of opting for the existential escape route. Not impossible, mind. It will just require some devious planning, the culmination of which being a nearby unmanned London Overground platform. And believe me, I’ve planned. It is one of my leading patterns of thought, when I’m lying awake at night, or during the two and a half hours of daily degradation that constitute my compulsory morning routine. I guess that’s why I spent Christmas Eve reading the Wikipedia page for “rail suicide”. Season’s Greetings to you, too.
What keeps me alive these days? Inertia, I think. Somewhat ironically, when I’m actually out of bed I lack the motivation to go through with what I’d earlier promised myself, as I was lying prostrate and helpless, that I’d finally get on with. Paying a private psychologist to deem me mentally competent, so that my Dignitas application can actually go forward, always gets deferred until tomorrow. I can never quite be bothered to set up the ruse required for me to access the train tracks alone. My therapist says that it’s the part of me that wants to live that’s keeping me alive. I’m not so sure. I suspect it’s my carefully calibrated depression, the parasite in my mind, feeding off my misery, whilst being careful not to push me so far that I take us both out for good.
They say New Year is a time for resolutions. An ambiguous phrase, dangerous for me in at least two ways. Resolve to…overcome my inertia? Take decisive steps that will constitute a resolution of this ongoing shit show? I’m so God-damned tired.
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Back in my old life I used to say that my second biggest fear was going to prison for a crime I didn't commit, whilst my first was becoming blind. And actually, I think I’d still stand by that. Going blind would mean losing almost everything that I have in fact lost, but also the ability to read (and hence, the ability to work). That would be even worse than this. And whilst I certainly experience my new life as a colossal loss of freedom, it is doubtless better than the horrors that prison would entail. Better to be unfree and safe, than unfree and unsafe.
Still, there is perhaps a similarity to be drawn. After all, I am in my own way doing time. A life sentence this is, and so I cannot stoically count down the days until release. (Even if science one day grants me an unexpected pardon, I cannot sensibly plan for that.) But what I can do is hope that eventually acceptance settles in. Until it does, I simply have to do the time.
But one thing that make this difficult is not knowing how long it will take. For a while I have fixated on “two years” as around the length of time needed to adjust. That is based on some evidence from the scientific literature, and the testimony of others. But everybody is different. And are we talking two years from the day of the accident? From going to rehab? From being discharged from rehab? From finally getting out of a care home? I don’t feel like I’m any closer to coming to terms with this, with accepting it, than I was a year ago. The professionals tell me that there is no reason to think that I won’t, like everybody else, adjust in time. It is in human nature to do so. But what they can’t give me is a timeframe, a date by which I can expect to be “better”. Not knowing how long this raging inability to let go is set to continue is part of what makes it so hard to let go.
During my bleaker moments, when I wish I hadn’t survived in the first place, or had put an end to things a year ago when I had the chance, part of what motivates these thoughts is that I have nothing to show for having stayed alive. When I look back over the past 18 months, it is hard to think of a single thing which it was worth having lived to see – at least, not at this price. Going back to work, for example, is only an achievement in the context of the accident. Likewise having this Substack syndicated by The Guardian: a flattering confirmation that I still have the ability to write, but hardly one that compensates for the root cause of why I’m writing. I’d really rather not have gotten into this mess in the first place. But then, I suppose that is just the nature of doing time. Nobody goes to prison and expects to “get something out of it”. You do your time, and hopefully when it’s over, your life can start again.
Meanwhile friends get married, have kids, get new jobs, buy houses, move abroad. I sit in a chair, staring at a screen, a POW captured on the battlefield of my own body. Will I see 2026? Probably. But if I don’t? Hard to imagine it’ll be any great loss. Fritter away, the moments that make up my dull days. The sun races around to come up behind me again. Maybe one day ten years will have gotten behind me, and I’ll be happy just to warm my bones beside the fire. We’ll see.
I first read your blog in the Guardian and I was thinking about you on Christmas Eve & during the past few days, wondering how you are.
I worry anything I write makes me sound a bit weird and I don't want to cause you any upset or annoyance. I guess I just wanted to say people you don't know care about you Paul.
I used to work in the Oncology Department at Southend Hospital. Not in any practical capacity, you will be pleased to hear, but on the admin side of things where there are still stakes but much lower – it's the penny fountains vs the high roller blackjack tables. As matter of fact, I started out there as a volunteer and made myself indispensable and eventually they hired me to cover a long-term absence.
As I was working, I kept one eye on the patients in the waiting area. I brought water to those who were coughing and, when necessary, I sat with them and I helped them to sip it. I spoke to some of them and listened to what they told me and to their conversations with others. All of this observation confirmed to me a general truth that has been expressed many times before, by far brighter souls and with greater eloquence: That no matter the crisis, people will eventually sidle back towards their former baked-in dispositions. Cheerful people will be cheerful people again despite staring down the barrel of oblivion. If you are tenacious and ambitious and goal oriented, as I have good reason to believe that you are, then you will be those things once more, and in the most positive sense. Just give it time.
A dear friend to whom I had written over Christmas – a former co-worker from the Pathology Department – responded to me a few days ago with the news of the death of her mother. She had been diagnosed with pancreatic cancer and did not live for very long after her diagnosis. Her final days on Earth were filled with acceptance and gratitude for her life and love for her family. I was not surprised by this, but, in hindsight, it makes me wonder whether acceptance of some life-changing or life-ending condition isn't one of those processes that either expands or contracts to fill the time that is available. Hence your long road towards coming to terms, which at present appears to stretch beyond the horizon.
The music journalist, David Cavanagh, committed suicide by train. It was around this time of year. In a note that he left behind, he said that he had delayed his death by a few days out of consideration for those who might be trying to get home for Christmas. None of that is of any consolation to the driver of the train.
You have committed the cardinal Bond villain error of outlining in considerable detail your own plans, which makes me wonder whether you are there yet, standing at the point of no return. I know my way out of this world, after my turncoat immune system has finished setting up the dominoes and I hear the accelerated second-hand tick as they fall as a blur in rapid succession. Nobody else knows the details. I will not say goodbye to anyone, or give anyone reason to suspect that I might be about to put an end to things. I will just go.
I have no doubt that you ponder your death and the ways in which it might be achieved, but this signposting; you sound like someone who isn't ready to give up on life, but who is also flailing around for a good reason to live. I might add that, now I have expressly stated that I don't believe that you are at the point of wheeling yourself in front of a train, you will be morally accountable for the online beat-down and cancellation that I will receive should you choose to do so. Factor that variable into your moral equation that attempts to find a balance in the relative nature of human suffering. You are going to need a bigger whiteboard than the ones that TLR employees use to write down their daily platitudes.
You could instead, follow the approach that was advanced by a great thinker of a bygone age: Bring yourself, figuratively, to the end of the platform where it tails off and where you are apart from the other commuters, and then, from this isolated vantage, assess their common values, and, where you find such things wanting, replace them with different values.
In 2007, after months of being prodded and probed, I found myself sitting on a plastic chair at an arbitrary point along a hospital corridor, waiting for somebody to give me a diagnosis. I was in a great deal of pain. I was hunched over and trying not to black out. As I watched the pairs of legs going back and forth, it occurred to me that there was work to be done in this place. When my condition was stabilised, I signed on as a hospital volunteer. It was the best thing I could have done because, in the wake of my diagnosis, I was very angry at the world and it was consuming me. Putting all of that to one side, along with my fears and the minutiae of my illness, and focusing instead on the lives of others – making their problems my problems – freed me from my solipsism. I began to focus less upon myself, and I think that I may have done some good; I hope that I did. Furthermore, it brought me back into the world from which I had been estranged by my illness.
I suggest to you that there is something to be gained from seeking out work, perhaps a few hours a week, where there is no financial incentive (you do it because you want to do it) that brings you into contact with others who are on the back foot in some way or other. If you can make those people your focus and provide some practical assistance that moves them beyond dependency towards improvement and independence, then you will have less time to devote to the directorial nuances of your death and you will be more integrated into the fabric of society with all of its attendant joys and sorrows. It's not plain sailing and politics invariably dribbles down into whatever you are doing, as it does in all areas of life. However, If you can focus on the work, you cannot lose.