Groundhog Day of the Apes
A permanent solution to a permanent problem
If nothing else, I'm learning a lot about myself on this “journey”. For a start, that I can't stand hearing people refer to coming to terms with tetraplegia as a journey. Journeys are things that you typically choose to undertake, with a predetermined destination in mind, usually because doing so will in some way improve or enrich your life. This is not a journey, no matter how often various medical professionals refer to it as such. It is a fucking catastrophe.
But anyway, one thing that this catastrophe has made me acutely aware of is that I'm far more sensitive to noise than I previously realised. This was masked for most of my life by the fact that I'm quite happy listening to loud, heavy music when the mood takes me, and that I have often preferred working in cafes rather than libraries. Indeed, I often liked working in cafes whilst listening to loud music through headphones. The artificial, never-quite-quiet environment of the average library was weirdly more distracting than the natural commotion and bustle of a public environment drowned out by my preferred records. Yet what I never appreciated before was how important the option of quiet always was.
I've never had a problem working from home. Why bother getting up before 9:30am if you can be doing your emails over breakfast at 9:35? Whereas many people benefit from leaving home in order to concentrate on work, I always found the potential distractions manageable. But I now realise that one of the major advantages I always found in working from home was that I could always bring about silence whenever I needed it, mostly so as to augment concentration. Just turn off the music, or go sit in another room. Easy.
How things change. I now find myself tormented by the fact I can virtually never attain silence. It starts in the mornings, when the day shift begin their activities. Commotion and shouting up and down the corridor as they work their way through different patients’ rooms. The walls are thin, and I can hear pretty much everything going on next door and out in the corridor. Every morning I spend hours lying in bed, waiting for various things to be done to me, whilst the noise of the surrounding commotion drives me mad. Which feels churlish, given that compared to the previous eight months living in hospitals, it is far calmer here in the nursing home. But the fact remains that I haven't had a peaceful morning since the day of my accident. It seems like such a small thing, but I fantasize about waking up naturally, slowly, with only the sound of birdsong coming through the windows. What I would give for such a sense of restfulness. Instead I wake to other people's noise, every day.
As the days roll on things pretty much stay the same – but now with music playing from patients’ rooms, and the new TV that has been installed near the entrance showing some Marvel film or another. At night, I hear the rasping of the ventilated patients on the other side of thin walls, and the periodic wailing of the poor guy whose attackers left one side of his skull caved in. True, it is quieter here than a hospital – but that is not the same as quiet.
I suppose that the reason the noise bothers me so much is not only that I find it intrinsically aggravating; that I am more sensitive to invasive sound than I realised. It is more fundamentally that it represents, and is a reminder of, the total lack of power I now exercise over my own life. I don't mean that I wish I could shout at people to shut the fuck up, and have them obey me (although I do wish that quite often). It is more basically that I can't just get up and leave; just go somewhere quiet and be alone. I have no choice but to lie in bed as sounds bombard me uninvited. I am powerless; dependent. Degradation, in my case, has a soundtrack.
None of which is helping the sense of starring in my own personal Groundhog Day. Unsurprisingly, given that I live in an institution which I cannot leave unless somebody accompanies me, every day is basically the same. Mornings are lost, waiting for my various needs to be dealt with. Afternoons I spend trying to work, with decreasing levels of enthusiasm as the repetition of tedious third-rate scholarship piles up (that, after all, is the reality of life as an academic). Evenings I play some online chess, wondering how it is possible to get progressively worse as the days pass. Then it is back to bed for yet more TV. Rinse, repeat. I never go anywhere new. I have no plans. There are no holidays to look forward to. No weekends away. Just more of the same, day after day. And the monotony is becoming unbearable; sanity slowly erodes. Bill Murray, I get it now.
But actually if there is a film that my mind keeps being drawn to, it is more often the original Planet of the Apes. Every lunchtime I wheel myself out of my bedroom, down the short corridor, to a small area by the entrance. I park myself at the table, and the staff serve me my food. Alongside me sit three of the other patients, the only three I ever see, the only others who ever leave their rooms. They have been seated in front of the new television screen by staff, although I'm not entirely sure what the point is. Two of them never open their eyes, whilst the third is the chap with brain damage who rarely focuses on the screen for more than two seconds. But perhaps it is good for them, soothing in some way, to get a change of scene. At any rate, rather like Charlton Heston in the 1968 movie where the apes rule and humans are enslaved, I feel like I have arrived in a world turned upside down. I am able to speak and reason just like those calling the shots, but it is pretty clear from looking at me that I am not one of their kind. Hence nobody who matters is under any illusion about where I belong: kept in a pen with the rest of the dumb creatures, the other animals who lack the ability to organise their own lives. The powerless.
And so it might not be especially surprising to hear that I am, yet again, not doing very well. To be sure, and as any psychiatrist worth their salt would remind me, psychological health is no more a straight-line recovery process than physical health in a case like mine. It is not especially surprising that the novelty of leaving the hell of rehab, getting some minimal privacy, and being able to read serious work for the first time in months, gave me an initial mental boost. Likewise, it is also not especially surprising that this was not a magic cure; that working through so many levels of trauma cannot be fixed so easily or so quickly. And yet I am still taken aback by the scale of my mental collapse. I feel on a par in terms of hopelessness, the inability to accept and adapt, as at any other time since I regained consciousness. For a few weeks, I genuinely thought I was getting better. I do not feel even remotely close to that anymore.
Which is how I found myself the other day staring at the road outside, weighing up whether to push myself down to the A10 and wait for a lorry. Recognising that I was in a severe downward spiral earlier in the day, I had forced myself to do what now passes for exercise: switching the power assist function off on my manual wheelchair, managing to put on my special tetraplegic gloves, and forcing myself to do ten laps up and down the car park. Given the loss of my sympathetic nervous system, this brings me no intrinsic satisfaction whatsoever. But I try and compensate by mentally patting myself on the back for having done it anyway, given that exercise is an important thing for me to maintain so as not to lose my lung capacity, and various other abstract health benefits. Plus on this occasion, I figured that if I exhausted myself this might work as a method for dialling down my more unpleasant thoughts. But no such luck. My brain rewarded me by constantly reminding me that not so long ago I used to climb mountains…and now I push myself around car parks in the suburbs of north London. What kind of a life is that supposed to be?
Hence why I ended up looking down the road, and deciding whether to just fucking get on with it and end this nonsense. Although not before calling my mum, and spending a while begging her to make the trip down to London and help me end my life. A delightful thing to do, which had the sum benefit of making two people feel miserable and helpless, rather than just one.
Anyway, as is fairly obvious, I didn't go through with it. I had a couple of close friends due to visit a little later, and it seemed too awful to have them arrive to panicked staff trying to work out where I had absconded to, with it not being particularly hard to guess. When they arrived later, I was genuinely glad to see them. But throughout the time they were there I felt submerged in an invisible fog. I did a decent job of busking my way through, pretending to be engaged in conversation and somehow my old self. But throughout I felt cut off, absent, almost as if I were watching myself from across the room, playing a role. I think they knew something wasn't quite right. But I made sure they didn't ask.
All of which has led me to a decision. I have begun the process of formally applying to Dignitas, with the eventual possibility of assisted suicide. It is important to stress that at this stage nothing changes. Many more steps will be required if I am ultimately to go through with this, and I will have the option of changing my mind at many points in the future. (Some people have tried to tell me that I will not be eligible because I am not terminally ill, but that is incorrect. I have done my research and although there is no guarantee that I will be accepted for consideration, tetraplegics from Britain have indeed used the Swiss service before.) Why am I doing this, given that I have previously written about how I am unlikely to actually commit suicide? At the very least, what this gives me is the psychological comfort of knowing there is an escape route. I am so tired of feeling completely trapped, forced to stay alive by other people, with all the power and control removed from my own life. Even if I don't take the option, knowing that the option is at least there provides a kind of comfort: the knowledge that I still have a final small amount of meaningful agency, that I can finally make this stop if I want to.
It is also, quite frankly, attractive to know that if I do want to make it stop I can at least do it in a painless, risk free, dignified manner. The alternatives left to me are either to tip myself into the nearest canal, or hope that a passing lorry is going too fast to stop. Furthermore, if I do go down this route everybody who cares about me will know that it was a long-term decision that I made after careful reflection. Indeed, by writing about it publicly here I hope to shield anybody who may assist me in future from the realistic possibility of prosecution under UK law. Making it clear that this was my decision, from which nobody else gained, should ensure (as in the vast majority of previous cases) that the CPS decides there is no public interest in prosecuting anybody kind enough to help me exercise some final control by going to Switzerland.
I sometimes reflect on the cliche that suicide is a permanent solution to a temporary problem. The thing is, for me that's not true. It would be a permanent solution to a permanent problem. The fact is I am not going to get significantly better, physically speaking. The things that used to make my life meaningful and worth living are now forever impossible for me. Given the reality of my physical impairments, there is a hard limit placed on the kind of life that I can ever attain in future. It is at best a second-rate life. And I just don't do settling for second best, as anybody who knows me will tell you.
Here is the reality of my situation. A year ago, I had everything. Now I have nothing. Or if not nothing, then too little left to make it seem worth carrying on with. The life on offer to me is fundamentally not one that I want. I didn't choose it, I didn't ask for it, and all I want now is to be given the final say over whether or not I continue to endure it. I have consistently wished that I had been euthanized upon my admission to hospital following the accident. Not a single time in the past nine months have I been glad I was saved. For almost as long, I have maintained the ritual every night before I fall asleep of praying that I do not wake up. But I always do. Instead, I would very much like it if one day I can drink a glass of liquid that ensures I do not. Or at least, to know that the option is there if I want it. In a life now conditioned in every facet by powerlessness, I ask only that I please be given power over this, if nothing else.
The trend towards re-framing, as a journey, what Homer Simpson once accurately described as “just a bunch of stuff that happened” embodies the narcissism of an age where the tools of mass communication are more commonly used as a mirror – one that reflects an augmented reality that frequently dials-down on hard-cornered truths. A journey implies a sense of purpose and destination; destiny even. It dispels, to the peripheral reaches of the mind, the uncomfortable notion that, more often than not, we are drifting through life like pieces of seaweed on the current.
At the hospital where I used to work, the patients who were out of options were placed on an end of life pathway, which always made me think of The Canterbury Tales. What lies at the end of the end of life pathway? A euphemism commonly used by nurses in reference to patients who had recently slipped the mortal coil, described them as having “gone to Rose Cottage”.
Who wouldn't want to visit Rose Cottage with its pale-pink exterior walls, and trellises, and its cupboard-under-the-stairs toilet conversion that shows traces of the old wallpaper. Just watch your head on the low beams of the bedroom ceilings.
Any journey can be transformed into an amazing journey when it is viewed through the prism of reality TV. Whether your path to greatness is paved with a stepping stone arrangement of Victoria sponges, or by an over-seasoning of classic songs with melisma, in a bid to secure a future as the kind of music industry houseplant that Simon Cowell will eventually forget to water, you may rest assured that it will be amazing. Don't forget to remind everybody how amazing it is. They will want to know. Even if they don't, they will still need to be told.
You are laying the foundation for your own exit, though hopefully that will not be via the A10, which will only take you as far as Kings Lynn. Furthermore, you cannot realistically expect your mum to push you through the doors to Valhalla and not immediately be laughed out of the place by Odin and his mates.
There was a music journalist called David Cavanagh who always struck me as a sensitive and principled man. These traits left him vulnerable to the rigours of a profession that is not kind, and where one needs to put one's elbows out and carve a niche. Despite his abilities as a writer and critic, he struggled with the hard realities of the industry. On the 27th December 2018, he stepped in front of a high speed train. He mentioned in his suicide note that he had delayed killing himself by a couple of days so as not to inconvenience anyone who was travelling home for Christmas.
The circumstances of his death greatly troubled me and still do – the violence of it. This was a man who lived by the pen, but who chose to die by the sword. We are back to this idea of the imposed narrative of the journey – that a man's death must be consistent with the way he lived. If Cavanagh had swallowed the modern day equivalent of hemlock, after first arranging for the delivery of a KFC party bucket to the nearest shrine to Asclepius, I might have been more able to accept that.
You have set your sights on intellectual peaks, along with the more conventional rocky variety that have contributed to your present circumstances. I think of you more in the vein of Ambrose Bierce; a man who straddled the worlds of thinking and doing; a veteran of the American Civil War who became a journalist, before disappearing into the Mexican Revolution in his dotage. The closest thing that we have to his last words are in a letter that wrote on the 26th December, 1913 (again that awkwardly-shaped liminal space between Christmas and New Year, where souls fall through the cracks): “I leave here tomorrow for an unknown destination.” When he wrote these words, Bierce would have meant that he literally did not know where Pancho Villa's army was going next, though I expect that a man with his elevated levels of sarcasm would have acknowledged, with hindsight, the dramatic irony laced into that final sentence.
In this context it is hard to think of you willingly fading away. Not when there is a current of willpower that breaks through the surface of reality and compels you to haul yourself around the car park, and thereafter to roam the foothills of academia, and also to engage in the losing battle that is chess. Beyond the nursing home, which is a transitionary step on what I would not dare to describe as a journey if I were within charging range of your wheelchair, there is another chapter that occurs in a space that is your own.
I recently lost a really good DSA mental health supporter (trauma and autism informed) and I am now stuck with one that spouts the ‘life is a journey’ or, even worse, ‘life is an adventure’ lines whenever I dare to say that I’m not happy with my life and situation. I spend the sessions staring at the little screen of me in the corner to see if I’m scowling too hard at her surface level suggestions of what I can do to be happier whilst not considering the complicated situation I find myself in, so I can’t imagine how frustrating it is with yours.
I think people are scared by the word suicide mainly, every time I mention it, I follow it up with a mandatory ‘I’d never actually do anything don’t worry’ but that then defeats the entire point of bringing it up either. Then, the whole ‘temporary problem’ argument fails to acknowledge that even if you do manage to get over that problem, which isn’t always the case you you know all to well, there’s probably another 10 problems that have emerged since then. It’s a shit thought to have, yes, and it makes other people feel bad but I think we do need to talk about it more openly without others jumping to conclusions and not hearing your thought process out properly. Most of the time it’s just trying to feel heard and understood, which I think assisted suicide is good at too, because even if you don’t go through with it, people are taking you seriously and not treating it as a temporary moment where you’re out of control, but rather recognising the very real pain and giving you some power over something you do own, your life.
I obviously don’t want you to die, but I think you should be taken more seriously when you say that you do have these thoughts. It’s Groundhog Day in itself when you get the same repeated general advice you get on reasons not to kill yourself, you don’t speak about it for a while and then when you do again, it’s the same list of reasons yet again. I think it’s harder for people that study philosophy, because we know where the repetitive advice comes from, and more importantly, we know how to challenge it because it’s what we are trained to do, especially if you don’t subscribe to the same philosophy yourself (e.g. the world/ life is inherently good for everyone).
It’s hard, and your pain and want to die is a natural response to the situation, after all you need to consent to a journey, otherwise it’s just kidnapping.
I’m glad visits are making it more bearable, too.