Following a suggestion made in the comments a few weeks ago, I have recently been reading Melanie Reid’s The World I Fell Out Of. The author came off her horse in 2010, breaking her neck and her back, leaving her tetraplegic. An established journalist, she almost immediately began writing the “Spinal Column” for The Times newspaper, which as far as I am aware still runs today. The book is her memoir of the immediate aftermath of the accident, and the years of struggle that followed. And it is very good indeed. Perhaps unsurprisingly, she is an excellent writer. The pacing and balance are calibrated perfectly, and she oscillates adeptly between narrative and insight. In a world where most books are bad, it is nice just to appreciate one for being good, over and above whatever its central topic happens to be.
Obviously enough, though, her central topic is tetraplegia. Regarding which, anybody who doesn’t get their fill of misery and horror from reading this Substack (weirdos!) should check out Reid’s book. Like me, she has no interest in pulling her punches. She tells it exactly how it is, in all the gruesome, scatological, humiliating horror. There is no attempt to play the “inspirational cripple”, to offer a look-on-the-bright-side memoir that will make the non-disabled reader feel that some residual justice remains in the world. I salute her accordingly; a woman after my own heart.
It is also interesting to see just how routine my experience to date turns out to have been. Like me she found the joy of music destroyed, to be built back only haltingly and at high risk. I too find it a complete confusion when people congratulate me for being courageous. (Being described as such presupposes some kind of choice to do the hard thing, when one could do the easy thing instead. But the core reality of tetraplegia is that one has absolutely no choice other than to continue trundling through this circle of hell, at least for the first year. Others make all the substantive choices for you. Courage simply doesn’t come into it.) And like her, I find the devastation of every single aspect of one’s personality too much to cope with; I fear that adaptation to this new reality is incompatible with whatever is left of who I was.
Having said that, there remains plenty of scope for unhelpful negative comparison. One of the mantras you are taught early after spinal injury is that “no two spinal injuries are the same”. This is just true as a matter of physiological impact, as well as long-term recovery outlooks. But one thing the mantra is also good for is to encourage you not to make comparisons with other people’s situations. Precisely because no two injuries are the same, comparing yourself with others is by necessity a mug’s game: you can always find things that others are doing better at than you, and hence torture yourself by comparison. Unfortunately, however, I am a seasoned pro when it comes to mugging myself off. Hence, I can find plenty in Reid’s book to be envious of. Such as:
She got nearly 11 months in rehab, whereas I barely got three and a half. She goes from being diagnosed as a “complete” tetraplegic (classification “A”, the absolute worst outlook) to improving gradually to an “incomplete” (classification “C”) patient, a much better outlook. By contrast, I have resolutely stayed “complete” (“A”) from day one, despite fervently hoping that I would tread the same path as her. Reid has also always had more use of her right hand than I’ve got in either of mine (and hers further improves with time). She was able to return home to the house that she loved, whereas I cannot. She has daily routine visits from care staff, but is otherwise safe to be left to manage her own life, rather than being a 24 hour dependent. She has a son, and a husband who stays with her, and whom she explicitly describes as giving her reason to stay alive. I have no partner, no children, no brothers or sisters, and the nagging sense that the future will be very lonely, trending in only one direction regarding the pointlessness of this farce.
Like I said, mug’s game.
Still, when I desist from playing, there are other things in her story that I can very much empathise with. Most strongly of all, that here is a woman who clearly loved horse riding every bit as much as I loved climbing. And I do mean love. Not in the sense of “really like it a lot”. But literally, in the sense of in love. The way normal people fall in love other human beings. And hence, the grief at having such love ripped away is of the sort that is normally reserved for the death of another person. Which likely sounds confused, or implausible, or perhaps even just insane, to anyone who hasn’t experienced what I’m talking about. Yet Reid proves to me that it is real, and she captures its truth with poignant elegance. I took that strange comfort in hearing somebody else describe the kind of pain that I have been through; from the knowledge that I am not the only one who has hurt like this; that I am not simply mad, but mad from grief. Indeed, for reasons that are best left to the author’s own words, the loss of her love was in the end even more cruel than mine. Reading her book provided one of the few times that I have truly felt, rather than just conceded in the abstract, that yes, it really could be worse.
Another area she captures dramatically well, and that I had yet to focus my own thoughts regarding, is the depth of horror inaugurated by the loss of touch in a tetraplegic body. Like her, I have lost feeling in about 85% of my physical self. The tops of my arms, tops of my shoulders, my neck, and my face, are all as before. But my hands get very fuzzy (the left even more so than the right), and the underneaths of my arms feel almost nothing. From the armpits down, it is a dead zone on all areas of my skin. As a result, I have now lived for over a year cut off from the sensation of another person’s touch, other than when my surviving parts are scrubbed down by paid professionals. And as Reid eloquently explains, this is psychologically devastating.
Touch is an integral part of normal human existence. A small child that shies away from it is displaying worrying symptoms of autism. Those who develop neurotypically seek physical contact with each other in various forms of play, and the touch of a parent is essential for comforting any distressed or hurt infant. Plenty of scientific evidence shows that those who receive (wanted) physical contact do far better, both physiologically and mentally, than those left without. We hug, we shake hands, we kiss, we pat on the back, even in repressed British culture. Touch matters. Yet a tetraplegic simply loses access to this most fundamental of human needs. Not least because now always meeting others whilst sat in a wheelchair. People can, and often do, try to hug you. But they must lean forward and bend over to get around the now permanent obstacle. What is delivered is an awkward, impossibly weak, approximation of a hug. The real thing is impossible. They cannot squeeze their body close to yours, you cannot squeeze theirs, and even if somehow you could, you wouldn’t feel it anyway. Even those who are lucky enough to have existing partners stay with them post-injury will never again feel being held, nor hold their loved one in turn, even if lying in bed together. It is a horrible, horrible, loss.
Reflecting on which has helped me make sense of something I experienced during rehab. I worked almost every day with one occupational therapist in particular. A little bit younger than me, great at her job, highly intelligent, with a dry irreverent sense of humour, a gorgeous South African accent, and who clearly looked after herself – well QED, I found her very attractive. Which was absolutely awful. Not because, as I well knew, she was happily married with a family of her own. Rather, because I was confronted with the unavoidable reality that even if she had been single, there was absolutely no chance that she was ever going to be interested in me. Having considered myself something of a catch until only recently, here was the realisation that those days were well and truly over. She – and anyone like her – was now most definitively out of my league. Having vaguely pitied those blokes one sees repeatedly stuck in the friend zone, it dawned upon me that I had now joined them forever.
All of which made a central aspect of my occupational therapy a total headfuck. A lot of what my OT spent time doing was trying to manipulate my fingers and wrists into greater flexibility and responsiveness. In other words, I spent a lot of time with my hands in hers. Now to be clear, this wasn’t in any straightforward way pleasant. In fact, it hurt. A lot. But sitting there while she bent my fingers and crushed my palms, it was the closest thing to intimacy I’d had in months. And because I fancied her, this obviously ratcheted up my sense of closeness. Yet my brain kept laughing at me for interpreting this new situation according to the old rules: get a grip, dickhead, those days are gone. Yes, she might be holding my hands. But the blunted messages managing to get up my spinal cord were most definitely registering pain, not pleasure. The result was not so much confusion, as a complete failure of mental processing.
I used to joke with her that although she hurt me the most, I liked my sessions with her the best. I claimed (and convinced myself at the time) that it was because even though she caused me pain, it was the price I was willing to pay for recovery in what I hoped for most. But looking back, I don’t think that was really what was going on. I liked those sessions because she held my hands: she offered me a closeness of touch, a shadow of intimacy, in a life now completely devoid of such.
Reflecting on which has made me acutely aware of a fact about my future that I had previously not yet confronted: that I will never properly hold another person’s hand again. Someone might take mine in theirs, perhaps even interlock their fingers, and squeeze. But I can never return their grasp, move my fingers against theirs, squeeze in answer. The loss of intimacy this entails is monstrous. I imagine that men who have not been through spinal cord injury would think that the biggest sensation-based loss one suffers is that you can never properly have sex again. (Yes, technically you can have intercourse, but that will now be a sensation-free parody, lying prostrate like a beached manatee, bag of piss placed delicately on the side.) But for me, an infinitely more painful loss is that I can never again properly hold a woman’s hand. This is the ultimate theft of intimacy, a denying of those myriad forms of closeness that go so much further than mere sex (let alone that ultimate parody, sex without hands).
In a crowded and competitive field, it may be the worst loss of them all.
After I read this, I thought about Henry Scobie – the protagonist in Graham Greene's novel 'The Heart of the Matter'. In the final pages of the book, Scobie consciously graduates through a succession of tasks that he will perform for the last time, prior to taking his own life.
If we regard Scobie as a non-fictional person – one who is not enmeshed in the determinism of his creator – then he has significantly more potential freedom than you do in your present situation. There are things that are beyond his control that set limits on his freedom, there are other things that may be negotiable, and then there is a range of achievable possibilities. For example, he doesn't have to kill himself. The miseries that have led him to narrow his options down to an eventual singularity are mostly of his own making, born of a prosaic cowardice; a failure to stand up to the unrealistic demands of his wife. That said, he can certainly go in other directions. Prison and penury likely await him if he does nothing. If he were more proactive, he could carve out a life for himself as a fugitive from justice in a foreign country.
The plight of Scobie enlightened me to the idea that, within the range of freedoms that are possible to us, we set our own narrower limits. I have been trying to recall the last time I made physical contact of any kind, however fleeting, with another human being. In 2024, I have had my blood taken and I have been manhandled into an MRI machine. That is the full extent of it. The friends who I see occasionally in person may nod their head at me in acknowledgement, and there the line is drawn. Those who might regard this as repressed masculinity fail to understand the psychology in play – the blank telepathy of two or more people who provide support just by being in each other's company, where the joys and trials of life are inferred rather than openly discussed, and nobody thinks to fling a drunken arm around your shoulder while bellowing the chorus to Wonderwall. It is a deeper bond that transcends words; that shows itself in simple acts of kindness and maybe in grand acts of sacrifice. I assume that, if any of these men put their hands on me, it would be with some functional purpose in mind. I certainly have the freedom to cultivate relationships with more touchy-feely individuals, thereby widening my human experience, but choose not to, as a matter of preference.
At the same time that most us exist well within certain limits of our freedoms, we are also commonly railing against barriers that prevent us from getting what we want, or what we feel we deserve. If we fail to approach these parts of our lives, that lie beyond our full control, with realism and moderated expectations, then we run the risk of being drawn into a downward spiral of anger bitterness and resentment.
In your extreme case, the spectrum of possibilities that are available have narrowed to about the width of a Venetian alleyway. There is a mental battle to be won; an acceptance, where you don't agonise over the things you can't have, because that can't lead anywhere good, but where you don't close yourself off to the possibility that things might improve physically, either as a result of rehab or through technological intervention. Accepting these limitations and finding ways to live well within them is not a tacit admission of weakness. Any man who is able to formulate a meaningful and fulfilled existence while in confinement (whatever form that may take) demonstrates strength of character. He is, I would argue, a man of courage.
This is responding to a very small part of this but I feel sure that all your friends are now googling wheelchair shapes and sizes and trying to figure out how to hug you better. Honestly looks like just a matter of intentionality and good core strength, one can’t just give any old hug and expect it to work. I don’t believe that that little part of this isn’t a tiny bit improveable.
Why *did* you only get three months of rehab rather than eleven anyway? I mean for all that it was deeply traumatising and awful, I wonder if there is anything we could collectively do about that.