During my time in the spinal unit, I was psychologically very unwell. I was not just sad, or struggling, or down; I was quite seriously mentally ill. Most of this story is not happy. It’s far beyond that; it’s undignified, horrible, gruelling. It’s disgusting. In times like that, in psychological conditions like that, the elements that constitute your person; your brain, your sense of self, your self-worth, all of you, are just melting away. If you keep reading and I do a good enough job representing my past you may begin to understand where I’m coming from; just know that you’re seeing the story through the eyes of a man who was not well-adjusted at the time.

I had one problem with continuing the blog. There is an argument to be made that this particular epoch, the period after the initial cataclysm, the time of brute realisation, realisation that the dissolution and effacement of my life as I had known and planned it was not only permanent, but complete; when I was face-to-face with that all-encompassing and savage apocalypse, a loss that feels like death and robbery; loss that is both so horrible and foreign and impossible and yet had been lurking and waiting for me on a quiet side street on a February evening- there is an argument that this time was always going to be awful. That it was so bad even perfect treatment would not have protected me from losing my mind, that my feelings at the time was always going to negatively colour my reflections on that place; that I’m looking back wearing sepia tinted glasses, that I could not recognise and engage with the help I was being offered rather than it not existing at all; that I’m not being fair. I mean, it’s possible. Do I think I have projected some of my suppressed rage onto that place and that time? It’s very likely. Is the spinal unit totemic of my own misery and failure? Probably. Does that taint my recollection with negative bias? I guess you can judge for yourself, but I will never really know. Take this for what it is: a story by one man and one place for six months in 2018.

As a result, when preparing to write about that time I found myself in a moral quandary; I didn’t want to dissuade other spinally injured people from going to a specialist centre just because of my experiences; after all, there are many spinal units throughout the country with many patients in them and I am only one man with one story. I am not representative of anything other than myself. But the statistics are clear: patients have better outcomes if they spend time at a spinal-cord injury centre (SCIC). Furthermore, there is a current crisis whereby the majority of spinal-cord injuries never have an opportunity to attend an SCIC due to bed pressures and availability. I may well be overstating the impact me writing words on the Internet might have, but I would hate to deter people at such a crucial time in their rehabilitation. So, I began considering avoiding the topic altogether, or sanitising the story in such a way to make it more palatable, with both options holding so little appeal that I, lacking the conviction to tell the story as it was, have let the affair lapse into the past. It was only when approached by several people who had read my other work and found it helpful, then discussed with me their own negative experiences of other units, their stories eerily similar to my own in an uncomfortable number of ways, that I realised it was important to tell it as it was; if not for me, then for people like them, who are living it now, who don’t have the luxury of many months of separation from the experience, and even more importantly for those in the future who need to know they are not alone, going mad in a world that is failing them. It was also with some dismay that I realised that my experience in Sheffield was not uncommon, that there were others, maybe many others, who were encountering disturbingly similar unsupportive environments at a time when a person is not really hoping, or coping; just existing.

So here is one example of many: the title photo, which I had taken several months into my stay at the unit. Context: the building comprising the spinal unit, which in turn is comprised of four wards; Osborne 1 through 4 (and is also known as the Osborne Unit) rests in what can only be described as a hole in the ground on the Northern General Hospital campus. As such, the only way out of the unit was to go up a steep hill, either on a poorly maintained pavement or, if you’ve reached the point in your stay where you really don’t give a shit anymore (often a surprisingly short period of time), the middle of the road. Now, for the average functional lower limb operating individual this would be a mild inconvenience, however for the 500,000 kg NHS wheelchair user (which is essentially the entire population of the unit) it’s a gargantuan task. But why would anyone design specialist facility this way? I hear you cry. Honestly, my best guess is that either they were trying to prevent unwanted escapes, or no one thought about it. But wait. Maybe somebody did think about it! There’s a whole second story on the building which conveniently is at one edge of the crater the building is nestled in, potentially allowing trapped wheelers to skip the death hill entirely. Incredible, you cheer, the problem is solved! And wouldn’t you know it; if you were happy to sneak out of the canteen fire escape (usually requiring someone to hold it open for you as heavy doors and wheelchairs are a bad mix) you can flee the unit with relative ease. You are then greeted with this sign. No disabled access to a place whose entire purpose is to rehabilitate very disabled people. What kind of schizoid healthcare fever dream is this place? You mutter, confused. Well, I guess you’ll find out.

This is not to say that all spinal centres in the UK are centres of all evil, perhaps built on ancient tribal burial grounds or radioactive waste, staffed exclusively by morons hellbent on leeching all positive constituents of humanity from each patient and feeding them to some Lovecraftian horror that lives in the basement: I met some incredibly talented, caring and dedicated staff in Sheffield, tragically let down by an under resourced and culturally bankrupt work environment, desperately trying to do their best; but I’d be lying if they weren’t often outnumbered by morons and I’d also be lying if, on the bad days, it didn’t feel like the centre of all evil too. I also never went in the basement (it’s probably not wheelchair accessible) and so can’t confirm if there is a soul eating monster down there or not, but a part of me wouldn’t be surprised. It would definitely explain some things.

I also struggled (and still do, from time to time) with a pernicious and pervasive guilt regarding what happened to me. I thought it was my fault. I lost faith in the fairness of life and I lost faith in myself. I lost confidence, I lost my conviction, and it has taken a long time and a lot of work to get it back.

This blog could end up reading like a vengeful hit piece, fuelled by the anger of a self-righteous ex-patient with inflated expectations. I really hope it doesn’t. I mean, I’ve been a clinician: I know what a difficult patient looks like, I know that many people reflect the misery and anguish regarding their own health back at those trying to help them. But I think this story, my story, encapsulates something else. When you’re in the aftermath of something catastrophic, your shellshocked. You can be shellshocked for a long time. I often see this look, the eyes behind the eyes, the subterranean mental turmoil, when I go and speak to people who have had injuries like mine. I remember seeing a patient when I was a doctor, shortly before my injury; I was working in upper GI surgery one Tuesday morning in January 2018 and we had a patient in his early 20s. He had oesophageal cancer. It was a shock diagnosis; he did not drink excessively or smoke; two of the most significant risk factors for the condition. There was no family history. He had just had trouble swallowing for the past few weeks. Now he would need extensive and high risk surgery that could potentially save his life or prematurely end it. I had not met him before and needed to take some blood ahead of his operation; I went through my usual introduction, made some small talk, got the job done and continued with my day. I’m ashamed to say I didn’t think about him or realise anything insightful about the moment we met until many months later, after 44 days on a ventilator, after the tears, after I lost my life. I remembered the way he looked at me. It’s a look at somewhere between the smouldering rage of fuck you, you entitled prick with no cancer and no idea, and I am lost. Help me. I wish I’d taken five minutes to talk to him, although I’m not sure what I would have said. Perhaps health professionals need more training with how to handle patients who are so psychologically distressed, or maybe it’s enough to know that you can’t handle them. They are in a different universe and you just have to do what you can.

When you’re imprisoned by misfortune, everyone you see looks like your jailer.

I have since returned to the spinal unit for various outpatient procedures and it looks, and more importantly feels, so different. Staff that I remember from two years ago go out of their way to find me and say hello and see how I’m doing. They remember me positively, and I do them. They are so pleased to see the life that I live now; I feel like a human being in a hospital when I’m there, not like a rat in a cage. Even though the curtains are the same weird yellow colour and the building is still practically a bunker, it all seems brighter now; less oppressive and tragic. There are not just two sides to this story, me and the unit; there’s each of those members of staff, my friends, my family, Izzy, and a traveller called Kevin* who got run over by a van in a drug deal gone wrong. You’ll hear about him later.

*Not his real name

With all of that said, the future blog posts and my retelling of 2018 should hopefully read less like a psychotic break with bitter undertones and more like some guy trying to keep it together. I’ll try and finish the next one in less than three months, sorry!

Ed