Another week, another learning curve. It began with my abdominal spasms returning with a vengeance. Wednesday morning, and the contractions were hitting literally every second. Ironically, I have residual feeling (and a tiny bit of muscle control) in my abs, and so it’s not just that my body is jerking relentlessly, I can also feel it – literally the only thing that I can feel below my shoulders. And whilst it doesn’t hurt as such, every time I spasm, I can sense my core tense. It is unbelievably irritating, and very tiring.
The initial diagnosis offered was that the urinary tract infection, which seemed to have been the underlying cause of this phenomenon two weeks ago, hasn’t yet cleared. So it was back on antibiotics, and back on baclofen, the anti-spasmodic I had previously been prescribed, and had only just stopped taking. Except I wasn’t convinced. I have not shown any other signs of urinary tract infection (sediment in the urine, foul smell, fever, etc.), at any point, and so I did some digging. Along the way, I found that one thing you’re not supposed to do is abruptly stop taking baclofen. Having just done so, that might explain why my spasms were (are) both back, and so explosive.
It might seem excusable to assume that a general practitioner would know this about the risk of withdrawal, and taper me off accordingly. But actually, assumptions around doctors are dangerous for me now. Tetraplegia is a rare condition, and outside of specialist spinal units it is just not safe to assume that a doctor knows 100% what they are doing. The NHS provides medical information for free online, and I need to get into the habit of checking for myself when it comes to new medications, not simply deferring to authority. So in part, this was on me. (We will leave aside for now the fact that baclofen is widely prescribed beyond spinal cord injury, and so perhaps I do have a legitimate grievance in this particular case.)
Unfortunately, going back on the baclofen is not a straightforward solution to my problems. This is because the flipside to taking a muscle relaxing antispasmodic includes tiredness, drowsiness, and in my case in particular, brain fog. And this is a real problem, because if my brain feels like it is drenched in treacle, then I cannot read theoretical material, because I cannot concentrate long enough for it to make sense. But if I can’t read, then I can’t work. And if I can’t work, then I am completely screwed, because that is the last thing I have left in my life, and my only hope of being able to live quasi-independently on the outside world. (For what it is worth, dictating this blog is hard enough, but it is child’s play compared to some of the material I have to deal with in academic research.) So here I sit, stuck between the devil and the deep blue sea. Constant muscle spasms are unbearable and distressing, and themselves hardly conducive to concentration. But medically zombifying myself is no solution either. My best hopes are that the side-effects subside, and that in time I can wean off the pills without the spasms becoming once more unbearable. We’ll see.
Assumptions are another matter, because whilst I will have to train myself to stop making them about other people, I’ll probably just have to get used to others making them about me. And this is going to be tiring, if my experience so far is anything to go by.
One common assumption I’ve encountered is that because I need to use a wheelchair, I’m somehow especially interested in wheelchairs. Granted, I’m more interested in them than the average person, for obvious reasons. But I do not like wheelchairs. In fact, I hate them. Could you imagine a more concrete symbol of what a mess my life has become, of how utterly useless I am, of everything that I have lost in terms of freedom, exercise, and the outdoors? Yes, I am forced to care about wheelchairs, because I need one. But I’d rather not think about them beyond the absolute minimum required.
Hence, back in rehab I didn’t particularly appreciate enthusiastic discussions from visiting paraplegics about the fancy wheelchairs they had been able to buy via government assisted funding. They might care about high-tech specs and cost savings, but six months out from my injury I hadn’t yet developed any such interest – in fact, it mostly just left me feeling horrified about my new future. Similarly I, found it hard to listen to my occupational therapist get excited about what she was ordering for me in terms of wheelchairs, and the various adaptations I could think about in future. The reason she would get enthusiastic in these discussions is because she’s incredibly good at her job, and she cares. (In our occasional email correspondence, I still refer to her as Queen of Tetras, and I’m only half joking.) But personally, I really didn’t give a shit, at best, about the details of whatever wheelchair I was receiving. I trusted her to get it right, and beyond that I desired to think no more about it.
It probably doesn’t help here that I’ve never really been interested in the technical specifications of anything when it comes to mechanical transport. I’ve never once cared about cars, as many men do. Even back when I used to do a lot of road biking, the only thing I was interested in was how many miles I could ride and/or ascend. I never cared in the slightest about comparing bike specifications. (Indeed, that’s one reason I didn’t stick with road biking, and happily ditched it for climbing – tedious discussions about bikes are an integral part of the social side of that hobby.) So it’s not like I have a prior interest in stuff like cars and bikes that I can transfer to wheelchairs. And surprisingly enough, breaking my neck did not have the magical effect of imbibing me with a newfound fascination in them. I guess hopefully this eases in time; that buying a new wheelchair becomes rather like buying a new bike, something I’ll find mildly interesting and pleasurable, although I’m never going to love it. Until then, however, I’ll just have to get used to people assuming that because I need one of these damn things, I must therefore find them somehow especially interesting, or even like them.
A bit like the other day, when my standing frame finally arrived. (These things cost more than a second-hand car, and I’m supposed to use mine three times a week, minimum, to promote bone health, circulation, posture, etc. No matter that it took about four months to delivered. I am just lucky that the taxpayer, once again, picked up the bill.) Seeing me in the corridor, having finally been liberated from the cage that is my bed, one of the nurses exclaimed “your standing frame has arrived, are you excited?!” To which it took a concerted effort not to reply “oh yes, the device that sets off my torso spasms uncontrollably, often causes me to black out, and has the pleasant effect of reminding me that I used to be quite tall, but now I spend my life looking up at other people like a child. I’m positively thrilled!” Fortunately, I instead defaulted to the now well-rehearsed alternative of smiling, keeping my mouth shut, and taking advantage of being the height of a child to avoid eye contact (I do that a lot now, I’ve noticed). She wasn’t trying to be insensitive, after all, she was just making one of those assumptions – hardly the first, and she won’t be the last.
Another assumption I’ve tended to encounter, however, and that I do find it harder to ignore with a smile, is that all people in wheelchairs are basically the same. More specifically, that if two people have a spinal cord injury and can’t walk, then they are in the same boat. But this drastically underappreciates (amongst other things) just how significant the differences are between being tetraplegic and paraplegic; between breaking your neck and “only” breaking your back; between retaining your hands, and losing them. Or as an experienced tetraplegic from one of the spinal charities put it to me recently, in his estimation paraplegics are closer to non-injured people, than tetras are to paras. And yet the assumption that it’s the other way around is easily encountered, even in specialist environments.
For example, when I left rehab one of the nurses gave me a book to read. This was certainly done with good intentions, not least because she knew that I like to read. But I sort of wish she hadn’t. The book she gave to me is called Looking Up, by Tim Rushby-Smith. It is his memoir of becoming paraplegic almost 20 years ago: of his journey through rehab at Stoke Mandeville Hospital, and then back into living in the real world, as his (already pregnant) partner gives birth to their baby, and they eventually move back to their own flat, culminating in a trip to Australia 18 months after the accident that left him paralysed from the waist down. And as books go, it’s fine. It was interesting to see just how little has changed in rehab practices in the last 20 years, and I appreciated his honesty about how mentally difficult he found becoming disabled at age 36 (exactly the same age as me). It was also a useful reminder that I am very lucky not to be in daily pain, all my other problems aside. But mostly, my overwhelming response was “cry me a river, mate”. Because every struggle he describes, I can just up the ante. Find it awkward to get on and off the toilet by yourself? Try shitting in bed whilst squeezed and stimulated by two people. Frustrating at having to learn how to self-catheterise? Imagine you have to dribble piss into a bag that you can’t even empty yourself, and constantly need to ask somebody else to deal with for you. Frustrated that you find it hard to get around now that you’re in a wheelchair? At least you can go places on your own, and won’t require a professional attendant with you 24 hours a day for the rest of your life.
Which I know probably seems petty. After all, for him it undoubtedly was absolutely awful having to confront the reality of becoming paraplegic. My (greater) catastrophe does not somehow make somebody else’s (lesser) catastrophe not a catastrophe, let alone easier for them to live through. But equally, knowing that their catastrophe was really hard for them does not make it easier for me to cope with my significantly worse one. In fact, it mostly just drives home how grim my outlook remains. He ends the book on a positive, but realistic, note about the life he has left to live. Yet his realism is for me an impossible dream. Any positivity I might try and borrow is cut off accordingly.
Giving a tetraplegic the memoirs of a paraplegic, and thinking it will somehow help them, rests on the assumption that the two conditions are basically the same. But reading this book, it felt a bit like the times when I was in the rehab gym and looked up to notice that I happened to be the only tetraplegic in there. Seeing the paras practice moving independently between plinth and wheelchair, sit upright without support, grip the upper limb exercise bikes without their hands being strapped to the handles – it would quickly hit me that I was the most wrecked human being in an environment that specialises in wrecked human beings. Not a nice feeling.
A fellow tetra and I agreed that in a perfect world there would be different rehab facilities for tetraplegics and paraplegics. Of course, we recognised that this was never going to happen – but we both wished it might. More realistically, perhaps over time more people (and especially those who work with spinal patients) might become aware that just because two people are in wheelchairs, the gritty realities of their underlying disabilities likely make their lives radically different in other, more important, ways. (And that is true just for people with spinal cord injury, let alone the vast differences faced by people in wheelchairs for completely different reasons.)
I am not especially optimistic on this score. Assumptions are hard to shift, and most people will not encounter reasons to rethink theirs. But if I can make some tiny contribution in this direction, then hopefully that is something. At the very least, here’s a request: if you happen to know somebody who is newly tetraplegic, then please avoid sending them news articles, books, films, and so on, about inspirational paraplegics. I know you would only be trying to make them feel better, but if they are anything like me, you’re just going to make them feel worse. Losing your legs is bad enough. But losing your hands as well is a whole other circle of hell.
Reading this Substack has certainly challenged my assumptions in regard to what it means to be tetraplegic, in the process significantly expanding my knowledge. I am sorry that this uncharacteristic, and relatively late in the day, spurt of personal growth on my part has come at great expense on your part. In terms of near-full-body paralysis, I never thought about what that would mean beyond not being able to move one's limbs. I never took the time to consider the other myriad ways that the body would be affected. I believe that it was here that I first read about the possibility of ejaculating in retrograde – not in the brain-nourishing sense that was once espoused to me by a tantric adept who also claimed to be able to lift heavy weights with his penis – as if any man's dick doesn't possess sufficient musculature to throw off the weight of his own common sense.
Prior to being diagnosed with Primary Sclerosing Cholangitis, my liver functions were way out of whack. I was placed on Prednisolone – a steroid – in the hope that this would calm everything down, which it did. Along with the tablets, I was also given a card stating that I was on Prednisolone and that it would be extremely detrimental to my health if I were to suddenly stop taking it. When I asked who I was supposed to show the card to, my consultant, who evidently had very low expectations of me, suggested that I might show it to the police if I was arrested.
After I ran out of Prednisolone, I ordered a repeat prescription from my GP, and then another. Eventually I had a meeting with my consultant. When I asked him when I would be coming off the steroids, he was rather alarmed and told me I should have stopped weeks ago. Apparently I was only supposed to have taken them for the duration of the first prescription, but nobody had bothered to communicate this to me. He said that I should cease taking the tablets immediately, which I did without any tapering off. That evening, I began to feel very unwell. My blood pressure dropped, my joints ached, my stomach hurt. This was followed by vomiting and diarrhoea. It was dreadful, but also strangely familiar. It took me a while to remember why:
After my grandmother died I was extremely distraught; barely capable of holding myself together. I decided that the best way for me to process my raw grief would be to work my way through a copious supply of strong painkillers that she had left behind. It was a very strange time. I was in the best shape of my life, getting up early, swimming three miles everyday, but I was also on my way to becoming a junky, as well as being degenerate in other areas that I won't go into here. Just under a month later, the painkillers ran out. I experienced a couple of difficult days of withdrawal. On the third day, I felt as though I was over the worst. On the fourth day, I returned to the pool.
That's how I went cold turkey on steroids, as a result of a consultant not being on the ball in regard to communicating how to take the drug in the first place and how to safely come off it. I reached the same conclusions you have: Always do your own research.
Regarding the assumptions made by the medical profession, at a recent appointment with my consultant, it occurred to me that there is a significant discrepancy between the way that Primary Sclerosing Cholangitis is understood in these circles (I have read quite a lot of the medical literature on the subject) and the disease as it is actually experienced, where there is a much broader pool of common symptoms and obvious co-morbidities. It is terribly frustrating. I think improvements could be made simply by listening to sufferers, thinking about what they said, and then implementing sensible treatment pathways. That is probably true of many other conditions, and it is certainly true in your case.
In the wider world, it is morbidly interesting to watch someone who your have just informed about your liver disease, jump to the obvious conclusion and attempt to gauge, with varying levels of tact, whether you had/still have a drink problem, which I never did. Since my diagnosis in 2007, I have consumed a grand total of three alcoholic drinks, one in a flat roof pub where I asked for a coke and was presented with a pint, and two cocktails at a party hosted by Milo Yiannopoulos back when he was still flamboyantly gay. He has since renounced homosexuality and become ultra-Christian. Up until a few days ago he was working as a publicist for Kanye West in the rapper's on/off campaign to become president. The last photo I saw of him (Yiannopoulos, not West) he resembled the kind of individual who might approach you in a Florida branch of Denny's and attempt to sell you the deeds to a second-hand airboat.
I get brains fog more than I used to; a symptom of the liver in decline. I've done some good automatic writing, but that's of no use if your interests run to cogent, logic-based dissections of reality. I have been casually looking for alternative remedies – yoga or meditation – without any success so far. At its worst I have felt as though my entire being was on the tip of my own tongue.
I think barely, therefore I barely exist.
Your words already help us to avoid those assumptions and I hope you can reach a wide enough audience for things to change in a real way that helps.