You would think that after five months of being paralysed from the chest down (six if you include time spent unconscious), then I would have heard all the bad news already. But it turns out that breaking your neck is the gift that keeps on giving.
This week’s latest revelation is that my sympathetic nervous system no longer functions. I found this out because I expressed frustration to my physio team that I never seem to get any payoff in terms of improved mood or mental release following exercise sessions. I had assumed this was just because I can currently do so little physically that I am not yet able to stimulate a post exercise sense of satisfaction, despite always trying my hardest. But it turns out it’s much worse than that.
Essentially, the body’s fight or flight response connects to the spinal cord at the top of the back (the thoracic section of the spine). I however broke my neck (the cervical section). This means signals from lower down my body cannot communicate with my brain. In particular, the feeling of having worked out hard, and getting what is popularly referred to as an endorphin rush, no longer operates for me. It is not just that I cannot sweat below my level of injury, it is that I cannot get the satisfaction of trying hard even with those parts of my body that do still remain.
This is a doubly devastating revelation. In the first place, because I really loved exercising prior to my accident. It’s true that I’ve always deeply enjoyed reading and thinking - but physicality was also always a hugely important part of my life, indeed of my sense of identity. Now it seems that exercise as a source of satisfaction, and of conceiving of who I am, has also been taken away, along with so much else. Not only has climbing, the sport I loved, gone forever, but anything I now try and replace it with will have to be based on the theoretical knowledge that it is good for me, rather than any inherent satisfaction derived from actually doing it.
Perhaps even harder to come to terms with is the realisation that I’ve now also lost a major tool, one that I relied on for years, in my battles with depression. For decades, physical exercise has been a go-to and reliable method of boosting my mood. After all, exercise is a well-known and clinically proven factor in contributing to improved mental health. Yet I now face trying to cope with possibly the worst thing that could ever have happened to me, whilst being deprived of one of the most reliable strategies I previously had for managing significantly less severe situations than this one.
All of which serves to confirm a realisation I’ve had in the wake of my accident: that outside the small number of people who have been directly affected by spinal cord injury (either to themselves, or close friends or family) it is drastically misunderstood by the population at large. In essence, because what everybody concentrates on is not being able to walk. Consider, for example, literally any newspaper headline about breakthroughs in treatments for paralysis. I guarantee you that they will gush about how a person with a broken spine has managed to walk again. But from my perspective at least, not being able to walk doesn’t even make the top five of most devastating consequences that result from this injury. Things like loss of bowel and bladder control, having to rely on other people to dispose of one’s biological waste, total loss of genital sensation, inability to regulate temperature, autonomic dysreflexia, the constant threat of pressure sores, and, yes, the loss of exercise satisfaction, vastly outrank merely not being able to walk. (Admittedly this is all worse for tetraplegics than paraplegics - but then you can just add being jealous of paraplegics to the list of things that are worse than not being able to walk.)
Then again, at least I still have my friends. Last night two of my oldest ones, that I’ve known for more than twenty years, made the trek out here to see me in rehab. We ordered pizza, drank illicit mulled wine that they smuggled over, and watched Arsenal lose to Villa, happily keeping Liverpool top of the league. They reminded me that I won’t always be in rehab, confined to the same 50 square meter enclosure. They encouraged me to think ahead to future days when I will be able to do more for myself, in ways that I can’t imagine now, when regular socialisation will be a normal thing rather than a special treat. They also pointed out that the apparently endless revelations about my condition simply do have to end eventually. Just by being there, talking to me like they always have, they helped dispel my nagging fear that no one will want to be my friend for much longer because I am now incapable of contributing anything other than tales of woe and self-pity.
They are by no means the only ones who have supported me in recent times. More than a few have watched me break down, sat with me whilst I recovered, before leaving me in better spirits – and then been back to see me since. Even more have continued to reach out across the considerable distances that sometimes separate us, via email and text.
I have struggled since the start of this ordeal to believe that it is worth carrying on with. In many ways, I still don’t believe that it is. A life trapped in my own body feels like a fate worse than death. The raft I somehow still cling to is the one that friends keep repairing for me, making sure I stay afloat instead of simply giving up and sinking into the depths.
It is still an open question as to whether I ever make it back to shore or not. The last few weeks have genuinely been touch and go. But if I don’t make it, the responsibility will rest entirely with me. Those who tried did all they could, and they did a lot. I am grateful, and they should be proud.
These are delicate issues that need to be addressed candidly. Anything else will amount to condescension. I can at least spare you that indignity.
I have mentioned this before: I have Primary Sclerosing Cholangitis which is a progressive and barely-treatable disease that affects the bile ducts both within and outside of the liver. Ultimately it resolves itself either in liver failure, or in one of a handful of aggressive forms of cancer. If the experiences of some of my late friends are anything to go by, then mass organ failure also appears to be a possibility.
If I relied upon my consultant (who is a decent chap – no complaints at all, however there is a limit to what can be conveyed in a ten-minute appointment) or the medical journal articles that I used to read, before I began to question the value of knowing various permutations of Latin medicalise for 'you are categorically fucked,' then I would have a very poor understanding of my condition.
For years I didn't know the origin of the violent shaking fits that would send anything that I happened to be holding flying out of my hand and across the room. I eventually learned the cause of this from talking to a fellow sufferer. Sometimes it feels like everyone who has the disease is holding a different piece of a jigsaw that, if it was assembled, might provide us all with a broader understanding of what we are facing.
Continuing this ridiculous metaphor, now I am committed to it, the people who are in charge of designing the box, that will incorporate an image of what the completed puzzle is supposed to look like, have barely spoken to the people who are holding the jigsaw pieces. I suspect that significant improvements in the treatment, and in the overall quality of life, of people with chronic illnesses or disabilities could be made if those who worked in care and research took some time to talk with sufferers, and then reflect upon what they have been told.
The other matter is a personal one. When I first learned that I had PSC, I found a few people who had been diagnosed around the same time, with whom I shared more than just a common ailment. They were people who I felt I could have been friends with had we met under different circumstances. They are all dead now. On the 20th December, my friend Cat will have been gone ten years. I am not handling the anniversary well. God knows what I will be like on the day.
I know how these people died. It was unnecessarily long and it was not pleasant. It would be foolish to think that my death will be any different. I suppose one of the advantages of being the last is that I know where my personal Rubicon is. Unlike Caesar, I will not be crossing it. I have a living will that, if it is respected, will act as a guide to my treatment, if I am unable to make decisions myself. Everyone should have a living will.
Weighty decisions like this need to made with clarity and with as full a possession of the facts as is possible. Currently, your life is in a state of profound upheaval. You are in mourning, and still incline towards, old pleasures and ways of alleviating frustration that are inaccessible to you. Those were never the only ways of living, even when you were fully-abled. When things become more settled, new pathways and possibilities may present themselves.
You have documented well the paucity of mental healthcare on the NHS, which has been long neglected by governments of both stripes. Your psychological needs must be addressed as a matter of urgency. When it comes to someone who, through adverse circumstances, now predominantly lives the life of the mind, the health of the mind should be regarded as foundational in their treatment. That's just common sense.
You are so clever Paul and your writing carries this forward - what is it though for me, when I got to the end of such a dispiriting and new episode in your life in rehab - that started with the new story (cannot get the buzz) but seemed for a moment to transcend it with the support of really good friends. but then, the suicide notes surfaced - or at least they did for me. You spend time saying it won't be anyone's fault if you die. This is my take on your news this week. Actually now we are here - I'm going to expand on that. Have you thought about - firstly that in anyone's life, change goes on, and we eventually have to admit that old ways of dealing with stuff could perhaps make way for new ones? Yes, your life has dramatically stated this. Despite the gravity, the utter pits of your state, there will be other such ways to deal with your depression for instance. You know now that physical activity as you knew it, is not one - but is that even true? take away the limits as much as you can - make your expectations realistic - reshape your world. Secondly - and this I do want you to hear. I am currently seeing a mental health practitioner at my GP practice - this step alone was a big one - I am a total snob about all of that ie who knows better than me - anyway suffice to say she asked me like all good mental health people do, had I thought of or attempted suicide. Well Paul like all the awful stuff in my life, it gets ironed out you carry it on you forget too how bloody awful it was or is, and you trot out your answer - but she really was listening to me. so we did discuss it. The point to this long story is, I have lived with the suicide thoughts and ending my life, all my life. It's like a friend now walking along side me. I will not end my life, that is a fact - but the thought is always going to be there - I do get your back up plan. and no amount of how wonderful life is going to change it. It is there. but just consider it will always be there and treat it like you would your climbing - you are not going to do it. I cannot help myself in reaching out to you about this - don't think you will mind. but do begin to think of other ways out - there will be ways. I have the film mamma mia on in the background which is relentlessly happy - the main reason I never watched it - but I'm going to get over myself this time. With much care and thoughts from the tiny village in North Yorkshire, Seamer, Maddi