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.
"But if I can’t read, then I can’t work." Yup get this.
On a related note, I think Ed was going to pass on my draft article on reading The Man Who Shot Liberty Valance with Bernard Williams, if so and it ever comes up on your reading list, I hope you enjoy it (comments welcome but certainly not expected)- and it provides an excuse to watch the film (again?). I hope you are able to engage with cinema? I haven't see you mention it in your blogs so not sure.
Edward was supposed to write to you and tell you how much I enjoyed your paper, and have nothing further to add. He probably got distracted raising his kids or something.
Kids will do that. Very glad you enjoyed it, since as you know I very much respect your opinion on all matters Williams (and much else). So thanks, I appreciate this.
I had always assumed (aha! there it is) that the 'inspirational memoir', as a genre of book / TV show / news broadcast / etc., is largely by and for non-disabled people. So I'm quite surprised to hear of a nurse handing you an inspirational memoir of *any* kind, never mind the fact that it was a memoir by a paraplegic.
Is there a distinction between the inspirational memoirs written to 'give hope' to disabled readers, and those written for the general public? Because from my admittedly limited experience of the genre, and my admittedly imperfect attempts to empathise with what it must be like to be made disabled, I think I might feel frustrated or even patronised to if someone gave me something very saccharine and sentimental to work through genuine feelings of dejectedness or worse. But if there are two different markets here, that would be interesting.
Yes, I have the title for a blog post, although not yet the blog post: "I am not your inspirospaz".
As you suggest, I'm pretty sure there are at least two different genres here. whether there are two different markets is an interesting question for me, because if there is only one (or rather, if the other is fantastically small) then the many people telling me this blog should become a book are going to be disappointed, because it seems unlikely any publisher is going to put it into print.
Luckily for me, I don't really care. As I'm genuinely bemused why anybody else even reads this thing, it doesn't surprise me in the least to know (and actually, on this score I do) that publishers rarely give out contracts to people who have become disabled unless those people already have considerable name recognition (and want to be inspirospaz). Which is fine, as mentioned over at your place earlier, exercise for the brain et cetera
Just read free sample of first two chapters. Will definitely read the rest when I’ve made it through the final 400 pages of my trilogy about dragons that talk to boats
Think I’ll have a re-read since that’s put the idea in my head. Funnily enough apart from this trilogy I never feel like rereading the others, although I really enjoyed them.
I really enjoyed the Royal Assassin trilogy a few years ago, even though I think it went a bit off the rails towards the end. Pre-accident I had this mad idea to read all 16 books set in that world, but I think it's a bit doubtful I'll do it now given what a basic slog reading sometimes now is
Yeah I think it’s the danger with epic fantasy that it can disappear within its own navel. They did go off on one a bit. But the liveship ones kind of stand apart. Do you get on ok with audiobooks?
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.
Someone needs to write the tetraplegic version of the book
"But if I can’t read, then I can’t work." Yup get this.
On a related note, I think Ed was going to pass on my draft article on reading The Man Who Shot Liberty Valance with Bernard Williams, if so and it ever comes up on your reading list, I hope you enjoy it (comments welcome but certainly not expected)- and it provides an excuse to watch the film (again?). I hope you are able to engage with cinema? I haven't see you mention it in your blogs so not sure.
Edward was supposed to write to you and tell you how much I enjoyed your paper, and have nothing further to add. He probably got distracted raising his kids or something.
Kids will do that. Very glad you enjoyed it, since as you know I very much respect your opinion on all matters Williams (and much else). So thanks, I appreciate this.
I had always assumed (aha! there it is) that the 'inspirational memoir', as a genre of book / TV show / news broadcast / etc., is largely by and for non-disabled people. So I'm quite surprised to hear of a nurse handing you an inspirational memoir of *any* kind, never mind the fact that it was a memoir by a paraplegic.
Is there a distinction between the inspirational memoirs written to 'give hope' to disabled readers, and those written for the general public? Because from my admittedly limited experience of the genre, and my admittedly imperfect attempts to empathise with what it must be like to be made disabled, I think I might feel frustrated or even patronised to if someone gave me something very saccharine and sentimental to work through genuine feelings of dejectedness or worse. But if there are two different markets here, that would be interesting.
Yes, I have the title for a blog post, although not yet the blog post: "I am not your inspirospaz".
As you suggest, I'm pretty sure there are at least two different genres here. whether there are two different markets is an interesting question for me, because if there is only one (or rather, if the other is fantastically small) then the many people telling me this blog should become a book are going to be disappointed, because it seems unlikely any publisher is going to put it into print.
Luckily for me, I don't really care. As I'm genuinely bemused why anybody else even reads this thing, it doesn't surprise me in the least to know (and actually, on this score I do) that publishers rarely give out contracts to people who have become disabled unless those people already have considerable name recognition (and want to be inspirospaz). Which is fine, as mentioned over at your place earlier, exercise for the brain et cetera
I've nothing to say today about the grim reality you are in Paul.
I hear you. 💚
Just read free sample of first two chapters. Will definitely read the rest when I’ve made it through the final 400 pages of my trilogy about dragons that talk to boats
Are you reading the Liveship Traders trilogy or are there others?!
Let's just say I wish I lived in the Rain Wilds
Think I’ll have a re-read since that’s put the idea in my head. Funnily enough apart from this trilogy I never feel like rereading the others, although I really enjoyed them.
I really enjoyed the Royal Assassin trilogy a few years ago, even though I think it went a bit off the rails towards the end. Pre-accident I had this mad idea to read all 16 books set in that world, but I think it's a bit doubtful I'll do it now given what a basic slog reading sometimes now is
Yeah I think it’s the danger with epic fantasy that it can disappear within its own navel. They did go off on one a bit. But the liveship ones kind of stand apart. Do you get on ok with audiobooks?
I have tried again over the past year, but same problem as before: I just stop paying attention, lose a thread of the story, and give up