Hi Paul, I just wanted to say I read your posts as they come in and they always make me think, think of you, think of what you are experiencing and your honestly and me not having the words, to respond in any meaningful or helpful way back. But todays post really made me want to say hi and I guess just to say that I hear you so you know your words aren't just going into the beyond and it sounds rubbish. Stay under the towel thats cool
“He ran because the world was divided into opposites and his side had already been chosen for him, his only choice being whether or not to play his part with heart and courage. He ran because fate had placed him in a position of responsibility and he had accepted the burden. He ran because his self-respect required it. He ran because he loved his friends and this was the only thing he could do to end the madness that was killing and maiming them.”
— Karl Marlantes, Matterhorn
Your predicament brought to mind this quote. If you are not familiar with the book, this is describing the moment the protagonist overcame his fears and left shelter to run towards the machine gun that had them pinned down.
In some ways your situation is more difficult. Your courage in facing it brings you the opposite of shame.
All I’d say is that, with time, there comes a level of pragmatic acceptance in receiving intimate personal care. I totally get that it may not seem so to you right now but there are many of us in a similar position and, incredible as it sounds and as many years as it might take, most of us get there in the end. I don’t know if you will find this reassuring or depressing to know but this ‘acceptance’ has probably taken me upwards of a decade to grudgingly achieve.
In low moments, my physical limitations will always continue to press down upon me and D (my husband) in a crushing manner – the absolute constraints, ugly realities, permanent responsibilities, the boring amounts of time it all takes. It is grinding and never ending.
I’d never go so far to say that anyone gets used to it - though maybe some do - and I am able to confirm that you are right. It is much harder to receive such care from a rotating number of different/new people with all the explaining and differences in approach and technique that each will require. I’ve done both and the unspoken language communication and loving care that I receive from my partner do make my life very much easier.
In addition to all of this, is the ‘aloneness’ of it all – not isolation, not loneliness – just being alone in your world; set apart from contemporaries in this one crucial respect.
However, grim as it is, we make the choices we are able to. We accept what we can not control with as much good grace as we can muster even when it sucks. We reset our lives. We keep looking and trying to make it better.
If not, what is the alternative? Hopeless misery or suicide? The first makes life even worse for you and everyone around you - this from the woman who spent four years going to bed every night vowing not to be the bitch from hell every morning and failing every single day - and the suicide option is actually a lot harder to do than it might seem to anyone that ever utters the moronic, and frequently heard, words: I’d kill myself if anything like that happened to me…
Cue eye-roll… better to pull up your big girl panties/big boy boxers - or get someone else to do it for you - and get on with living life as best you can, just like everybody else but with a lot more crap jokes to brighten your day.
I’m only partially dependent on carers for washing and dressing, but I can definitely empathise to a certain degree. I’ve found it helps to distract myself while these things are going on, I listen to a demanding podcast or an audio lesson in Italian, these take real concentration and transport me to a different situation and environment in my imagination. A comedy podcast might work too, it’s all a matter of trying things out. Sometimes a small change can make even the most dire situation just a tad easier to bear.
I’ve been reading your posts religiously Paul ever since I myself suffered a traumatic rock climbing accident in October of last year which, like you, has resulted in a spinal cord injury. It has devastated absolutely every aspect of my life. So I hear you- I hear the shame, embarrassment, humiliation and I feel it with you. At the very least, please understand this. No matter if anyone tries to tell you otherwise or dismiss your feelings with some inane platitude - it’s normal! It’s normal to feel shame, it’s normal to not want to carry on even when others around you want you to, it’s normal to feel resentful and angry. It’s normal to not want a room full of strangers watch you defecate. It’s normal to want autonomy and dignity. I hate how people put the ‘bravery’ and ‘courage’ sticker on our plight. We are just doing what we have to as we, unlike them, don’t have a choice. But also know this- you are not alone in your feelings and in this we can at least commiserate. I’ll continue to read your posts as they have given me some comfort in the wee hours of the night when I’m awake with anxiety and worry. They’ve given me the comfort that I’m not alone and I’m not going crazy. This just a fucked up situation that I’ve been thrown into. I hope that my words can be of some small comfort too. But I’m not going to try and dismiss and ignore your feelings with some trite comment. Feelings of shame in this context are absolutely to be expected given the circumstances. That does not mean that you should be ashamed but that your feelings of shame are understandable and normal. You deserve at least that.
I have read all of your writing voraciously, and often felt moved to comment - touched, as I was - by your sincerity and openness.
I’ve always stalled, a coward in the comment box, my own perspective seeming gauche and superficial to me.
Today I feel I have something to add, because I know shame well. And like you, my shame has no sound logical foundations: I haven’t done anything morally wrong. But I know and inhabit, often, a profound skin-crawling bodily shame.
I have found the writing of Pema Chodron very useful. She’s a Buddhist, something between a philosopher and a preacher. I’m not a Buddhist, but I have found her perspective useful when trying to reframe my own. I think you might find it interesting.
And I don’t know if you’ve read Hitchhiker’s Guide to the Galaxy, but it also features towels in a positive light, and a perversion of theory of mind (the beast of Traal - which assumes that if you can’t see it, it can’t see you).
I used to occasionally test the limits of burgeoning relationships with the opposite sex by putting on 'Prison' – a spoken word album by the poet and performance artist, Steven Jesse Bernstein. His brain was literally too large for his skull and he used to suffer from terrible seizures. This may have also been the root of his mental illness. The album was released posthumously following Bernstein's suicide. Listening to the record and its relentless battery of self-loathing and loathing of humanity in general, the circumstances of his death can surely come as no surprise to anyone. Whenever I have played it to other people, the response is invariably along the lines of 'can we have something else instead'. The longest track on the album is titled 'Face'. Against a faint ambient background drone of a factory or refinery at night, Bernstein delivers a blow by blow account of his unfortunate attitude towards his own physical appearance and the exceedingly dark turns in life that have been the result of this morbid narcissism. His sardonic humour and inward-facing contempt run very close together, to the point where they occasionally overlap and it is hard to tell how serious he is being. Regardless of where these lines are drawn, he would have undoubtedly led a happier and less turbulent life if he had found a way to reconcile with his appearance.
There is a photograph of Bernstein with the writer, William Burroughs. Burroughs believed that one could attain a kind of social invisibility by spotting people before they spotted you, thereby somehow erasing yourself from their attention. I have had a degree of success using this technique; there is obviously some kind of psychology in play. Maybe it was known to Roy Orbison, who possessed one of the most recognisable voices in pop, but who was, despite his fame, able to slip in and out of a crowded room unnoticed. Unlike Burroughs and Orbison, you are fated to remain conspicuous by your circumstances. No amount of 'mind-hacking' (or whatever the in-vogue term might be for such fuckery) is likely to change that.
In 'Face', Bernstein attempts to conceal his visage within “a red hooded sweatshirt with the drawstring on the hood pulled tight so there was just a little hole like a squinched up anal sphincter muscle for me to peer out of”. He finishes off the ensemble with a black Beatles wig, worn over the hood. It would be absurdly comedic if he wasn't also threatening to cut up his mother's face with a kitchen knife as she stands weeping in the doorway of their home's garage, where he has taken residence.
Bernstein had his hoody and you have the crook of your elbow – a dead-end fissure that you cannot even begin to enter. In both instances, nobody is fooled and the shame is largely of your own making, because there is nothing for you to be ashamed of. You survived an appalling accident. A great deal of what has happened since then has been outside of your control. You are a survivor – a warrior. That is how I perceive you. I hope that in time you will develop a more favourable impression of yourself. You will not alter your situation by living in a state of perpetual embarrassment. It remains within your power to change your perception of your circumstances to something that focuses on your positive qualities and those areas of your life where you do still retain control, which I assume is the intellectual realm.
It occurred to me, when I reached the conclusion of your post, that I have not consciously looked upon my face this year. It's not intentional; I have just been busy with other things. The only mirror I own currently has a tie dyed artwork of giraffe hanging over it. When I look at it I see a giraffe, even though I am not a giraffe.
I am testing the limits and perhaps also the patience of Berkeley's God. It must been a shock to this deity, having been conjured into a world that was henceforth to be preserved by their unyielding perception, to be almost instantly demoted from omnipotent being to thought experiment.
Thank you for your courage and honesty in sharing your experiences. I am dreading a future in which I will need increasing amounts of caregiving. I have MS not spinal cord injury and you probably already considered these, but a baclofen pump has been very helpful to me and leaves me much more alert (also colostomy and suprapubic catheter; of course, all of these come with drawbacks, but have been on balance better than not having them).
Thank you Paul - you share this shame each time you write about it. You wrestle with how to deal with it with the things that bring it along.Maybe an answer will come - in the meantime hiding is a way anything that helps you is a way. I think Terry's comments are ace by the way and he is right - you are sharing this thing. somehow you are keeping on with it and it is being listened to.
Maybe this book will help with Option 2 - The Language of Emotions by Karla McLaren. There is a newly revised edition out, also in audiobook format. She has done a great deal of work on shame.
Hi Paul, I just wanted to say I read your posts as they come in and they always make me think, think of you, think of what you are experiencing and your honestly and me not having the words, to respond in any meaningful or helpful way back. But todays post really made me want to say hi and I guess just to say that I hear you so you know your words aren't just going into the beyond and it sounds rubbish. Stay under the towel thats cool
I second this Paul! long live the towel
“He ran because the world was divided into opposites and his side had already been chosen for him, his only choice being whether or not to play his part with heart and courage. He ran because fate had placed him in a position of responsibility and he had accepted the burden. He ran because his self-respect required it. He ran because he loved his friends and this was the only thing he could do to end the madness that was killing and maiming them.”
— Karl Marlantes, Matterhorn
Your predicament brought to mind this quote. If you are not familiar with the book, this is describing the moment the protagonist overcame his fears and left shelter to run towards the machine gun that had them pinned down.
In some ways your situation is more difficult. Your courage in facing it brings you the opposite of shame.
Hi Paul,
All I’d say is that, with time, there comes a level of pragmatic acceptance in receiving intimate personal care. I totally get that it may not seem so to you right now but there are many of us in a similar position and, incredible as it sounds and as many years as it might take, most of us get there in the end. I don’t know if you will find this reassuring or depressing to know but this ‘acceptance’ has probably taken me upwards of a decade to grudgingly achieve.
In low moments, my physical limitations will always continue to press down upon me and D (my husband) in a crushing manner – the absolute constraints, ugly realities, permanent responsibilities, the boring amounts of time it all takes. It is grinding and never ending.
I’d never go so far to say that anyone gets used to it - though maybe some do - and I am able to confirm that you are right. It is much harder to receive such care from a rotating number of different/new people with all the explaining and differences in approach and technique that each will require. I’ve done both and the unspoken language communication and loving care that I receive from my partner do make my life very much easier.
In addition to all of this, is the ‘aloneness’ of it all – not isolation, not loneliness – just being alone in your world; set apart from contemporaries in this one crucial respect.
However, grim as it is, we make the choices we are able to. We accept what we can not control with as much good grace as we can muster even when it sucks. We reset our lives. We keep looking and trying to make it better.
If not, what is the alternative? Hopeless misery or suicide? The first makes life even worse for you and everyone around you - this from the woman who spent four years going to bed every night vowing not to be the bitch from hell every morning and failing every single day - and the suicide option is actually a lot harder to do than it might seem to anyone that ever utters the moronic, and frequently heard, words: I’d kill myself if anything like that happened to me…
Cue eye-roll… better to pull up your big girl panties/big boy boxers - or get someone else to do it for you - and get on with living life as best you can, just like everybody else but with a lot more crap jokes to brighten your day.
As always, terribly sorry to hear about your predicament.
Learning that hiding your face doesn't make you invisible is called developing a theory of mind. There's a lot of literature about it.
I’m only partially dependent on carers for washing and dressing, but I can definitely empathise to a certain degree. I’ve found it helps to distract myself while these things are going on, I listen to a demanding podcast or an audio lesson in Italian, these take real concentration and transport me to a different situation and environment in my imagination. A comedy podcast might work too, it’s all a matter of trying things out. Sometimes a small change can make even the most dire situation just a tad easier to bear.
If you know where your towel is, you're a hoopy frood, if not a happy one. I am sorry to hear about the interrupted progress.
I’ve been reading your posts religiously Paul ever since I myself suffered a traumatic rock climbing accident in October of last year which, like you, has resulted in a spinal cord injury. It has devastated absolutely every aspect of my life. So I hear you- I hear the shame, embarrassment, humiliation and I feel it with you. At the very least, please understand this. No matter if anyone tries to tell you otherwise or dismiss your feelings with some inane platitude - it’s normal! It’s normal to feel shame, it’s normal to not want to carry on even when others around you want you to, it’s normal to feel resentful and angry. It’s normal to not want a room full of strangers watch you defecate. It’s normal to want autonomy and dignity. I hate how people put the ‘bravery’ and ‘courage’ sticker on our plight. We are just doing what we have to as we, unlike them, don’t have a choice. But also know this- you are not alone in your feelings and in this we can at least commiserate. I’ll continue to read your posts as they have given me some comfort in the wee hours of the night when I’m awake with anxiety and worry. They’ve given me the comfort that I’m not alone and I’m not going crazy. This just a fucked up situation that I’ve been thrown into. I hope that my words can be of some small comfort too. But I’m not going to try and dismiss and ignore your feelings with some trite comment. Feelings of shame in this context are absolutely to be expected given the circumstances. That does not mean that you should be ashamed but that your feelings of shame are understandable and normal. You deserve at least that.
Thanks for these kind words. Feel free to message me directly - it could be helpful to speak climber-to-climber.
I’ve messaged you directly Paul but no pressure to respond quickly. All the best :-).
I have read all of your writing voraciously, and often felt moved to comment - touched, as I was - by your sincerity and openness.
I’ve always stalled, a coward in the comment box, my own perspective seeming gauche and superficial to me.
Today I feel I have something to add, because I know shame well. And like you, my shame has no sound logical foundations: I haven’t done anything morally wrong. But I know and inhabit, often, a profound skin-crawling bodily shame.
I have found the writing of Pema Chodron very useful. She’s a Buddhist, something between a philosopher and a preacher. I’m not a Buddhist, but I have found her perspective useful when trying to reframe my own. I think you might find it interesting.
And I don’t know if you’ve read Hitchhiker’s Guide to the Galaxy, but it also features towels in a positive light, and a perversion of theory of mind (the beast of Traal - which assumes that if you can’t see it, it can’t see you).
I used to occasionally test the limits of burgeoning relationships with the opposite sex by putting on 'Prison' – a spoken word album by the poet and performance artist, Steven Jesse Bernstein. His brain was literally too large for his skull and he used to suffer from terrible seizures. This may have also been the root of his mental illness. The album was released posthumously following Bernstein's suicide. Listening to the record and its relentless battery of self-loathing and loathing of humanity in general, the circumstances of his death can surely come as no surprise to anyone. Whenever I have played it to other people, the response is invariably along the lines of 'can we have something else instead'. The longest track on the album is titled 'Face'. Against a faint ambient background drone of a factory or refinery at night, Bernstein delivers a blow by blow account of his unfortunate attitude towards his own physical appearance and the exceedingly dark turns in life that have been the result of this morbid narcissism. His sardonic humour and inward-facing contempt run very close together, to the point where they occasionally overlap and it is hard to tell how serious he is being. Regardless of where these lines are drawn, he would have undoubtedly led a happier and less turbulent life if he had found a way to reconcile with his appearance.
There is a photograph of Bernstein with the writer, William Burroughs. Burroughs believed that one could attain a kind of social invisibility by spotting people before they spotted you, thereby somehow erasing yourself from their attention. I have had a degree of success using this technique; there is obviously some kind of psychology in play. Maybe it was known to Roy Orbison, who possessed one of the most recognisable voices in pop, but who was, despite his fame, able to slip in and out of a crowded room unnoticed. Unlike Burroughs and Orbison, you are fated to remain conspicuous by your circumstances. No amount of 'mind-hacking' (or whatever the in-vogue term might be for such fuckery) is likely to change that.
In 'Face', Bernstein attempts to conceal his visage within “a red hooded sweatshirt with the drawstring on the hood pulled tight so there was just a little hole like a squinched up anal sphincter muscle for me to peer out of”. He finishes off the ensemble with a black Beatles wig, worn over the hood. It would be absurdly comedic if he wasn't also threatening to cut up his mother's face with a kitchen knife as she stands weeping in the doorway of their home's garage, where he has taken residence.
Bernstein had his hoody and you have the crook of your elbow – a dead-end fissure that you cannot even begin to enter. In both instances, nobody is fooled and the shame is largely of your own making, because there is nothing for you to be ashamed of. You survived an appalling accident. A great deal of what has happened since then has been outside of your control. You are a survivor – a warrior. That is how I perceive you. I hope that in time you will develop a more favourable impression of yourself. You will not alter your situation by living in a state of perpetual embarrassment. It remains within your power to change your perception of your circumstances to something that focuses on your positive qualities and those areas of your life where you do still retain control, which I assume is the intellectual realm.
It occurred to me, when I reached the conclusion of your post, that I have not consciously looked upon my face this year. It's not intentional; I have just been busy with other things. The only mirror I own currently has a tie dyed artwork of giraffe hanging over it. When I look at it I see a giraffe, even though I am not a giraffe.
I am testing the limits and perhaps also the patience of Berkeley's God. It must been a shock to this deity, having been conjured into a world that was henceforth to be preserved by their unyielding perception, to be almost instantly demoted from omnipotent being to thought experiment.
Thank you for your courage and honesty in sharing your experiences. I am dreading a future in which I will need increasing amounts of caregiving. I have MS not spinal cord injury and you probably already considered these, but a baclofen pump has been very helpful to me and leaves me much more alert (also colostomy and suprapubic catheter; of course, all of these come with drawbacks, but have been on balance better than not having them).
Thank you Paul - you share this shame each time you write about it. You wrestle with how to deal with it with the things that bring it along.Maybe an answer will come - in the meantime hiding is a way anything that helps you is a way. I think Terry's comments are ace by the way and he is right - you are sharing this thing. somehow you are keeping on with it and it is being listened to.
Thank you Paul, I really like reading your posts ❤️
Maybe this book will help with Option 2 - The Language of Emotions by Karla McLaren. There is a newly revised edition out, also in audiobook format. She has done a great deal of work on shame.