I have been laughing in absolute empathy, reading this out loud to my husband. You write with an amazing degree of honesty and clarity. I am sure any of us living not-dissimilar lifestyles will appreciate both the sardonic wit and bravery you display in describing your own experiences of a, mostly very unwillingly led, life that is fully dependent on others for existence. Bravo. I discovered your Substack a few weeks ago and look forward to your weekly missives.
For info: I became neurologically paralysed - went from normal life to total dependency within a few months - just over 25 years ago from the chest down and experience regular relapses/remissions that have included loss of vision, hearing, use of my arms and/or hands. I am a permanently non-standing power wheelchair user who has spent months (maybe even years) in hospitals, undergoing treatments &, basically, just being ill. I am so familiar with similar - to yours and so many others of us - emotional responses and motor function realities that, 25 years along, my own responses generally include helpless laughter as indignity upon indignity has been, and continues to be, heaped upon me.
So, my laughter is all in empathy and, in that spirit, I so appreciate your words. I cannot offer reassurances from my own experience that particularly soothe in terms of the future but it is probable that, as you may already feel, you will get used to the practical realities. I am sure that you will find practical solutions to various of the most troubling elements of your life as, one way or the other, we mostly do. Even the psychological stresses can, to some degree, be parked - I think of shoving my depressive ruminations into a box, slamming the lid on and ignoring them for the most part. This does create a weird dissonance in my life but it works for me even though the lid does occasionally fly off. Oops, pity my poor husband.
However, I can honestly say that, for me, it took some years before I was able to even talk about most of this stuff & the search for practical solutions to deal with living a dependent life never ends. Anyone who imagines that you or they ‘should’ be fine in some months - after such a monumental life-changing event in which your own control over your life is ceded to others for ever - is, in my opinion, crazy.
So, if I have any advice - and, really, whoever listens to others in these situations - it would be take deep breaths, practice patience and be kind to yourself. What’s happened to you is crap (not meant in the literal sense) and it never won’t be but it, or similar, has and will continue to happen to others as well. Over time, most of us find a way to live a very different life. Incredibly, to me, some say they wouldn’t go back to what they were. I’ve never got to that point but I live a good life, an enjoyable one, which isn’t as bleak as I’d imagined. It’s better than death, I think.
I hope you give yourself the time to create a better life than the one you are living right now - early stages for you by my standards - and, at some point, will be able to look back and think, “Ok, not what I expected my life to be but worth living and way better than death.”
I wish you success and look forward to future columns … and hope you are able to join me in laughter at the complete shitshow of the life in which we find ourselves. Lynda (my nickname is L).
I spoke with a man from Tanzania who claimed to have been tortured by the Ugandan military. He wasn't tortured for information. He was tortured for entertainment, as an end in itself.
I asked him how he was able to survive the ordeal.
He told me that the sounds that came out of his mouth were so inhuman, he couldn't believe that he was the one who was making them. It was not him, but somebody else; another man.
We were in a cafe bar on the fringes of Asmara. An Italian colonial-era building with an antique billiard table.
He was a Christian and very religious. When we knew each other a little better, I asked him: 'Who created God?'
He replied that there were some questions we should not ask. We should be humble and learn to accept the universe as it is.
He was the first person I thought of, when you shifted your focus onto your inadvertent tormentor, the Baying Man; him and the final verse of Third World Man which closes the Steely Dan album Gaucho, heralding a two-decade studio hiatus for the group:
“When he's crying out
I just sing that Ghana Rondo
E l'era del terzo mondo [it is the age of the third world]
He's a third world man”
Is there some combination of words that could be whispered into the ear of this brain damaged individual that would quieten his distress; perhaps a strain of music more potent than Michael Jackson. Wouldn't it be awful if that turned out to be Toploader?
When you re-enter the world, fully engaging with it to whatever extent is possible is going to require mountains of courage and not in short bursts either, but on demand, in order to cope with the reality of your condition, the challenges that it presents, and also to weather the callousness of strangers with dignity and resilience. In difficult situations I try to first establish my area of influence – the things that I can control which is where the focus needs to be expended. I think that laying a strong psychological foundation that will enable to withstand whatever difficulties lie ahead of you should be a priority, as it is in the area where there is most potential for improvement. Your body has failed. Your mind, which is certainly above average, needs to step up and learn some new techniques. You need people around you with whom you can be honest and who are able to bear the weight of that honesty.
I hope that my friends would feel comfortable letting me know if they had shit themselves.
I would tell them: It was your problem. Now it is our problem. We will address it together.
Derek Jarman wrote about shitting himself in public in his journals. It was the early days of AIDS and the medication was blitzkrieg-level. The one I remember was Jarman is in the elevator of his building with his young companion HB, and is caught short. He has no choice but to pull down his pants and shit in the lift. He's totally unashamed both in the doing of it and in the writing about it. Jarman's journals are well worth reading, they are published by Penguin under the title Modern Nature.
Things will improve greatly when you’re finally in your own home:
(1) no baying! Peace!
(2) no visiting hours :)
(3) fewer random strangers involved in your care
(4) food of your preference
(5) more control
(6) a schedule that better meets your specific needs (rather than the nursing home’s)
(7) no daft and arbitrary rules
(8) a home office/IT setup that means you can work the way you want and need to
Getting out will come with its own challenges of course, and some things probably won’t be quite the way you want them to begin with, but these problems can and will be resolved.
Most importantly, the institutionalisation and compromises you have been forced to accept will be over.
I simultaneously look forward to and dread reading your posts. They are filled with such honesty and such a raw version of what it means to be alive and what it means to live - two very different states that I now understand thanks to you. I find myself reading and thinking about what it is like for you whilst also thinking about life in general. You open up a whole world. I never know what to write to you as I feel that nothing will really help. But perhaps knowing that I hold you in my thoughts each day and send you much love may give you a second of warmth. I don't think there's much else I can do.
So happy to hear that you’re beginning to see the new life ahead of you when you’re able to leave nursing home! Enormous challenges lie ahead, but your strength shines through so brightly in these post that I have no doubt you’ll succeed.
Oh, I so hope that you will soon be released from the setting in which you find so much pain and unhappiness! I know that new challenges will then await you even then, but perhaps you can find a greater measure of the autonomy you crave and deserve.
Still listening and caring from another continent . . .
So, it’s Saturday and I’m thinking, “I wonder how Paul’s week has been?” I’m always hoping there has been hints of sunshine for you through the many dark clouds. Hopefully you will post today and update all of us that follow you and willing you on from the sidelines.
I have been laughing in absolute empathy, reading this out loud to my husband. You write with an amazing degree of honesty and clarity. I am sure any of us living not-dissimilar lifestyles will appreciate both the sardonic wit and bravery you display in describing your own experiences of a, mostly very unwillingly led, life that is fully dependent on others for existence. Bravo. I discovered your Substack a few weeks ago and look forward to your weekly missives.
For info: I became neurologically paralysed - went from normal life to total dependency within a few months - just over 25 years ago from the chest down and experience regular relapses/remissions that have included loss of vision, hearing, use of my arms and/or hands. I am a permanently non-standing power wheelchair user who has spent months (maybe even years) in hospitals, undergoing treatments &, basically, just being ill. I am so familiar with similar - to yours and so many others of us - emotional responses and motor function realities that, 25 years along, my own responses generally include helpless laughter as indignity upon indignity has been, and continues to be, heaped upon me.
So, my laughter is all in empathy and, in that spirit, I so appreciate your words. I cannot offer reassurances from my own experience that particularly soothe in terms of the future but it is probable that, as you may already feel, you will get used to the practical realities. I am sure that you will find practical solutions to various of the most troubling elements of your life as, one way or the other, we mostly do. Even the psychological stresses can, to some degree, be parked - I think of shoving my depressive ruminations into a box, slamming the lid on and ignoring them for the most part. This does create a weird dissonance in my life but it works for me even though the lid does occasionally fly off. Oops, pity my poor husband.
However, I can honestly say that, for me, it took some years before I was able to even talk about most of this stuff & the search for practical solutions to deal with living a dependent life never ends. Anyone who imagines that you or they ‘should’ be fine in some months - after such a monumental life-changing event in which your own control over your life is ceded to others for ever - is, in my opinion, crazy.
So, if I have any advice - and, really, whoever listens to others in these situations - it would be take deep breaths, practice patience and be kind to yourself. What’s happened to you is crap (not meant in the literal sense) and it never won’t be but it, or similar, has and will continue to happen to others as well. Over time, most of us find a way to live a very different life. Incredibly, to me, some say they wouldn’t go back to what they were. I’ve never got to that point but I live a good life, an enjoyable one, which isn’t as bleak as I’d imagined. It’s better than death, I think.
I hope you give yourself the time to create a better life than the one you are living right now - early stages for you by my standards - and, at some point, will be able to look back and think, “Ok, not what I expected my life to be but worth living and way better than death.”
I wish you success and look forward to future columns … and hope you are able to join me in laughter at the complete shitshow of the life in which we find ourselves. Lynda (my nickname is L).
I spoke with a man from Tanzania who claimed to have been tortured by the Ugandan military. He wasn't tortured for information. He was tortured for entertainment, as an end in itself.
I asked him how he was able to survive the ordeal.
He told me that the sounds that came out of his mouth were so inhuman, he couldn't believe that he was the one who was making them. It was not him, but somebody else; another man.
We were in a cafe bar on the fringes of Asmara. An Italian colonial-era building with an antique billiard table.
He was a Christian and very religious. When we knew each other a little better, I asked him: 'Who created God?'
He replied that there were some questions we should not ask. We should be humble and learn to accept the universe as it is.
He was the first person I thought of, when you shifted your focus onto your inadvertent tormentor, the Baying Man; him and the final verse of Third World Man which closes the Steely Dan album Gaucho, heralding a two-decade studio hiatus for the group:
“When he's crying out
I just sing that Ghana Rondo
E l'era del terzo mondo [it is the age of the third world]
He's a third world man”
Is there some combination of words that could be whispered into the ear of this brain damaged individual that would quieten his distress; perhaps a strain of music more potent than Michael Jackson. Wouldn't it be awful if that turned out to be Toploader?
When you re-enter the world, fully engaging with it to whatever extent is possible is going to require mountains of courage and not in short bursts either, but on demand, in order to cope with the reality of your condition, the challenges that it presents, and also to weather the callousness of strangers with dignity and resilience. In difficult situations I try to first establish my area of influence – the things that I can control which is where the focus needs to be expended. I think that laying a strong psychological foundation that will enable to withstand whatever difficulties lie ahead of you should be a priority, as it is in the area where there is most potential for improvement. Your body has failed. Your mind, which is certainly above average, needs to step up and learn some new techniques. You need people around you with whom you can be honest and who are able to bear the weight of that honesty.
I hope that my friends would feel comfortable letting me know if they had shit themselves.
I would tell them: It was your problem. Now it is our problem. We will address it together.
Derek Jarman wrote about shitting himself in public in his journals. It was the early days of AIDS and the medication was blitzkrieg-level. The one I remember was Jarman is in the elevator of his building with his young companion HB, and is caught short. He has no choice but to pull down his pants and shit in the lift. He's totally unashamed both in the doing of it and in the writing about it. Jarman's journals are well worth reading, they are published by Penguin under the title Modern Nature.
Things will improve greatly when you’re finally in your own home:
(1) no baying! Peace!
(2) no visiting hours :)
(3) fewer random strangers involved in your care
(4) food of your preference
(5) more control
(6) a schedule that better meets your specific needs (rather than the nursing home’s)
(7) no daft and arbitrary rules
(8) a home office/IT setup that means you can work the way you want and need to
Getting out will come with its own challenges of course, and some things probably won’t be quite the way you want them to begin with, but these problems can and will be resolved.
Most importantly, the institutionalisation and compromises you have been forced to accept will be over.
I simultaneously look forward to and dread reading your posts. They are filled with such honesty and such a raw version of what it means to be alive and what it means to live - two very different states that I now understand thanks to you. I find myself reading and thinking about what it is like for you whilst also thinking about life in general. You open up a whole world. I never know what to write to you as I feel that nothing will really help. But perhaps knowing that I hold you in my thoughts each day and send you much love may give you a second of warmth. I don't think there's much else I can do.
So happy to hear that you’re beginning to see the new life ahead of you when you’re able to leave nursing home! Enormous challenges lie ahead, but your strength shines through so brightly in these post that I have no doubt you’ll succeed.
I’m excited to be with you on your journey.
Oh, I so hope that you will soon be released from the setting in which you find so much pain and unhappiness! I know that new challenges will then await you even then, but perhaps you can find a greater measure of the autonomy you crave and deserve.
Still listening and caring from another continent . . .
So, it’s Saturday and I’m thinking, “I wonder how Paul’s week has been?” I’m always hoping there has been hints of sunshine for you through the many dark clouds. Hopefully you will post today and update all of us that follow you and willing you on from the sidelines.