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 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).