"As for climbing, if nothing else that last abseil at least felt like an overdue step in the process of finally saying goodbye. It hurts. It really hurts." I think you just described the journey where the only way out, is through.
A deeply moving and powerful account of what it feels like to lose the ability to do the thing you love most and remember the skill that gave your life meaning.
Yet you manage to salvage a memory of that past life and fleetingly experience how it once felt.
An honest an uplifting account from a great writer and human being.
I used to attend an annual meeting for PSC sufferers. It was a very informal affair, generously organised by one of the leading British experts on the disease, who would provide a short lecture on recent developments, and field questions. It took place at the John Radcliffe Hospital in Oxford, usually on a Sunday when parts of the enormous hospital campus were eerily deserted. Attendees would dribble into a satellite cafeteria beforehand. The conversation was exclusively focused on PSC. I could understand the desire to compare notes on a shared ailment up to a point, but it never let up. It was like there was no other topic that was worthy of diversion, even for a few minutes. My attitude towards the illness has always been that I can't ignore it, and to a certain extent I am defined by it, but I don't want it to be my identity. For many of these people, it was their entire personality. In the end I stopped going to the meetings. I found them demoralising.
Like yourself, I discovered early on that, in many cases, the only thing that you have in common with another sufferer is the ailment itself. After I was diagnosed, I recall rummaging around Live Journal and a few other similar sites looking for fellow PSC sufferers. I found a handful of people who I thought I might have been friends with had we met under different circumstances – because we had shared interests – and I reached out to them. They are all dead now.
The one who I recall most fondly was Cat who, even discounting her illness, had a really hard life. She faced an extraordinary amount of adversity and was constantly picking herself up off the floor (sometimes literally), putting on a brave face, and smiling through broken teeth (again literally). She didn't wallow in her misfortune, though I know that it hurt her a great deal and that she missed out on some things. I admired her tremendously. When I think of her, as I do almost daily, particularly when I catch myself lapsing into self pity, I do so not through the prism of her illness but in terms of her passion for cinema and music, and her drive to be less introverted that invariably ended with her being thrust into social situations that she didn't know how to navigate, God bless her.
Returning to those Sunday afternoon at John Radcliffe, I never understood why the people I met there would surrender so much of themselves to something that had already taken so much. I hope that I am more like Cat.
This foray into the Lake Distict, to within spitting distance of old haunts and within touching distance of old activities, feels like it might form an integral part of your grieving process. It is one thing to talk about parts of your old life being closed off to you, and quite another to experience that first hand and to accept that the substitutes provided aren't going to work out for you. I wonder how many people in your situation smile and go through the motions.
I used to worry about you a little, but the way you talk about your situation has evolved. There seems to be more fight in you. You want more for yourself and you aren't shy about saying it. I hope that, in some way, you get it.
Paul , thank you for your courage. Life can be so hard in so many ways. I have seen a young man leave for college with dreams for a future and by graduation be struck down by schizophrenia. He now is healthy in body, certainly capable of participating in most outdoor activities, but he rarely leaves a basement room for fear of imaginary dangers. When he thinks of a future, it is often of how to end his misery.
Your openness is a cry into the dark that stalks every one of us at every point in our lives. Nothing can change the fact that each of our lives is filled with real and imaginary terrors that can strike us in unimaginable and countless gruesome ways and that ultimately we all perish and the truth is no one knows what follows, and that alone is a terror no one can escape.
When you are courageous enough to describe your life with honesty, you speak out on behalf of all of us
Thank you for writing this and allowing us to share in this experience with you, the bittersweet moment of connection with the rock and all the frustrations, loss and longing. Really beautiful writing...
Seems to me that the conflict between solitary independence needs and the communal care and opportunities available is a thorny but constant problem for many people with lots of types of disabilities…your eloquence and honesty throws it into relief. Difficult to explain the reality of adapted activity when many expect a sweetened gratefulness. You very clearly appreciate the intention and the efforts of the charity et al but that doesn’t stop you from addressing those very difficult feelings that this trip have, yes, triggered.
I don’t think that anybody really adapts to the move from able to disabled fully. There will always be a division between the two types of population, sometimes visible, sometimes not. I try to think of it as something to acknowledge and then make peace with rather than try to break it down. Exactly how to do that I suspect I will never know but I’m trying. Your writing has helped me appreciate that the mental challenges I thought were just mine are in some shape or form shared by many. I think that helps me with my journey for which i say thankyou. Also kudos for writing such a long piece using voice activated software. The effort put into the tedium that is editing text is much much appreciated.
It is beyond unfortunate that we have learned of your exquisite writing & storytelling abilities from a newsletter about your life after this devastating accident.
Jesus, you are a brave soul. I applaud you for even TRYING this trip, knowing ahead of time how emotionally challenging it would be. Thank you for taking the time to write this so movingly--as usual, you write so eloquently about such difficult subject matter. I felt most the lack of solitude, the need for quiet in this beautiful setting instead of listening to the chitchat of companions you haven't chosen but are only with you because of circumstance.
“The mountains will have to wait a little longer, require a different kind of approach.” This really stuck with me, and has been something I’ve been thinking about for a while but haven’t been able to put into words. Sounds like a really tough trip Paul x
Paul, I couldn’t agree more with your thoughts on adaptive sports.The thought of it ‘icks’ me more than many of the other adaptive strategies designed to assist people with spinal cord injury. I tried a canoe in a swimming pool at rehab and my immediate thought was- if it takes this long even to get me in the bloody thing, what’s the point?! Also- yes- the condescending pity. Arrrg. New to this but hate that so much. I’ve resigned myself to the fact that I probably won’t be getting back to the outdoors that I loved in the way that I used to. I’m happy to stick with indoor exercise and weights for now. At least then one avoids the condescending pity and only has to deal with private grief on what has been lost. Never the less- I’m glad you got to experience time away from the city. That was surely of benefit.
Paul, such is the power of your writing that I felt like I had accompanied you along every part of your “holiday” up north and it was such an emotional trip. Two parts stand out: the part where you are given the helmet and are triggered by that and the bit where you face the rock face, as if looking once more at a lost loved one. It was extremely moving. I’ve only been to Keswick once, only last summer to be exact, and it’s a beautiful part of the world. Thank you for taking me along again. all best wishes to you, Paul - Harriet
Wow. You did well to get to the end of the trip. Hard to get the solitude you needed in the group situation.
Totally agree that putting people together with the same or different circumstances is not always a good combo. Resonates that it doesn't mean you are going to have anything in common and 'make friends." Plus everyone's experience is so different and there are people who just want to talk and talk about their needs and compare notes.Too much if this is the majority of the time.I find this with specific support groups not attracting a cross section of people or views in relation to disability.
In a tiny way I get this - being climber who got despressed, fat and 'trapped' running a small business. I'd rather not see what I'm missing out on.
Taking the video games over going to the wall to see fitter, younger, better looking people 'crushing it' - that's gone, you have to move on and find meaning further down your route - maybe that's the real climb.
"As for climbing, if nothing else that last abseil at least felt like an overdue step in the process of finally saying goodbye. It hurts. It really hurts." I think you just described the journey where the only way out, is through.
A deeply moving and powerful account of what it feels like to lose the ability to do the thing you love most and remember the skill that gave your life meaning.
Yet you manage to salvage a memory of that past life and fleetingly experience how it once felt.
An honest an uplifting account from a great writer and human being.
I used to attend an annual meeting for PSC sufferers. It was a very informal affair, generously organised by one of the leading British experts on the disease, who would provide a short lecture on recent developments, and field questions. It took place at the John Radcliffe Hospital in Oxford, usually on a Sunday when parts of the enormous hospital campus were eerily deserted. Attendees would dribble into a satellite cafeteria beforehand. The conversation was exclusively focused on PSC. I could understand the desire to compare notes on a shared ailment up to a point, but it never let up. It was like there was no other topic that was worthy of diversion, even for a few minutes. My attitude towards the illness has always been that I can't ignore it, and to a certain extent I am defined by it, but I don't want it to be my identity. For many of these people, it was their entire personality. In the end I stopped going to the meetings. I found them demoralising.
Like yourself, I discovered early on that, in many cases, the only thing that you have in common with another sufferer is the ailment itself. After I was diagnosed, I recall rummaging around Live Journal and a few other similar sites looking for fellow PSC sufferers. I found a handful of people who I thought I might have been friends with had we met under different circumstances – because we had shared interests – and I reached out to them. They are all dead now.
The one who I recall most fondly was Cat who, even discounting her illness, had a really hard life. She faced an extraordinary amount of adversity and was constantly picking herself up off the floor (sometimes literally), putting on a brave face, and smiling through broken teeth (again literally). She didn't wallow in her misfortune, though I know that it hurt her a great deal and that she missed out on some things. I admired her tremendously. When I think of her, as I do almost daily, particularly when I catch myself lapsing into self pity, I do so not through the prism of her illness but in terms of her passion for cinema and music, and her drive to be less introverted that invariably ended with her being thrust into social situations that she didn't know how to navigate, God bless her.
Returning to those Sunday afternoon at John Radcliffe, I never understood why the people I met there would surrender so much of themselves to something that had already taken so much. I hope that I am more like Cat.
This foray into the Lake Distict, to within spitting distance of old haunts and within touching distance of old activities, feels like it might form an integral part of your grieving process. It is one thing to talk about parts of your old life being closed off to you, and quite another to experience that first hand and to accept that the substitutes provided aren't going to work out for you. I wonder how many people in your situation smile and go through the motions.
I used to worry about you a little, but the way you talk about your situation has evolved. There seems to be more fight in you. You want more for yourself and you aren't shy about saying it. I hope that, in some way, you get it.
Paul , thank you for your courage. Life can be so hard in so many ways. I have seen a young man leave for college with dreams for a future and by graduation be struck down by schizophrenia. He now is healthy in body, certainly capable of participating in most outdoor activities, but he rarely leaves a basement room for fear of imaginary dangers. When he thinks of a future, it is often of how to end his misery.
Your openness is a cry into the dark that stalks every one of us at every point in our lives. Nothing can change the fact that each of our lives is filled with real and imaginary terrors that can strike us in unimaginable and countless gruesome ways and that ultimately we all perish and the truth is no one knows what follows, and that alone is a terror no one can escape.
When you are courageous enough to describe your life with honesty, you speak out on behalf of all of us
Thank you
Clark
Thank you for writing this and allowing us to share in this experience with you, the bittersweet moment of connection with the rock and all the frustrations, loss and longing. Really beautiful writing...
Seems to me that the conflict between solitary independence needs and the communal care and opportunities available is a thorny but constant problem for many people with lots of types of disabilities…your eloquence and honesty throws it into relief. Difficult to explain the reality of adapted activity when many expect a sweetened gratefulness. You very clearly appreciate the intention and the efforts of the charity et al but that doesn’t stop you from addressing those very difficult feelings that this trip have, yes, triggered.
I don’t think that anybody really adapts to the move from able to disabled fully. There will always be a division between the two types of population, sometimes visible, sometimes not. I try to think of it as something to acknowledge and then make peace with rather than try to break it down. Exactly how to do that I suspect I will never know but I’m trying. Your writing has helped me appreciate that the mental challenges I thought were just mine are in some shape or form shared by many. I think that helps me with my journey for which i say thankyou. Also kudos for writing such a long piece using voice activated software. The effort put into the tedium that is editing text is much much appreciated.
It is beyond unfortunate that we have learned of your exquisite writing & storytelling abilities from a newsletter about your life after this devastating accident.
Jesus, you are a brave soul. I applaud you for even TRYING this trip, knowing ahead of time how emotionally challenging it would be. Thank you for taking the time to write this so movingly--as usual, you write so eloquently about such difficult subject matter. I felt most the lack of solitude, the need for quiet in this beautiful setting instead of listening to the chitchat of companions you haven't chosen but are only with you because of circumstance.
Your words… they are the literary equivalent of an extreme workout. I think they’re your superpower. APPLAUDS.
More, please.
“The mountains will have to wait a little longer, require a different kind of approach.” This really stuck with me, and has been something I’ve been thinking about for a while but haven’t been able to put into words. Sounds like a really tough trip Paul x
Paul, I couldn’t agree more with your thoughts on adaptive sports.The thought of it ‘icks’ me more than many of the other adaptive strategies designed to assist people with spinal cord injury. I tried a canoe in a swimming pool at rehab and my immediate thought was- if it takes this long even to get me in the bloody thing, what’s the point?! Also- yes- the condescending pity. Arrrg. New to this but hate that so much. I’ve resigned myself to the fact that I probably won’t be getting back to the outdoors that I loved in the way that I used to. I’m happy to stick with indoor exercise and weights for now. At least then one avoids the condescending pity and only has to deal with private grief on what has been lost. Never the less- I’m glad you got to experience time away from the city. That was surely of benefit.
Paul, such is the power of your writing that I felt like I had accompanied you along every part of your “holiday” up north and it was such an emotional trip. Two parts stand out: the part where you are given the helmet and are triggered by that and the bit where you face the rock face, as if looking once more at a lost loved one. It was extremely moving. I’ve only been to Keswick once, only last summer to be exact, and it’s a beautiful part of the world. Thank you for taking me along again. all best wishes to you, Paul - Harriet
Always so truthful and insightful about where you are now- physically and socially- so far from where you want to be.
Wow. You did well to get to the end of the trip. Hard to get the solitude you needed in the group situation.
Totally agree that putting people together with the same or different circumstances is not always a good combo. Resonates that it doesn't mean you are going to have anything in common and 'make friends." Plus everyone's experience is so different and there are people who just want to talk and talk about their needs and compare notes.Too much if this is the majority of the time.I find this with specific support groups not attracting a cross section of people or views in relation to disability.
Your honesty is wonderful and so very valuable to so many of us.
In a tiny way I get this - being climber who got despressed, fat and 'trapped' running a small business. I'd rather not see what I'm missing out on.
Taking the video games over going to the wall to see fitter, younger, better looking people 'crushing it' - that's gone, you have to move on and find meaning further down your route - maybe that's the real climb.