In Canada the term used is Personal Support Workers. This term ticks most of the boxes I think. I am always glad to see your latest entry in my inbox. I enjoy your writing style so much. It seems wrong of me to enjoy the read when the topic is grim but you are just such a gifted writer. Glad to hear you are getting quality physical care. I hope the Winter is short and Spring brings less challenges and more hope.
Anything written from my mind and life experience, at the start falls so short. But from deep heart space, I wish you a rain of blessings that reach your deepest heart space, allowing you to find and feel meaning as you share your deeply moving, heart wrenching life experience with unknown others who inhabit their unknown sufferings in silence.
As a support worker, this latest piece was so interesting for me. I remember saying to a friend how strange I found this work; as you say, it involves such extreme intimacy with people who you would otherwise never have met.
I work with adults with learning disabilities, so not an identical situation, but for me (and this takes time) as I live alongside the people I support and get to know them in quite some depth, with all bodily functions involved, sometimes a unique emotion can form, which I am not afraid to call a version of love. It is what makes you stay late when your shift should have ended, or keep showing up on dark, winter mornings when the terms and conditions of your job are a joke. The people I support have trusted me to do right by them, and I do, and sometimes it takes all I have to do it, and that is, sort of, what anything good between people is about.
So, yes, it's a strange dynamic, and not really discussed or examined because there is that overlap with the private and personal, and, as support workers, we are, quite rightly, obliged to be professional and discreet at all times. Just thought I would throw in a comment from a 'carer's' perspective.
Thank you Paul for another viscerally incisive set of observations about sci life. In a far less articulate way, I have reflected that as a tetraplegic, you find a way to live with a level of personal vulnerability that is unprecedented outwith the experiences of the very (very) young and the very old. Head fuck is right - only time really assists with the adjustment involved. Keep fighting, and please keep writing.
Your experience strikes me to the core. My father broke his neck when I was young (13 years old). He fell backwards twenty-five feet from a makeshift scaffold while building our house. Needless to say, the accident changed my life forever. I was his personal caregiver at sporadic times when the regular assistant was not working. I can't imagine what it was like for him to have his own son wiping his ass at three in the morning.
In spite of my father's condition, I became an avid rock-climber in college. I've been at it now thirty plus years. Luckily, I haven't had any bad accidents, just a close call a while back involving poor belay communication. I also risk my neck at work (I wash windows and clean gutters). It seems nonsensical to continue doing what I do, but I like my current situation.
In any case, I hope you find continued strength to handle the extreme situation that you are in.
Thank you, for expressing your thoughts and feelings that many would deny to, or be afraid to do.
Also, know that you are helping me understand my patients better. I have just been sick and have noticed that as I get older (61) it is taking me longer to get over even minor things. That, along with your post, is encouraging me to being even more considerate of how my patients are coping mentally (general hospital physio).
The system is forever telling us to get people out: get them up and moving and "directing their own care". However, after a whallop of a diagnosis or condition, that is not necessarily easy or instinctive.
Thank you, again. I will continue and work harder to consider the physical AND emotional impacts, to give better care.
An additional aspect of decimation must be the enormous difficulty it creates in communicating within relationships. When I as a stranger try to write to you, I am acutely aware that anything I say “falls short.” I can only imagine how hard it is for those people who love you to figure this out. How do they talk to you? Comfort you? Encourage you?
All I can say is my heart goes out to you and to all who love you.
In meetings that, in hindsight, were largely exercises in sustained futility, I would occasionally hear someone with no patient-facing experience in healthcare vacantly utter the phrase 'joined-up care'. I would immediately want to reach over the table and shake them violently by the lapels. Joined-up care is the kind of thing that a well-designed, as-yet-to-be-compromised, A.I. (not you Google Gemini) might be good at. In human hands such a complex system of relationships commonly strays into the Escherian realm; all yawning gaps and counter-intuitive leaps into the unknown. It's the proverbial curate's egg – good in parts. In those places where the gears do turn fluently it is usually because there are one or more competent individuals ensuring that they do turn. When there is no-one keeping an eye on things, or when standards are allowed to slip, it can get so the teeth of cogs barely brush against each other. There are also occasions when joined-up care overlaps and two or more parties, whose responsibilities are intended to bring about some collective goal, end up working at cross purposes. I am experiencing something of that nature at the moment. It is frustrating and unnerving.
Of course, joined-up care only works when all the pieces are there ready to be joined-up. In a situation like yours where a great deal of bodily function has been lost, it seems that a common sense approach would be to lean hard on mental well-being. This isn't Avatar; you have no choice other than to live in the body that you have, and there should be as much emphasis placed on your quality of life as there is on physical rehab and general maintenance – the daily squeezing and trouser-hoisting.
The reality is that mental healthcare lags behind other areas of the NHS. It should be a national scandal. I could tell you Dickensian/Kafkaesque horror stories about a local unit where people who were suicidal or who had suffered mental breakdowns, were sent for observation. I was once peripheral to an attempt to look deeper into it. The guy who was leading the investigation was discharged from his position under somewhat dubious circumstances. I attempted to push on with it but was instructed to back down. I have no idea if it has improved.
When I was employed at Southend Hospital, there were two or three psychiatric nurses on-call, presumably not all at once; I assume that there were, at most, two on duty at any given time. If you wanted to arrange a visit for a patient from a mental health consultant, then you had to wait until Tuesday afternoon when a gentlemen would visit from a nearby mental health hospital. The girls who were resident there were continually turning up on the Surgical Assessment Unit, having deliberately swallowed foreign objects. The visiting consultant had time to review two patients. Southend Hospital had a capacity of over 700.
In the community mental healthcare, the NHS has pushed its meagre stack of chips into Cognitive Behavioural Therapy – the fake it till you make it approach. I've been through it and it works to a point. You can get by but the underlying issues are still there, and growing in malignancy, as you paste on a smile and continue to kick the can down the road.
I have been pondering on more accurate nomenclature that will better describe your home carers. Whatever term is used must be broadly clinical, professionally vague and just human enough to pass a Voight-Kampff test. It needs to fly below the radar like office carpet.
Home Dignity Coordinator and Domestic Logistical Assistant are both mouthfuls but will be abbreviated by social workers / hospital discharge teams, et al, to HDC and DLA. The drawback is that the former sounds like it might be the kind of sexual disease they test you for in night clubs in exchange for an 'I've been tested' sticker and a day-glo lolly. The latter could easily be an off-shoot of one of the alphabet agencies in the U.S.
Perhaps Home Buddy will strike a more relatable chord. Picture him, if you will, leaning over you in his voluminous knitted pullover, his hands partly woven together like a failed basket weave. It's how you know that he's relatable. Mark my words, this man is a monster.
On reflection, I think that Home Support Associate strikes the right balance of staid opacity and implied professionalism.
My mum had a terrible stroke and this became her life aswell. She was in hospital for 5 months, and then in a Nursing Home for 7, bedbound and staring at walls, unable to swallow or speak either and fed through a stomach peg-tube. This was apparently better for her than letting her go to Hospice , from hospital, to save all that intolerable suffering. (I got outvoted by family) She hated even waking up. She died in December.
This is good and totally agree with your dissection of the role of Carer - it is a misnomer I think. Controllers maybe, support workers perhaps but a shift away from all the meaning that goes with care. Although it could involve care but doesn’t have to - it is a job that’s right. It’s a new relationship like another you helping you - if it were the other way round how would you make you feel better - if that isn’t too convoluted (not meaning to be)you also talk of identity - really interesting to read this. I do like that you sound more equal to it all - as you can be.
I read Melanie Reid's book a few years ago and was struck by the apparent lack of professional psychological support. In Melanie's column in the Times many years after her accident she once commented that she wondered if she had PTSD. Her friends agreed. Surely PTSD must be very much a feature of traumatic life changing illness or injury. Where is the professional psychological support? Is it just left to the families? It seems barbaric to me. Those catastrophically injured in war receive tremendous emotional support do they not? Rightly so. But where is the professional emotional support in mainstream life?
Reading my comment moment is humiliating. I have been a professional writer and my comment reads like a very bad night on drugs.
Sensitivity and the gift of observance so eloquently comes at a price. ( that is about you) I am editing for clarity and transitions that stayed in my head
I will stop before I start another rant.
Somewhere out all the unbelievable mess I wrote, I trust will get some meaning please know I did not in anyway meant to be critical but I have had what us called a melt down and had no idea how insane I sound what I get lost in ranting.
I just now read some of the other comments about how you have affected so many lives. You are an incredible man
As embarrassed or frightened by my crazy post I can actually even laugh at it. It certainly is a demonstration of autism
I can’t remember how I first read your words. But I immediately recognized an extraordinary gift of writing not often send today
Please forgive all these typos, but because of my own disabilities, my speech is not clear, but also because of Apple’s many dysfunctional software. Dictation is on the top or maybe the Apple Watch I bought in case I fall hose. Alarm cannot be tested to see if it’s working or not. I digress, but I couldn’t help it.
I had met to write back to you and comment on how well you describe things and your willingness to be completely honest I didn’t understand many things especially the devotion to climbing because I’m afraid of heights, etc., etc. but I certainly recognize the pain and the suffering and a desire to somehow get through this but because of all the contrary, things in the universe that enable I found I wi I wished I had words truth or comfort, whatever and once finding out about the website your arm, I intended to reply the best I could, of course for reasons peculiar to me I never did and subsequently I started getting post from people like whoever has that writing class and I can’t get rid of them. Then somehow I learned some of the dynamics of how certain post or whatever people it really helps pay for their care and but then at the same time, it means they have to do a certain amount of work and that’s really hard when you’ve got something really wrong with you.
I’m going to try to make the short or to the point. I should say when I read another post of yours, I can’t remember how much time was between the first one and then I went back and read what you’ve written before the first post I happen to say to try to understand more what I do know, is that the only escape from any situation is to concentrate on someone or something or whatever other than yourself for certainly you’ve suffered. You’re really trying to understand it but my impression is you can’t get past that it happened and your going over and over the wise in the house and what you’ve learned and what you can’t learn.
I am speaking from experience much very different than yours, but suffering always has very similar characteristics. And I know from my own inability to function, from reading literature, studying history, and quite frankly seeing the news right now it’s all these fires which come on these people just keep building on this. I’m not saying that excuses but why do they keep building that? I think it must be obvious for now and now there’s a governor who’s gonna do everything you can so they can rebuild Sorry I digress I just recently found out because of a perfect storm at 75 years old. I’m high functioning autistic. I will condense all that down too one of the things. I absolutely didn’t know about myself as I can go on and on and on I don’t realize no one else particular cares about what I’m talking about so anyway what I was trying to say was what I have learned from my own experience, reading books about pain and at the moment I can’t even think of the guy‘s name who wrote it, but he worked with leopards who have no pain, and he did his residency in London during the blitz amazing story and also Reading about people like I can’t think of his name it’ll come back to me, but Derek Bon Hoffer amazing story I don’t know if it was one day three days before the end of the war amazing story but they’re all around us. You’ve got people just being bombarded like crazy and Ukraine and gays and all these other places And yet as much as loss loss be in America with these fires we focus on the celebrities now they shouldn’t be exempt from being able to grieve, but come on really and so much is obvious in this country. First of all climate change what’s wrong is if you look at the presidential candidates for the last Three or four elections the most disqualifying factor about any of them is that they actually thought they should be president so I’m always I’m saying this and I will try to get back to the point as I believe we have things that show all our dysfunction right in front of us and for whatever reason we don’t see it maybe fear whatever But to me it’s obvious you can’t live having an economy that’s based on buying imports from. Let’s say it not you know what is basically an enemy in many ways and then have to keep push and people to buy and bye-bye and here we are a total financial mess that there’s no way out of Excuse me it’s actual climate change getting back to you, Paul I pray and I do pray for you to have an unbelievable way to find meaning and not just meaning but consolation in who you are and what you’re going through and that in spite of extreme suffering. I would start by as you said I believe there’s somebody who was also a climber that you know that also is paralyzed, but then get a variety all the little kids dying from cancer all the children who can’t walk all the children that have been named to be sex. You can go on and on and on Just start and I fully believe when we take our eyes off of ourselves and it’s not being selfish it’s just you know it’s an extreme attempt to try to understand, but it’s only when we do that that we will ever have understanding and relief about our own circumstances. We live in an amazing world, and I’m not sure because I forget science, but evidently life for human Soli is on such a delicate balance of conflicting things that a slight what I understand pop would destroy us and all the things about who you don’t wanna believe in creation you don’t wanna believe in it. OK I’m a Christian. I can’t prove it and the way that people want things to be proved fine. I walked away from it many times But what I’m saying is just we can’t prove anything and for all this, but I really myself get personally ill thinking about is all the animals most of them that we eat are tortured every day because of their living circumstances and folks if you eat any of that food and I do have two but now I’d go out of my way because I wanna find you know what we have here in Oregon to find places where you can buy chicken and stuff that actually is out live outside, but if we and I have eat bacon, whatever it is or the cheap chickens at Costco, you can’t sell 250,000 of those things a day by being concerned about animal welfare however you can read stories about their magazine so if we could just start with as Paul said I do what I don’t wanna do and I can’t remember and I don’t wanna do something about what I would do what I want to do you know we’ll have to have that when you call paradox in us so I’m gonna stop now and that’s all I can say And pray even if you don’t can imagine that there’s anybody there and that it’s the most anti-intellectual ridiculous thing a person could do well let’s face it every day. We pray pay homage to something that isn’t there or something that simply say the whole idea of America you know I went to school right in the middle of you protested everything And all the paradox and I would actually take a look at Dietrich Bon Hoffer that’s one and then there’s a numeral stories specially of I think sometimes of children or if you think about that woman who was raped you know in France it’s unbelievable story but I have one of these things where I can take on I take on whatever but if you talk about an operation, my stomach will start hurting that not that anywhere close but you don’t have to take on their suffering, but by, but I think being open to learning about whatever these people it’s the only way you’re ever gonna get your mind off your own because The little I read of this last one my impression is it’s very obsessive good writing excellent observations I just don’t see how it can anyway make any of this bearable. OK I’m going God bless you and I’m praying for you. I think you’re terrific. I mean, I just am amazed at the things you can do. I have been able to do, but I’m gonna be quiet because there is a truth and I fully believe you’re going to be able to experience goodbye
The carer, their title and role in theory as compared to stark reality, is a difficult subject for me. My Mum was left completely paralysed down the left side of her body from below the shoulder, due to a stroke caused by an allergic reaction to a pharmaceutical drug. She was in a private nursing home and was abused through appalling neglect under the cloak of Covid, which lead to her premature death. As always your perspective is humbling for me, I hope that you only ever have carers who are truly supportive of you and as a society we never have to deal with anything like Covid again, because of the opportunities it created for abuse.
In Canada the term used is Personal Support Workers. This term ticks most of the boxes I think. I am always glad to see your latest entry in my inbox. I enjoy your writing style so much. It seems wrong of me to enjoy the read when the topic is grim but you are just such a gifted writer. Glad to hear you are getting quality physical care. I hope the Winter is short and Spring brings less challenges and more hope.
Anything written from my mind and life experience, at the start falls so short. But from deep heart space, I wish you a rain of blessings that reach your deepest heart space, allowing you to find and feel meaning as you share your deeply moving, heart wrenching life experience with unknown others who inhabit their unknown sufferings in silence.
As a support worker, this latest piece was so interesting for me. I remember saying to a friend how strange I found this work; as you say, it involves such extreme intimacy with people who you would otherwise never have met.
I work with adults with learning disabilities, so not an identical situation, but for me (and this takes time) as I live alongside the people I support and get to know them in quite some depth, with all bodily functions involved, sometimes a unique emotion can form, which I am not afraid to call a version of love. It is what makes you stay late when your shift should have ended, or keep showing up on dark, winter mornings when the terms and conditions of your job are a joke. The people I support have trusted me to do right by them, and I do, and sometimes it takes all I have to do it, and that is, sort of, what anything good between people is about.
So, yes, it's a strange dynamic, and not really discussed or examined because there is that overlap with the private and personal, and, as support workers, we are, quite rightly, obliged to be professional and discreet at all times. Just thought I would throw in a comment from a 'carer's' perspective.
As ever, all the best to you.
Thank you Paul for another viscerally incisive set of observations about sci life. In a far less articulate way, I have reflected that as a tetraplegic, you find a way to live with a level of personal vulnerability that is unprecedented outwith the experiences of the very (very) young and the very old. Head fuck is right - only time really assists with the adjustment involved. Keep fighting, and please keep writing.
Your experience strikes me to the core. My father broke his neck when I was young (13 years old). He fell backwards twenty-five feet from a makeshift scaffold while building our house. Needless to say, the accident changed my life forever. I was his personal caregiver at sporadic times when the regular assistant was not working. I can't imagine what it was like for him to have his own son wiping his ass at three in the morning.
In spite of my father's condition, I became an avid rock-climber in college. I've been at it now thirty plus years. Luckily, I haven't had any bad accidents, just a close call a while back involving poor belay communication. I also risk my neck at work (I wash windows and clean gutters). It seems nonsensical to continue doing what I do, but I like my current situation.
In any case, I hope you find continued strength to handle the extreme situation that you are in.
Thank you, for expressing your thoughts and feelings that many would deny to, or be afraid to do.
Also, know that you are helping me understand my patients better. I have just been sick and have noticed that as I get older (61) it is taking me longer to get over even minor things. That, along with your post, is encouraging me to being even more considerate of how my patients are coping mentally (general hospital physio).
The system is forever telling us to get people out: get them up and moving and "directing their own care". However, after a whallop of a diagnosis or condition, that is not necessarily easy or instinctive.
Thank you, again. I will continue and work harder to consider the physical AND emotional impacts, to give better care.
An additional aspect of decimation must be the enormous difficulty it creates in communicating within relationships. When I as a stranger try to write to you, I am acutely aware that anything I say “falls short.” I can only imagine how hard it is for those people who love you to figure this out. How do they talk to you? Comfort you? Encourage you?
All I can say is my heart goes out to you and to all who love you.
In meetings that, in hindsight, were largely exercises in sustained futility, I would occasionally hear someone with no patient-facing experience in healthcare vacantly utter the phrase 'joined-up care'. I would immediately want to reach over the table and shake them violently by the lapels. Joined-up care is the kind of thing that a well-designed, as-yet-to-be-compromised, A.I. (not you Google Gemini) might be good at. In human hands such a complex system of relationships commonly strays into the Escherian realm; all yawning gaps and counter-intuitive leaps into the unknown. It's the proverbial curate's egg – good in parts. In those places where the gears do turn fluently it is usually because there are one or more competent individuals ensuring that they do turn. When there is no-one keeping an eye on things, or when standards are allowed to slip, it can get so the teeth of cogs barely brush against each other. There are also occasions when joined-up care overlaps and two or more parties, whose responsibilities are intended to bring about some collective goal, end up working at cross purposes. I am experiencing something of that nature at the moment. It is frustrating and unnerving.
Of course, joined-up care only works when all the pieces are there ready to be joined-up. In a situation like yours where a great deal of bodily function has been lost, it seems that a common sense approach would be to lean hard on mental well-being. This isn't Avatar; you have no choice other than to live in the body that you have, and there should be as much emphasis placed on your quality of life as there is on physical rehab and general maintenance – the daily squeezing and trouser-hoisting.
The reality is that mental healthcare lags behind other areas of the NHS. It should be a national scandal. I could tell you Dickensian/Kafkaesque horror stories about a local unit where people who were suicidal or who had suffered mental breakdowns, were sent for observation. I was once peripheral to an attempt to look deeper into it. The guy who was leading the investigation was discharged from his position under somewhat dubious circumstances. I attempted to push on with it but was instructed to back down. I have no idea if it has improved.
When I was employed at Southend Hospital, there were two or three psychiatric nurses on-call, presumably not all at once; I assume that there were, at most, two on duty at any given time. If you wanted to arrange a visit for a patient from a mental health consultant, then you had to wait until Tuesday afternoon when a gentlemen would visit from a nearby mental health hospital. The girls who were resident there were continually turning up on the Surgical Assessment Unit, having deliberately swallowed foreign objects. The visiting consultant had time to review two patients. Southend Hospital had a capacity of over 700.
In the community mental healthcare, the NHS has pushed its meagre stack of chips into Cognitive Behavioural Therapy – the fake it till you make it approach. I've been through it and it works to a point. You can get by but the underlying issues are still there, and growing in malignancy, as you paste on a smile and continue to kick the can down the road.
I have been pondering on more accurate nomenclature that will better describe your home carers. Whatever term is used must be broadly clinical, professionally vague and just human enough to pass a Voight-Kampff test. It needs to fly below the radar like office carpet.
Home Dignity Coordinator and Domestic Logistical Assistant are both mouthfuls but will be abbreviated by social workers / hospital discharge teams, et al, to HDC and DLA. The drawback is that the former sounds like it might be the kind of sexual disease they test you for in night clubs in exchange for an 'I've been tested' sticker and a day-glo lolly. The latter could easily be an off-shoot of one of the alphabet agencies in the U.S.
Perhaps Home Buddy will strike a more relatable chord. Picture him, if you will, leaning over you in his voluminous knitted pullover, his hands partly woven together like a failed basket weave. It's how you know that he's relatable. Mark my words, this man is a monster.
On reflection, I think that Home Support Associate strikes the right balance of staid opacity and implied professionalism.
Your comments are so incisive and so funny even when shockingly serious: "a day-glo lolly" LOL
My mum had a terrible stroke and this became her life aswell. She was in hospital for 5 months, and then in a Nursing Home for 7, bedbound and staring at walls, unable to swallow or speak either and fed through a stomach peg-tube. This was apparently better for her than letting her go to Hospice , from hospital, to save all that intolerable suffering. (I got outvoted by family) She hated even waking up. She died in December.
Witnessing your loved one’s suffering, when there’s nothing you can do about it, is another level of untold pain. Should be talked about more.
This is good and totally agree with your dissection of the role of Carer - it is a misnomer I think. Controllers maybe, support workers perhaps but a shift away from all the meaning that goes with care. Although it could involve care but doesn’t have to - it is a job that’s right. It’s a new relationship like another you helping you - if it were the other way round how would you make you feel better - if that isn’t too convoluted (not meaning to be)you also talk of identity - really interesting to read this. I do like that you sound more equal to it all - as you can be.
I read Melanie Reid's book a few years ago and was struck by the apparent lack of professional psychological support. In Melanie's column in the Times many years after her accident she once commented that she wondered if she had PTSD. Her friends agreed. Surely PTSD must be very much a feature of traumatic life changing illness or injury. Where is the professional psychological support? Is it just left to the families? It seems barbaric to me. Those catastrophically injured in war receive tremendous emotional support do they not? Rightly so. But where is the professional emotional support in mainstream life?
Thanks for your writing!
Reading my comment moment is humiliating. I have been a professional writer and my comment reads like a very bad night on drugs.
Sensitivity and the gift of observance so eloquently comes at a price. ( that is about you) I am editing for clarity and transitions that stayed in my head
I will stop before I start another rant.
Somewhere out all the unbelievable mess I wrote, I trust will get some meaning please know I did not in anyway meant to be critical but I have had what us called a melt down and had no idea how insane I sound what I get lost in ranting.
I just now read some of the other comments about how you have affected so many lives. You are an incredible man
As embarrassed or frightened by my crazy post I can actually even laugh at it. It certainly is a demonstration of autism
Dear Paul,
I can’t remember how I first read your words. But I immediately recognized an extraordinary gift of writing not often send today
Please forgive all these typos, but because of my own disabilities, my speech is not clear, but also because of Apple’s many dysfunctional software. Dictation is on the top or maybe the Apple Watch I bought in case I fall hose. Alarm cannot be tested to see if it’s working or not. I digress, but I couldn’t help it.
I had met to write back to you and comment on how well you describe things and your willingness to be completely honest I didn’t understand many things especially the devotion to climbing because I’m afraid of heights, etc., etc. but I certainly recognize the pain and the suffering and a desire to somehow get through this but because of all the contrary, things in the universe that enable I found I wi I wished I had words truth or comfort, whatever and once finding out about the website your arm, I intended to reply the best I could, of course for reasons peculiar to me I never did and subsequently I started getting post from people like whoever has that writing class and I can’t get rid of them. Then somehow I learned some of the dynamics of how certain post or whatever people it really helps pay for their care and but then at the same time, it means they have to do a certain amount of work and that’s really hard when you’ve got something really wrong with you.
I’m going to try to make the short or to the point. I should say when I read another post of yours, I can’t remember how much time was between the first one and then I went back and read what you’ve written before the first post I happen to say to try to understand more what I do know, is that the only escape from any situation is to concentrate on someone or something or whatever other than yourself for certainly you’ve suffered. You’re really trying to understand it but my impression is you can’t get past that it happened and your going over and over the wise in the house and what you’ve learned and what you can’t learn.
I am speaking from experience much very different than yours, but suffering always has very similar characteristics. And I know from my own inability to function, from reading literature, studying history, and quite frankly seeing the news right now it’s all these fires which come on these people just keep building on this. I’m not saying that excuses but why do they keep building that? I think it must be obvious for now and now there’s a governor who’s gonna do everything you can so they can rebuild Sorry I digress I just recently found out because of a perfect storm at 75 years old. I’m high functioning autistic. I will condense all that down too one of the things. I absolutely didn’t know about myself as I can go on and on and on I don’t realize no one else particular cares about what I’m talking about so anyway what I was trying to say was what I have learned from my own experience, reading books about pain and at the moment I can’t even think of the guy‘s name who wrote it, but he worked with leopards who have no pain, and he did his residency in London during the blitz amazing story and also Reading about people like I can’t think of his name it’ll come back to me, but Derek Bon Hoffer amazing story I don’t know if it was one day three days before the end of the war amazing story but they’re all around us. You’ve got people just being bombarded like crazy and Ukraine and gays and all these other places And yet as much as loss loss be in America with these fires we focus on the celebrities now they shouldn’t be exempt from being able to grieve, but come on really and so much is obvious in this country. First of all climate change what’s wrong is if you look at the presidential candidates for the last Three or four elections the most disqualifying factor about any of them is that they actually thought they should be president so I’m always I’m saying this and I will try to get back to the point as I believe we have things that show all our dysfunction right in front of us and for whatever reason we don’t see it maybe fear whatever But to me it’s obvious you can’t live having an economy that’s based on buying imports from. Let’s say it not you know what is basically an enemy in many ways and then have to keep push and people to buy and bye-bye and here we are a total financial mess that there’s no way out of Excuse me it’s actual climate change getting back to you, Paul I pray and I do pray for you to have an unbelievable way to find meaning and not just meaning but consolation in who you are and what you’re going through and that in spite of extreme suffering. I would start by as you said I believe there’s somebody who was also a climber that you know that also is paralyzed, but then get a variety all the little kids dying from cancer all the children who can’t walk all the children that have been named to be sex. You can go on and on and on Just start and I fully believe when we take our eyes off of ourselves and it’s not being selfish it’s just you know it’s an extreme attempt to try to understand, but it’s only when we do that that we will ever have understanding and relief about our own circumstances. We live in an amazing world, and I’m not sure because I forget science, but evidently life for human Soli is on such a delicate balance of conflicting things that a slight what I understand pop would destroy us and all the things about who you don’t wanna believe in creation you don’t wanna believe in it. OK I’m a Christian. I can’t prove it and the way that people want things to be proved fine. I walked away from it many times But what I’m saying is just we can’t prove anything and for all this, but I really myself get personally ill thinking about is all the animals most of them that we eat are tortured every day because of their living circumstances and folks if you eat any of that food and I do have two but now I’d go out of my way because I wanna find you know what we have here in Oregon to find places where you can buy chicken and stuff that actually is out live outside, but if we and I have eat bacon, whatever it is or the cheap chickens at Costco, you can’t sell 250,000 of those things a day by being concerned about animal welfare however you can read stories about their magazine so if we could just start with as Paul said I do what I don’t wanna do and I can’t remember and I don’t wanna do something about what I would do what I want to do you know we’ll have to have that when you call paradox in us so I’m gonna stop now and that’s all I can say And pray even if you don’t can imagine that there’s anybody there and that it’s the most anti-intellectual ridiculous thing a person could do well let’s face it every day. We pray pay homage to something that isn’t there or something that simply say the whole idea of America you know I went to school right in the middle of you protested everything And all the paradox and I would actually take a look at Dietrich Bon Hoffer that’s one and then there’s a numeral stories specially of I think sometimes of children or if you think about that woman who was raped you know in France it’s unbelievable story but I have one of these things where I can take on I take on whatever but if you talk about an operation, my stomach will start hurting that not that anywhere close but you don’t have to take on their suffering, but by, but I think being open to learning about whatever these people it’s the only way you’re ever gonna get your mind off your own because The little I read of this last one my impression is it’s very obsessive good writing excellent observations I just don’t see how it can anyway make any of this bearable. OK I’m going God bless you and I’m praying for you. I think you’re terrific. I mean, I just am amazed at the things you can do. I have been able to do, but I’m gonna be quiet because there is a truth and I fully believe you’re going to be able to experience goodbye
The carer, their title and role in theory as compared to stark reality, is a difficult subject for me. My Mum was left completely paralysed down the left side of her body from below the shoulder, due to a stroke caused by an allergic reaction to a pharmaceutical drug. She was in a private nursing home and was abused through appalling neglect under the cloak of Covid, which lead to her premature death. As always your perspective is humbling for me, I hope that you only ever have carers who are truly supportive of you and as a society we never have to deal with anything like Covid again, because of the opportunities it created for abuse.
https://spinal-research.org/news/fda/#:~:text=%2D%20Spinal%20Research-,The%20end%20of%202024%20marks%20a%20watershed%20moment%20for%20those,has%20been%20approved%20for%20use.