“I do pretty much nothing for myself, let alone for other people. I take, take, take, and I never give. “
By writing this blog you are giving something back to us all - especially those of us who find it challenging to communicate with you meaningfully (challenging not because of you, but because we’re too emotionally stunted to know what to say sometimes). Even your posts about suicidal thoughts and emptying your bowels are welcome because they help us to understand what you’re going through and feel connected with you - so in a strange way they make us feel better about ourselves and our inability to communicate with you in the manner that friends should.
So don’t underestimate how much you are giving by writing this blog. It is incredibly brave and skilful to write as you do. I think most of us would find it much easier to “give” by making you a cup of tea, putting cutlery in your hands, or even dealing with bodily functions than to give the time, care and emotional exposure that you do in writing this blog.
I am in the middle of reading a very lengthy account of a man who claims to have been trapped in a city under siege during the Bosnian War, where, for a year, there was no local government, no law enforcement, no electricity or running water, and no organised distribution of food and goods. It is actually a series of message-board posts from a prepper/survivalist forum that have been smooshed together. Such articles used to hold curiosity value. Now I actively make notes and plan accordingly.
He mentions early on that small families, and men who were living on their own, were inevitably robbed by larger groups who overwhelmed them with their superior numbers. It reminded me of how, when I was in Yemen, I would make a point of travelling with local people. I would drink tea and chew qat with them. Everywhere I went, I fostered meaningful relationships. The tourists who were kidnapped in Abyan and later murdered, around the same time that I was there, likely moved through the country in the hermetically-sealed world of a 4WD vehicle. They saw the sights but their lives barely touched the lives of the populace, or did so inorganically in a curated fashion that was unlikely to kindle into friendships. They may have imagined that a man riding shotgun with a Kalashnikov would keep them safe, but that is a delusion. It is friends who keep you safe and who have your back when things turn bad, as you will have their back.
The examples cited above are extreme situations, but no matter where you are in the world and no matter what your circumstances are, you need people around you – a family, a circle of friends, a gang, etc. Individuals who are in your corner. I worked for a while at a foodbank. Middle-aged men would come in on their own and sometimes I would talk to them. After a few of these conversations, a familiar pattern emerged: They were single – either divorced or they never married. They had lost their jobs. Some had experienced serious issues with their health. The majority lived in rented accommodation. Some had been evicted. They were socially isolated. No real friends. Nobody who would stand up for them. It was a wake up call for me. Surround yourself with people who you care about, and who care about you. You can't walk through this life on your own.
In the context of a hospital, you need friends and family in your corner. When a patient has a complaint, the staff will generally focus their attention upon whoever is making the most noise. It shouldn't be that way, but it is. I can think of one situation where two inpatients on the ward where I worked had identical issues with the discharge team at the same time. In one case the family of the patient went berserk. There were threats of lawyers getting involved. The hospital took it very seriously. The other patient had family, but they had become exasperated with him and seemed happy to allow matters to take their course. That guy got screwed. I still think about him. What the hospital did to him was disgraceful and they got away with it because nobody spoke out. I resigned soon after.
The importance of power of attorney was demonstrated in a thread that I read on Twitter this week: A man discovered that his mother, who has dementia, had been admitted to hospital following a fall and then discharged to a nursing home. The hospital, citing data protection laws, refused to give him any information regarding his mother or where she was. When he finally tracked her down, the nursing home also refused to divulge any information and called the police. You are compos mentis, but I imagine, with the set up you have, there is a possibility of you developing the occasional UTI and maybe going a bit doolally until it is brought under control. At least in a situation like that, your parents can't be held at bay by your carers and you won't be left entirely at the mercy of the system.
Friends and family will make allowances for your behaviour according to your circumstances. I am cursed with a good memory. After my grandparents were all dead I went through a period of intermittent guilt where I would tie myself in knots thinking of all the callous and thoughtless things I had said to them over the years. When my nieces and nephews grew up a little, they would occasionally direct equally callous and thoughtless remarks in my direction. I quietly forgave them, as my grandparents probably quietly forgave me. I knew they were on the same path towards developing a conscience that I had walked.
Few people will go through the kind of sudden, unexpected upheaval you have experienced, and if they do then it will likely be towards the end of their lives. I read a line in a John Updike novel recently that stuck with me: “For years nothing happens; then everything happens. Water boils, the cactus blooms, cancer declares itself.”
I am sure your parents, who will have seen you at your best and at your worst, recognise that you are still coming to terms with the legacy of your accident and that you are also dealing with the stress of what lies ahead, while things remain unsettled. They evidently raised you well enough for you to be able to reflect upon your behaviour.
You write beautifully, with such arresting honesty and lucidity. I enjoy reading every word of your posts. I hope you have a literary agent already and a book deal lined up. If not now then I expect this will happen soon.
I am personally very grateful for your posts and find your writing interesting and inspiring. I cannot compare my situation with yours but have experienced the 'pity'. I do my thing, which happens to be art, and trust and hope you will keep offering your writing. Thank you.
Fantastic news on the funding, the house, the chair and that your lovely sounding parents are around to help out. Having to learn to depend on others, and be grateful, sounds absurdly difficult. I don’t think anyone would begrudge you bucking against it and taking out your feelings. We take so much of our independence for granted, especially where we’re toiling.
This is not remotely the same thing, but when I was a teenager I was taken in, clothed fed and housed by a boyfriend’s family because I needed it. I was extremely grateful for this and it’s the reason I was able to complete my A levels - and so I may not have achieved what I have now if it weren’t for this. But... it felt really shitty in some ways - being a charity case. I was a second class citizen in that household - and I can’t blame them for that - they preferred their own kids as they would. I had to meekly accept additional chores and being the object of other’s bad moods etc... it wasn’t that fun. But how could I complain when they were so kind to me? So... I understand that such emotional mincemeat can be complicated. How was I to feel? They didn’t need to be kind to me - and i was very grateful - but I did lose autonomy and the right to just be treated the same as others.
Beautiful post. I have had cerebral palsy from birth...but having a disability thrust upon you is an entirely different thing. Your posts are honest, real and very important. Thank you for writing them. I am THRILLED you got the funding from the local council. Please keep us all updated x
Sometimes just using a different word or emotion can help. So try thinking of it not as ‘being grateful’ or ‘beholdenness’ (that may not actually be a word!) but as ‘love’ or ‘deserving’. It might take the weight off the burden of ‘gratitude’.
The more you show us in these posts the closer I feel to you hey. I can’t even count the number of times I’ve been meaninglessly horrid to my parents, despite them being supremely and invariably loving and supportive of me my entire life. I’m 35 and have only in the last few years started to conquer that demon. Now I live a hemisphere away from them and regret the distance I put between us in the last decade. I’ve since made the choice to make much more effort to show them how much I love them and cherish the time I get with them. When I feel put upon or annoyed (usually irrationally), I remember that choice and make it again. Dad if you’re reading this I love you and Mum very much. (Paul, I shared your blog with my Dad I hope you don’t mind). X
That was a powerful read and I love that someone said turn the word gratitude into love - it seems to take the burden out of it. When I feel grateful I do feel the love, but sometimes it can feel like a burden and can make me feel beholden. I think generally, people love to help other people and some people do it as a vacation of course. Others are naturally giving and caring and we do it when we are parents, we love our children unconditionally. I think one has to be a parent to truly appreciate this feeling. Things balance out too - you may find you will or have become more compassionate to other people, so you will give love back.
YAY you have the funding and a home! This is brilliant!
On another front I’m so grateful for the perspective you offer each time I read a post. All of them are philosophical lessons for me which I consider for long after I read them. So THANK YOU.
Congratulations (?) on getting the funding, it must be a huge relief.
In terms of your parents, I think you are right that gratitude can be exhausting, but I think it’s a call back to your previous posts on intimacy too. Intimacy isn’t just about feeling good around other people, it’s the comfort of knowing they are still going to love you even after you’ve acted like a shit towards them too. Unconditional love comes with that security blanket, that you are allowed to ‘throw a tantrum’ and get upset or angry when there seems to be no particular good reason to do so, and even if the people around you don’t necessarily understand why you’re upset, they respect that you are and don’t take it too personally out of their love for you. Intimacy is just as much the bad as it is the good, and even though it never feels pleasant at the time to be annoyed or angry with someone you love, the ability to resolve that issue and for the relationship to survive and thrive difficulties is what becomes the foundation of the love shared between people. You can be grateful, but it’s also important to be yourself too, even if you are angry at the universe or someone loudly watching the simpsons.
I was going to say something pretty similar, it's precisely because the relationship is fundamentally safe that one's true feelings are free to be expressed.
Paul I'm so relieved to hear about the funding and the chair etc. This is kind of a woo woo thing to say but you know how the Buddhists believe that by being the recipient of charity (like the monk with nothing but his empty bowl) they are doing the giver a karmic favour- there's something to that idea.
Thank you for once again sharing your inner thoughts that really help others to understand the challenges of SCI rehab. Congratulations on getting funding too. Look forward to hearing about your new place 🙏
You are discovering so much about human nature and sharing it with us. What a gift to be able to write so eloquently about your discoveries.
I'd like to think I can put some of your wisdom into action, but unfortunately I can be a bit of a shit with far less provocation than you have. Just this evening I picked a fight with my sister and I do regret it (even though I was right hahaha).
I 'may' have been known to have been sharp and snap at people, and my daughter may have been snappy with me over the years. That's what it is to be human.
Did I ever stop loving my daughter for the shit she heaped on me and her dad when she was her most volatile, adolescent self? Yes, but not forever.
So throw a 'tanty' if it makes you feel better, unfortunately as a 'tanty-thrower' from way back, I know the good feeling doesn't last long... and then remorse makes you feel worse!
When you cut a book deal, your first one will be an autobiography and from then on you are going to help people conquer their emotional Mt Everests.
“I do pretty much nothing for myself, let alone for other people. I take, take, take, and I never give. “
By writing this blog you are giving something back to us all - especially those of us who find it challenging to communicate with you meaningfully (challenging not because of you, but because we’re too emotionally stunted to know what to say sometimes). Even your posts about suicidal thoughts and emptying your bowels are welcome because they help us to understand what you’re going through and feel connected with you - so in a strange way they make us feel better about ourselves and our inability to communicate with you in the manner that friends should.
So don’t underestimate how much you are giving by writing this blog. It is incredibly brave and skilful to write as you do. I think most of us would find it much easier to “give” by making you a cup of tea, putting cutlery in your hands, or even dealing with bodily functions than to give the time, care and emotional exposure that you do in writing this blog.
I’m really happy that you’ve had the good news about your funding, and that you’ve found a house xx
I am in the middle of reading a very lengthy account of a man who claims to have been trapped in a city under siege during the Bosnian War, where, for a year, there was no local government, no law enforcement, no electricity or running water, and no organised distribution of food and goods. It is actually a series of message-board posts from a prepper/survivalist forum that have been smooshed together. Such articles used to hold curiosity value. Now I actively make notes and plan accordingly.
He mentions early on that small families, and men who were living on their own, were inevitably robbed by larger groups who overwhelmed them with their superior numbers. It reminded me of how, when I was in Yemen, I would make a point of travelling with local people. I would drink tea and chew qat with them. Everywhere I went, I fostered meaningful relationships. The tourists who were kidnapped in Abyan and later murdered, around the same time that I was there, likely moved through the country in the hermetically-sealed world of a 4WD vehicle. They saw the sights but their lives barely touched the lives of the populace, or did so inorganically in a curated fashion that was unlikely to kindle into friendships. They may have imagined that a man riding shotgun with a Kalashnikov would keep them safe, but that is a delusion. It is friends who keep you safe and who have your back when things turn bad, as you will have their back.
The examples cited above are extreme situations, but no matter where you are in the world and no matter what your circumstances are, you need people around you – a family, a circle of friends, a gang, etc. Individuals who are in your corner. I worked for a while at a foodbank. Middle-aged men would come in on their own and sometimes I would talk to them. After a few of these conversations, a familiar pattern emerged: They were single – either divorced or they never married. They had lost their jobs. Some had experienced serious issues with their health. The majority lived in rented accommodation. Some had been evicted. They were socially isolated. No real friends. Nobody who would stand up for them. It was a wake up call for me. Surround yourself with people who you care about, and who care about you. You can't walk through this life on your own.
In the context of a hospital, you need friends and family in your corner. When a patient has a complaint, the staff will generally focus their attention upon whoever is making the most noise. It shouldn't be that way, but it is. I can think of one situation where two inpatients on the ward where I worked had identical issues with the discharge team at the same time. In one case the family of the patient went berserk. There were threats of lawyers getting involved. The hospital took it very seriously. The other patient had family, but they had become exasperated with him and seemed happy to allow matters to take their course. That guy got screwed. I still think about him. What the hospital did to him was disgraceful and they got away with it because nobody spoke out. I resigned soon after.
The importance of power of attorney was demonstrated in a thread that I read on Twitter this week: A man discovered that his mother, who has dementia, had been admitted to hospital following a fall and then discharged to a nursing home. The hospital, citing data protection laws, refused to give him any information regarding his mother or where she was. When he finally tracked her down, the nursing home also refused to divulge any information and called the police. You are compos mentis, but I imagine, with the set up you have, there is a possibility of you developing the occasional UTI and maybe going a bit doolally until it is brought under control. At least in a situation like that, your parents can't be held at bay by your carers and you won't be left entirely at the mercy of the system.
Friends and family will make allowances for your behaviour according to your circumstances. I am cursed with a good memory. After my grandparents were all dead I went through a period of intermittent guilt where I would tie myself in knots thinking of all the callous and thoughtless things I had said to them over the years. When my nieces and nephews grew up a little, they would occasionally direct equally callous and thoughtless remarks in my direction. I quietly forgave them, as my grandparents probably quietly forgave me. I knew they were on the same path towards developing a conscience that I had walked.
Few people will go through the kind of sudden, unexpected upheaval you have experienced, and if they do then it will likely be towards the end of their lives. I read a line in a John Updike novel recently that stuck with me: “For years nothing happens; then everything happens. Water boils, the cactus blooms, cancer declares itself.”
I am sure your parents, who will have seen you at your best and at your worst, recognise that you are still coming to terms with the legacy of your accident and that you are also dealing with the stress of what lies ahead, while things remain unsettled. They evidently raised you well enough for you to be able to reflect upon your behaviour.
You write beautifully, with such arresting honesty and lucidity. I enjoy reading every word of your posts. I hope you have a literary agent already and a book deal lined up. If not now then I expect this will happen soon.
I am personally very grateful for your posts and find your writing interesting and inspiring. I cannot compare my situation with yours but have experienced the 'pity'. I do my thing, which happens to be art, and trust and hope you will keep offering your writing. Thank you.
Fantastic news on the funding, the house, the chair and that your lovely sounding parents are around to help out. Having to learn to depend on others, and be grateful, sounds absurdly difficult. I don’t think anyone would begrudge you bucking against it and taking out your feelings. We take so much of our independence for granted, especially where we’re toiling.
This is not remotely the same thing, but when I was a teenager I was taken in, clothed fed and housed by a boyfriend’s family because I needed it. I was extremely grateful for this and it’s the reason I was able to complete my A levels - and so I may not have achieved what I have now if it weren’t for this. But... it felt really shitty in some ways - being a charity case. I was a second class citizen in that household - and I can’t blame them for that - they preferred their own kids as they would. I had to meekly accept additional chores and being the object of other’s bad moods etc... it wasn’t that fun. But how could I complain when they were so kind to me? So... I understand that such emotional mincemeat can be complicated. How was I to feel? They didn’t need to be kind to me - and i was very grateful - but I did lose autonomy and the right to just be treated the same as others.
Beautiful post. I have had cerebral palsy from birth...but having a disability thrust upon you is an entirely different thing. Your posts are honest, real and very important. Thank you for writing them. I am THRILLED you got the funding from the local council. Please keep us all updated x
Your mum will always love you, even when you behave ‘badly’
WHOOHOOO for the funding! And as always thanks for sharing Paul, it's nice to hear from you (even when it's tough) and you are an incredible writer.
Sometimes just using a different word or emotion can help. So try thinking of it not as ‘being grateful’ or ‘beholdenness’ (that may not actually be a word!) but as ‘love’ or ‘deserving’. It might take the weight off the burden of ‘gratitude’.
The more you show us in these posts the closer I feel to you hey. I can’t even count the number of times I’ve been meaninglessly horrid to my parents, despite them being supremely and invariably loving and supportive of me my entire life. I’m 35 and have only in the last few years started to conquer that demon. Now I live a hemisphere away from them and regret the distance I put between us in the last decade. I’ve since made the choice to make much more effort to show them how much I love them and cherish the time I get with them. When I feel put upon or annoyed (usually irrationally), I remember that choice and make it again. Dad if you’re reading this I love you and Mum very much. (Paul, I shared your blog with my Dad I hope you don’t mind). X
That was a powerful read and I love that someone said turn the word gratitude into love - it seems to take the burden out of it. When I feel grateful I do feel the love, but sometimes it can feel like a burden and can make me feel beholden. I think generally, people love to help other people and some people do it as a vacation of course. Others are naturally giving and caring and we do it when we are parents, we love our children unconditionally. I think one has to be a parent to truly appreciate this feeling. Things balance out too - you may find you will or have become more compassionate to other people, so you will give love back.
YAY you have the funding and a home! This is brilliant!
On another front I’m so grateful for the perspective you offer each time I read a post. All of them are philosophical lessons for me which I consider for long after I read them. So THANK YOU.
And have that cafe latte! Or cuppa. Just do it.
PS - please can you share the crowdsourcing site here.
https://www.justgiving.com/crowdfunding/paul-sagar?utm_term=G3g4NAjBJ
Congratulations (?) on getting the funding, it must be a huge relief.
In terms of your parents, I think you are right that gratitude can be exhausting, but I think it’s a call back to your previous posts on intimacy too. Intimacy isn’t just about feeling good around other people, it’s the comfort of knowing they are still going to love you even after you’ve acted like a shit towards them too. Unconditional love comes with that security blanket, that you are allowed to ‘throw a tantrum’ and get upset or angry when there seems to be no particular good reason to do so, and even if the people around you don’t necessarily understand why you’re upset, they respect that you are and don’t take it too personally out of their love for you. Intimacy is just as much the bad as it is the good, and even though it never feels pleasant at the time to be annoyed or angry with someone you love, the ability to resolve that issue and for the relationship to survive and thrive difficulties is what becomes the foundation of the love shared between people. You can be grateful, but it’s also important to be yourself too, even if you are angry at the universe or someone loudly watching the simpsons.
I was going to say something pretty similar, it's precisely because the relationship is fundamentally safe that one's true feelings are free to be expressed.
Paul I'm so relieved to hear about the funding and the chair etc. This is kind of a woo woo thing to say but you know how the Buddhists believe that by being the recipient of charity (like the monk with nothing but his empty bowl) they are doing the giver a karmic favour- there's something to that idea.
Thank you for once again sharing your inner thoughts that really help others to understand the challenges of SCI rehab. Congratulations on getting funding too. Look forward to hearing about your new place 🙏
Hi Paul,
You are discovering so much about human nature and sharing it with us. What a gift to be able to write so eloquently about your discoveries.
I'd like to think I can put some of your wisdom into action, but unfortunately I can be a bit of a shit with far less provocation than you have. Just this evening I picked a fight with my sister and I do regret it (even though I was right hahaha).
I 'may' have been known to have been sharp and snap at people, and my daughter may have been snappy with me over the years. That's what it is to be human.
Did I ever stop loving my daughter for the shit she heaped on me and her dad when she was her most volatile, adolescent self? Yes, but not forever.
So throw a 'tanty' if it makes you feel better, unfortunately as a 'tanty-thrower' from way back, I know the good feeling doesn't last long... and then remorse makes you feel worse!
When you cut a book deal, your first one will be an autobiography and from then on you are going to help people conquer their emotional Mt Everests.