I always read your blog with great interest and sympathy (solidarity?) as what you are going through is a more extreme version of what happened to me 13 years ago when I became ill and lost my independence literally overnight. I, too, have a care package, though not live-in. I get something called a ‘personal budget’ and can recruit and manage my own carers, who then stay, sometimes for up to 2 years, and build up a kind of partnership of support. If you are offered this option, I’d definitely recommend it, despite the slight hassle of finding and appointing the right people. You could ask if it’s available for you. But this year for the first time - on UC and PiP - I have been asked to contribute towards paying for the care. I cannot comprehend how someone on disability benefits can be considered well-off enough to pay £71 - my entire mobility allowance that lets me run a car and so leave the house - to the council, despite the fact that I am always under my care budget and have a surplus. Apparently they can take this money from me by force. It is an endless battle and as you say, care and carers are so essential to our society, it’s quite scandalous what low priority and regard is given to the sector and the people who work in it.
I have just read a newspaper headline which says migrants /asylum seekers who cross the channel can get permission to work in social care, construction and farming. As yet I haven't read the whole article but just this headline ,glanced at quickly, is one that insures you have enough carers to look after you, Hanif. But it does not honour and respect the previous lives of these refugees, when will we, as a society/country, treat people as individuals not commodities to be used as seen fit by the government.
It is sad in a way to read this is the anniversary of your starting to write this, blog but being the person you are you have, over the months , often reminded us of many things where we, who are fortunate enough to not be in your position, take our lives for granted. I feel honoured to have read of your struggles and have learnt a great deal from you your writing. I look forward to reading the book and am glad you are enjoying writing , and with Carlo too. All the best,Lisx
Haggling over money, and being told my dying husband was 'costing too much' by having 24 hour care at home, was the thing that brought me closest to the edge. Meeting after meeting, having to justify continuously why you deserve even the smallest amount of care, and being threatened with its withdrawal. Looking up the numbers for lawyers, the district nurse putting in a complaint about the way we were treated. All of this for the last three months of someone's life. Quite funnily, when it was decided to put him in a home to save money, there was no home that would accept him, so the situation kind of solved itself due to crapness!
I'm so happy to hear that you have a partner in crime with whom to write. I only have one or two people I can write with in the whole world and it's an absolute treasure when you find them.
So nice to hear the writing is going well. I have a suggestion for when friends come over and you'd like to have tea or share a drink. Why not ask the guest to make it? People usually like to be useful. Just as sharing your writing makes for companionship, so does being involved in a chore.
Come on people of the UK. Wake up. We need a public backlash against this rotten Tory government. And we need to show Starmer and Labour that what we don't want is a paler, softer Tory-lite imitation of what has gone before. Stop the cuts. Save the NHS. Up the people.
Please, don't sell your house, Mr. Kureishi. I'm sure that there will always be a better solution. Keep up the good work with Carlo. Greetings from Budapest.
I occasionally wonder if you read these comments and what you think about them, whether they bring you levity, or frustration, laughter or just make you yawn. Or all of the above, depending upon your mood.
So here’s my contribution (and it’s the only clean joke I can reliably tell; my sister taught it to me when I was about 8). A man is driving across the Sahara when, surrounded by miles of dunes, he runs out of petrol (my father, a military man, would have snorted at this lack of foresight, but I digress). He is stuck and sits down to ponder his next move when a bee appears. The bee asks him what the problem is and the man recounts his lack of petrol (and possibly his lack of foresight although I’m pretty certain my sister never mentioned that bit). The bee tells him to take off the petrol cap and flies into the tank. Puzzled, he waits for a while and eventually the bee reappears and tells the man he can now continue on his way. The man is skeptical but checks his fuel gauge and miracles alive, there is enough to get him out of the desert. He turns to the bee to express his thanks and asks how this wondrous thing has happened. The bee shrugs and replies “Surely you’ve heard of it, it’s BeePee?”.
(I’m thankful I can’t hear the loud groans at this long telegraphed ending).
Thanks for the writing, the sharing, the insights and links but most of all allowing us a little glimpse into your world; here’s hoping that the third half of your life brings you unexpected joys, and plenty of friends with cocktail mixing skills.
Hi Hanif. A friend put me on to your wonderful blog and only just worked out how to reply. Very relevant to my own predicament. Dizzy spell and fell backwards down 18 stairs on 26th Dec 2022!! C2 & C6 incomplete! Five months in bed in Kingston Hospital, 14 weeks in Stanmore with the dreaded mystery urinary bug mainly in the isolation room next to the one you were in. Can't get back to my 6th floor beautiful flat so in a care home, which thankfully relieves my ex wife and family of my multiple care requirements. So slowly getting some movement back and one fingered keying now possible. Looking forward to catching up with your writings which appear be so very relevant to my predicament.
This wrong-headed focus on who may immigrate frustrates me beyond belief. The very idea of demeaning those who provide a massive range of skill, talent, and pure-on labor that we all benefit from is so incredibly short-sighted. As nations, we can help improve global standards of living and quality of life, but choose instead to blockade it (in the case of the U.S., literally with attempts at walls at high-traffic entry points).
Looking forward to your book, and enjoying hearing about the process of editing/writing with Carlo.
Also, thanks for the link. I'm sure that issue of the NYR is in our house, but my partner tends to bury them in his office, so I'm enjoying the Miles Davis piece online! ;-)
Just those quotes How religious are you? Etcetera. In your next meeting with council do have an actor intone those words. Like a very Tom Stoppard 140 characters. Bless you child....
Thanks. It just happens my collaborators are the largely silent company of simply the presence of all the wordsmiths on Substack. I wrote you when you were in hsptl, I said consider writing a Whatif scenario in which Prohibition had taken hold in the U.S.? Recently some one addressed the impossibity Astral Codex I think. But a good idea is an obsession. Do sell the house it means a million liquid cash, but understand if you do that you have everybodys understanding about the quiet you were talking about. You wld have understanding, for what that is worth. But Britishly you would not complain and receive the passionate sympathy every body_ underlined everybody would moan every day everytime you once a day brought up the subject. Soldier?! Keep it if you can, decisions in general are sideways to the needs of the participants. The house has been as good as a prescription, and aprtmnts are noisy asarule.
I am American and many people are hostile to immigration here. In a country where everyone, except Native Americans, are immigrants or descended from immigrants, the hypocrisy is stunning. People are walking, with young children, through difficult terrain, from South America, desperate for a chance to live a reasonably safe and decent life. It breaks my heart. I hope you continue to get the care you need and continue to heal.
Hanif, I have observed your situation from afar over the last year, from my new home in Sydney, and with more than a little empathy with your plight. I did send you a message last January but didn't get a reply. I am not that surprised, because if your early days (still early?) were anything like mine were then you would have had many other things to contend with - as indeed your blog, which I have read off and on, testifies (also I'm a bit of a luddite with social media, so I suspect that my Twitter message may not have got through).
I had wanted to get it in touch with you because I now have 24 years of lived experience which I would like to share with you. Like you, I was a high achiever, like you living in W14 (Caranday Villas; Google it, a five minute roll from where I think you live), and like you unexpectedly found myself obliged to surrender nearly all my independence suddenly at a stroke - a car crash not the medical affliction!
And if like me you are somewhat headstrong, and don't take on board the opinions of strangers naturally, you might instinctively recoil. I can only tell you that, although I don't go looking for people in my situation, I was struck by how similar we have become, in the blink of an eye. I want to tell you about all this, about life in West London from a new perspective, about the kindness of near strangers (like Sally & Gino at my favourite restaurant Cibo, near you), about the shameful lack of access in London etc etc...
At the very least, you might get some practical tips.
I work for a charity called Ruils-Independent Living based in Richmond, south west London. One of the things we do is provide support to people who employ their own personal care assistants. Would love to talk to talk to you about your experience or maybe share some of your thoughts or even a link to your blog in our newsletters? If this would be of interest to you.
The Book of Floating, by Michael Hutchison, describes the experiences that are possible in a float tank. At the end of the book the author describes his own quadriplegia. There may be some benefit here for you. Float tanks. Please check it out.
I always read your blog with great interest and sympathy (solidarity?) as what you are going through is a more extreme version of what happened to me 13 years ago when I became ill and lost my independence literally overnight. I, too, have a care package, though not live-in. I get something called a ‘personal budget’ and can recruit and manage my own carers, who then stay, sometimes for up to 2 years, and build up a kind of partnership of support. If you are offered this option, I’d definitely recommend it, despite the slight hassle of finding and appointing the right people. You could ask if it’s available for you. But this year for the first time - on UC and PiP - I have been asked to contribute towards paying for the care. I cannot comprehend how someone on disability benefits can be considered well-off enough to pay £71 - my entire mobility allowance that lets me run a car and so leave the house - to the council, despite the fact that I am always under my care budget and have a surplus. Apparently they can take this money from me by force. It is an endless battle and as you say, care and carers are so essential to our society, it’s quite scandalous what low priority and regard is given to the sector and the people who work in it.
I have just read a newspaper headline which says migrants /asylum seekers who cross the channel can get permission to work in social care, construction and farming. As yet I haven't read the whole article but just this headline ,glanced at quickly, is one that insures you have enough carers to look after you, Hanif. But it does not honour and respect the previous lives of these refugees, when will we, as a society/country, treat people as individuals not commodities to be used as seen fit by the government.
It is sad in a way to read this is the anniversary of your starting to write this, blog but being the person you are you have, over the months , often reminded us of many things where we, who are fortunate enough to not be in your position, take our lives for granted. I feel honoured to have read of your struggles and have learnt a great deal from you your writing. I look forward to reading the book and am glad you are enjoying writing , and with Carlo too. All the best,Lisx
Haggling over money, and being told my dying husband was 'costing too much' by having 24 hour care at home, was the thing that brought me closest to the edge. Meeting after meeting, having to justify continuously why you deserve even the smallest amount of care, and being threatened with its withdrawal. Looking up the numbers for lawyers, the district nurse putting in a complaint about the way we were treated. All of this for the last three months of someone's life. Quite funnily, when it was decided to put him in a home to save money, there was no home that would accept him, so the situation kind of solved itself due to crapness!
I'm so happy to hear that you have a partner in crime with whom to write. I only have one or two people I can write with in the whole world and it's an absolute treasure when you find them.
So nice to hear the writing is going well. I have a suggestion for when friends come over and you'd like to have tea or share a drink. Why not ask the guest to make it? People usually like to be useful. Just as sharing your writing makes for companionship, so does being involved in a chore.
Come on people of the UK. Wake up. We need a public backlash against this rotten Tory government. And we need to show Starmer and Labour that what we don't want is a paler, softer Tory-lite imitation of what has gone before. Stop the cuts. Save the NHS. Up the people.
Please, don't sell your house, Mr. Kureishi. I'm sure that there will always be a better solution. Keep up the good work with Carlo. Greetings from Budapest.
Keep writing baby that’s all
That matters 🌹
I occasionally wonder if you read these comments and what you think about them, whether they bring you levity, or frustration, laughter or just make you yawn. Or all of the above, depending upon your mood.
So here’s my contribution (and it’s the only clean joke I can reliably tell; my sister taught it to me when I was about 8). A man is driving across the Sahara when, surrounded by miles of dunes, he runs out of petrol (my father, a military man, would have snorted at this lack of foresight, but I digress). He is stuck and sits down to ponder his next move when a bee appears. The bee asks him what the problem is and the man recounts his lack of petrol (and possibly his lack of foresight although I’m pretty certain my sister never mentioned that bit). The bee tells him to take off the petrol cap and flies into the tank. Puzzled, he waits for a while and eventually the bee reappears and tells the man he can now continue on his way. The man is skeptical but checks his fuel gauge and miracles alive, there is enough to get him out of the desert. He turns to the bee to express his thanks and asks how this wondrous thing has happened. The bee shrugs and replies “Surely you’ve heard of it, it’s BeePee?”.
(I’m thankful I can’t hear the loud groans at this long telegraphed ending).
Thanks for the writing, the sharing, the insights and links but most of all allowing us a little glimpse into your world; here’s hoping that the third half of your life brings you unexpected joys, and plenty of friends with cocktail mixing skills.
Hi Hanif. A friend put me on to your wonderful blog and only just worked out how to reply. Very relevant to my own predicament. Dizzy spell and fell backwards down 18 stairs on 26th Dec 2022!! C2 & C6 incomplete! Five months in bed in Kingston Hospital, 14 weeks in Stanmore with the dreaded mystery urinary bug mainly in the isolation room next to the one you were in. Can't get back to my 6th floor beautiful flat so in a care home, which thankfully relieves my ex wife and family of my multiple care requirements. So slowly getting some movement back and one fingered keying now possible. Looking forward to catching up with your writings which appear be so very relevant to my predicament.
This wrong-headed focus on who may immigrate frustrates me beyond belief. The very idea of demeaning those who provide a massive range of skill, talent, and pure-on labor that we all benefit from is so incredibly short-sighted. As nations, we can help improve global standards of living and quality of life, but choose instead to blockade it (in the case of the U.S., literally with attempts at walls at high-traffic entry points).
Looking forward to your book, and enjoying hearing about the process of editing/writing with Carlo.
Also, thanks for the link. I'm sure that issue of the NYR is in our house, but my partner tends to bury them in his office, so I'm enjoying the Miles Davis piece online! ;-)
Just those quotes How religious are you? Etcetera. In your next meeting with council do have an actor intone those words. Like a very Tom Stoppard 140 characters. Bless you child....
Thanks. It just happens my collaborators are the largely silent company of simply the presence of all the wordsmiths on Substack. I wrote you when you were in hsptl, I said consider writing a Whatif scenario in which Prohibition had taken hold in the U.S.? Recently some one addressed the impossibity Astral Codex I think. But a good idea is an obsession. Do sell the house it means a million liquid cash, but understand if you do that you have everybodys understanding about the quiet you were talking about. You wld have understanding, for what that is worth. But Britishly you would not complain and receive the passionate sympathy every body_ underlined everybody would moan every day everytime you once a day brought up the subject. Soldier?! Keep it if you can, decisions in general are sideways to the needs of the participants. The house has been as good as a prescription, and aprtmnts are noisy asarule.
I am American and many people are hostile to immigration here. In a country where everyone, except Native Americans, are immigrants or descended from immigrants, the hypocrisy is stunning. People are walking, with young children, through difficult terrain, from South America, desperate for a chance to live a reasonably safe and decent life. It breaks my heart. I hope you continue to get the care you need and continue to heal.
Hanif, I have observed your situation from afar over the last year, from my new home in Sydney, and with more than a little empathy with your plight. I did send you a message last January but didn't get a reply. I am not that surprised, because if your early days (still early?) were anything like mine were then you would have had many other things to contend with - as indeed your blog, which I have read off and on, testifies (also I'm a bit of a luddite with social media, so I suspect that my Twitter message may not have got through).
I had wanted to get it in touch with you because I now have 24 years of lived experience which I would like to share with you. Like you, I was a high achiever, like you living in W14 (Caranday Villas; Google it, a five minute roll from where I think you live), and like you unexpectedly found myself obliged to surrender nearly all my independence suddenly at a stroke - a car crash not the medical affliction!
And if like me you are somewhat headstrong, and don't take on board the opinions of strangers naturally, you might instinctively recoil. I can only tell you that, although I don't go looking for people in my situation, I was struck by how similar we have become, in the blink of an eye. I want to tell you about all this, about life in West London from a new perspective, about the kindness of near strangers (like Sally & Gino at my favourite restaurant Cibo, near you), about the shameful lack of access in London etc etc...
At the very least, you might get some practical tips.
I hope I will hear back from you. Email me on info@wheeleasy.org.
Max Burt
www.maxburt.com
Hi
I work for a charity called Ruils-Independent Living based in Richmond, south west London. One of the things we do is provide support to people who employ their own personal care assistants. Would love to talk to talk to you about your experience or maybe share some of your thoughts or even a link to your blog in our newsletters? If this would be of interest to you.
The Book of Floating, by Michael Hutchison, describes the experiences that are possible in a float tank. At the end of the book the author describes his own quadriplegia. There may be some benefit here for you. Float tanks. Please check it out.