I responded to your comments regularly at first because I admired your honesty as I do your writing, and was hopeful that, as a disabled person since 14 and a lifelong activist, I could help. But life does indeed throw us surprises.
In August this year unannounced and unexpected, I experienced a subarachnoid haemorrhage which comes with the most painful headache imaginable turning me into a howling beast. After six more bleeds in my brain, I was soon in intensive care with the threat of death over me, and loved ones gathered in the relatives' room. I remember very little, only strange things such as random hallucinations and the time I spoke gibberish. I don't thing I can share the link to my monthly Byline Times column but it is quicker to read there if you and your readers want to know more. It is also in the current printed edition.
Perhaps because of my life as a disabled person, I worried less about certain things and worried most of all about whether I could write again, no matter what the process - and these days I am on full voice dictation. Neurology testing showed that 100% of my language function remains intact! On that, I feel blessed.
I'm 63 and still face so many barriers because the disability experience is seen only as negative. But I believe this also relates to why you worry about who you now are and what you might become. There is very little that shows the extent of our lives, particularly through the transmutation of fiction. Despite the common view, we are not homogenised and while in hospital with my brain traumas, I fought daily against what we call pity porn, that we exist merely for others to feel sorry for our worthless and pathetic existence.
I won't have that.
Only you can find a framework and a comfortable identity for your new life. But please look around and seek out what we are behind the veil that has been imposed upon us. I feel you know already how your experience is firing passion into your writing. I hope it takes you further, and helps you seek out those you don't know, those that have been hidden who have such a lot of great wisdom. You do have a slight privilege of being known and successful upon which your new life can grow. This isn't to dismiss the trauma of your experience – I am going through one myself now with impaired memory, further loss of movement, intense pain and no clear prognosis. But I am still me, and I feel privileged to have enough experience in this life to know that I can prevail and fight on. Don't ever let the non-disabled bastards dictate to you or put you down.
Oh one of my favourite memories on my last day in ICU, was the hand-fed cheese and biscuits given to me by the writer Jake Arnott. It was humanity, it was hope, a purity of friendship. And the cheese was lovely….
This is one of those times when I think that a little candour and honesty is beneficial; where forewarnings are of more practical use than reassurances.
I lived with my grandmother during the final years of her life, when her arthritis made it impossible for her to remain fully independent. Her hands were like a pair of screwed-up brown paper bags. Her long bones were warped and crooked. Her elbows were oak-appled. Staring at them for too long triggered, within my nervous system, a live wire of discomfort. The mortar joins of her knees had crumbled to powder and been replaced. Those well-intended surgical interventions, that she underwent in her 50s, were a drop in the ocean, their efficacy diluted by the extent and the relentless progression of her illness. In her youth she had been an avid tennis player. Her hands knew their way around the strings of a violin. During her final years, it was a struggle for her to hold a teacup. Her left leg kept getting infected. It was so painful that even a light blanket resting on top of it caused her agony. I went out and purchased a variety different sheets until I found one that she could tolerate. Her consultant wanted to amputate below the knee. Despite the pain that it caused her, my grandmother couldn't bear to think of herself as a one-legged woman. The leg stayed on. Eventually it killed her.
The point came when she could no longer walk. While she was in hospital, I moved elements of her bedroom into the dining room downstairs, where the extended family used to converge on Boxing Day – a task that was made more complicated by the stair-lift that had been installed a year before. For the remainder of her life, my grandmother slept in this incongruous setting, surrounded by the wall cabinets of crystal glasses, the soda fountain, the wheeled bar that would open out to display half-drunk bottles of spirits, and my late grandfather's sailing trophies, and by new acquisitions on loan from the local health authority – the commode and the hoist. I regret not taking greater pains to elevate her new bedroom into something that was better suited to its new purpose. It always looked like a pair of photo transparencies of different rooms had been layered, one on top of the other.
She had carers who would show up during the day to wash and dress her. Sometimes they would arrive late to get her up, or ridiculously early to put her to bed. Somebody on a home-visiting schedule always has to be last, and someone always has to be first.
Some of the carers were conscientious human beings who worked for a pittance. Some were lazy and ignored the care plan. There were a couple of bastards. There was a problem with the mobile phone I had bought my grandmother for emergencies, on the off-chance that her panic button didn't work. When I opened it up to look at the battery I discovered that the SIM card had been removed. I know who took it. She was caught a few weeks later stealing from one of the other addresses she visited. I went to court to see her get sentenced. She was given two weeks inside. I still see her around town.
There is only so much that a carer can do in a time slot; the bare essentials. It fell to me to contend with everything else. It was a change of pace. My grandmother's horizons had shrunk, but mine had too. It didn't help that many of my friends had moved away. My social life dwindled. I didn't go out much.
The biggest adjustment was coming to terms with the fact that this wasn't a temporary situation that would improve. It was ongoing and something to be managed. Under such circumstances, it is very easy to slip into a mindset where the person you are caring for is reduced to a set of known responsibilities and unanticipated problems that need to be addressed. You can begin to resent them or, even worse, to lose sight of them as a human being.
I found it helpful to break down what needed to be done into smaller tasks. I did the same thing with any problems that arose – what is the issue, what is the ideal outcome, and how to we get there?
The most important thing that I did was to cultivate moments in the day where I engaged with my grandmother person to person, on a more or less even footing. There was a lot that she couldn't do, but she could still hold a conversation. So I drank tea with her, and ate dinner with her, and watched TV with her. She is the member of my family who I loved the most – not a saint by any means – but a person who was directly responsible for a lot of the good things in my life, and many of the good parts of who I am as a person. I never wanted to think of her as a burden.
Though she has been dead for a long time, I am still sometimes awoken by the sound of her calling out to me in alarm; the way that she would when she had caught herself in mid-fall, or had half-tumbled out of bed (before the side-rails were installed) or, on one occasion, when she had become helplessly entangled in her own sheets and couldn't free herself. She was so upset by the experience that afterwards, even though it was early morning, we sat next to each other on the mattress and ate Mars ice-creams. I thought something ridiculous like that might take her out of that bad moment. Anyway, I still sometimes hear her voice and rise to my feet, still not fully awake, but ready to go to her rescue, even though she doesn't need me any more, and it is just an echo of the past.
A couple of weeks from now, I will go to her grave in Southend cemetery, where it stands overshadowed by a row of conifers that screen-off the industrial estate behind. The ornaments from an adjacent headstone used to to encroach onto her patch. It used to annoy me. That memorial doesn't seem to be attended any more. I will clean both stones and help to attach a holly wreath to my grandmother's.
This Wednesday, I will make the long pilgrimage to the grave of her husband's parents – my great parents – in the terraced graveyard at St Peter's. Many years ago, the headstone came loose and slipped down the hill. It took the combined efforts of my grandfather, myself and my two brothers, hauling on a rope, that we had wrapped around a tree for leverage, to get it back up.
My human contact with these people is an artefact of the past. All I have left now are responsibilities that I carry out with love and gratitude.
Dear Hanif, I don’t blame you for being apprehensive. Anyone would be in your situation. I found myself in a similar situation when I went from being mobile with a prosthetic leg and multisystem disease to being wheelchair dependent this year.
My advice would be to stay calm and live in the present while making provisions for the future. I am familiar with the ‘cauldron of worry’, but the more time you spend stirring the contents of the pot and mulling over them, the more the stew of anxiety will develop. I am a great fan of pragmatic approaches such as lists. They help you feel as if you are keeping on top of things without becoming submerged.
The hospital will make arrangements for the carers and district nurses you need, but it’s essential that you write down in your phone or somewhere easily accessible the emergency phone numbers of every department of the council and private companies you will need to contact. This will help you feel in control, for example, if you receive a hospital appointment for a day and time when your carer is due to arrive.
I don’t know how similar things in England are to the way it works in Scotland, but In my emergency contact list, I have a number for the ambulance booking service which I need to get out to take me to every hospital appointment, since I’m in a wheelchair and live on the second floor of a block of flats with no lift. I also have written down my NHS number/CHI number because they will ask for it every time you phone. Then you need the number for the district nurses, which are often centrally based rather than being attached to a particular GP practice, and the number for your community occupational therapist department. There may also be a council department dealing with repairs required in the homes of disabled people. Although I had to pay to get my bathroom converted privately into a wet room compatible with a wheelchair, I did get some help from the council in terms of elevating the height of a futon so I could transfer on and off it more easily. They may also provide you cushions to raise the height of sofas et cetera.
You will no doubt need a hospital bed at home, and one with an air flow mattress to guard against pressure sores. Make sure this is in place before you are sent home, it is not worth risking pressure sores. I’ve had six this year, and they were agony.
Also, write down the number of the community physio who will be coming to visit you, and once they start visiting, you can communicate with them directly via text to arrange appointments et cetera.
You will be taken on a home visit by the occupational therapist to make sure that you can easily negotiate your area of the home with your wheelchair and transfer safely. I hope you are having grab rails installed in bedroom and bathroom. It’s very important to have one on each side of the shower so that you are safe on the shower seat.
Take things slowly. Please don’t plan to be able to get up, shower, sit in your chair, go to the shops, and get back to teaching immediately. Will you be able to teach via zoom? That would be far easier for you then having to go in physically. Make sure that the desk from which you will speak to your students is set up to make zoom comfortable and with everything you need to hand.
It is devastating to go through a life change. But thank goodness, you are a cerebral person rather than a sports fanatic. You will still be able to engage in all the intellectual activities you loved before. And you can gradually get back into travel and venturing out of the home, but don’t rush things. You want to be fully confident before you place yourself in any intimidating situations.
Don’t worry too much about other people and how they see you and speak to you. As with trolls on social media, the way they approach you says much more about them than about you. Try and remain calm.
I struggle a lot with impatience because I’m quick minded, but my body is in constant pain and very slow. I currently have bone infection in one hand and an ulcer in the thumb stump on the other so using my hands is very difficult. Added to being wheelchair-bound, this can make for a lot of frustration. Try to be kind to yourself, don’t berate yourself about your disabilities or place yourself in positions of danger by doing too much.
Make time for exercises with the physiotherapist. With you not being able to move at the moment, most of the movements will be passive, with the Physio, moving your limbs to try and stop contractures forming. But if, in time, there is anything you can do to try and strengthen any part of your body, which regains function, it’s worth spending time on it. Just because rewards are little, and slow to see, we shouldn’t lose hope.
Make sure that Isabella and the children have time to spend with friends when you have a carer present. They can’t take care of you unless they are healthy and happy themselves. They may be eligible for respite which would mean you coming into hospital for a week or so every year.
Try and concentrate not on what you can’t do any more, but on what you can do. Of course, you will have low periods psychologically - it’s only natural. I have found immense comfort in wonderful books, engrossing tv, and, most of all, the company of loved ones. Nowadays, you can practically reproduce a restaurant experience at home by getting food delivered - this might be easier than negotiating the busy streets to eat out. And keep writing. That is your lifeline.
How strange to read that at this same moment in time our family is facing the effects of a slow paralysis on our beloved sister to read of the effects of yours on those closest to you. I wish you all periods of joy and laughter in these turbulent seas; for us it is an education we hoped never to acquire and I would be willing to bet for you and yours too. Sending love, and grateful thanks for your writings.
I wish you the very best in your move back home, Hanif! I expect it will be more full of consolations than comparisons. And I have a feeling you will flourish and continue to astonish us with your clear-eyed look at the world around you and beyond you. Thank you for walking us through this year of shock and trauma and giving us all more heart! ❤️
Hope all goes well for your homecoming. I think in the end, you will be glad to be resuming some of the elements of a 'normal' life again. It is an achievement on so many people's part to get to this point within a year. Yes of course (as someone on this thread highlights), there are atrocities going on in the world and I'm sure when the time is right, you may address them, but for now, your personal struggle and the impact on people close to you are naturally and necessarily at the forefront of your concerns. Trepidation yes, but also perhaps some hopes of more freedom and choice. Inevitably things will change. Your concern and love for those who care for you will make a lot of difference. X
Well you’re a very honest guy Hanif.don’t know how you have put up with a natural liar like me for so long. Very good piece. Much love and see you soon Nige
Congratulations on reaching nineteen thousand subscribers. I am astonished that so many read your wisdom and filth and don't see fit to give you a 'like', but perhaps they read on other forums that don't allow it.
I'm afraid I have no disability yet to tell you about apart from a little arthritis; I'm reasonably fit and living in a privileged position in Aotearoa / NZ, but that might change as the rednecks have voted in a fascist government here.
My mind tells me I'm 30 years old, but my body says fuk off, you're 90 and it's closer to the truth so I go up the ladder once again to work on the solar and wonder if it might be the last time.
I have faith you'll work out your domestic situation and get the life you deserve.
Married with a family, I have a lot of sympathy and concern for Isabella and your family. You're right. It must be a huge adjustment for them. So much work and worry! But what a wonderful development--going home. I remember when you so wanted to just be home and how distant it seemed. I, too, appreciate your honesty and openness about your experience. I hope to hear the good and the bad of your next chapter. I'm so glad you seem to be resuming your life as a writer engaged with the world--but a world that few of us rarely see or know about from the inside.
Hanif, I look forward to reading your blog like many others. I feel I share a common bond with you listening to your deepest worries, vulnerability and terrible inconveniences. I feel with you! One day I look forward to meeting you in person!
Dear Hanif, I look forward to every episode of your 'new' life. You explain your trials, tribulations, and fears, brilliantly. Might there, I wonder, be a job for you on TV or radio, or a newspaper column at the very least?
You write: "I dread my fantasies about what healthy and exciting lives they lead in their fit bodies." Thank you for this reminder! I was just lamenting that my present, fit body is not as appealing to men as it used to be. I look at younger women and imagine their exciting lives, even though I am in a wonderful marriage. And then I read about your life, which is an important corrective to my bleak and trivial thoughts. You continue to inspire and challenge me--and so many others.
I just came back from visiting a dear friend who was recently diagnosed with Alzheimer’s when I read your post, Hanif. As ever, you remake my thoughts on how we live and what we are. I’m so sorry that Isabella didn’t feel able to participate in the conversation you planned to make public. I long to know her. It is an astonishment how you are transparent to us in your writing. Thank you. I send my strongest praise to you.
Reading this, I think of my 92-year-old mother, who struggles to walk with a walker and lives with a full-time caretaker and suffers from "age-related cognitive decline" which doesn't differ much from other types of senility or dementia in terms of effect. The difference for you of course is you arrived at this state suddenly rather than gradually and your brain is still functioning close to the top of its game. But its a situation we're all going to end up in one day. So difficult to try to contemplate it all in one go! No wonder you're awash in a cauldron of worry.
Dear Hanif,
Pleased you are almost home!
I responded to your comments regularly at first because I admired your honesty as I do your writing, and was hopeful that, as a disabled person since 14 and a lifelong activist, I could help. But life does indeed throw us surprises.
In August this year unannounced and unexpected, I experienced a subarachnoid haemorrhage which comes with the most painful headache imaginable turning me into a howling beast. After six more bleeds in my brain, I was soon in intensive care with the threat of death over me, and loved ones gathered in the relatives' room. I remember very little, only strange things such as random hallucinations and the time I spoke gibberish. I don't thing I can share the link to my monthly Byline Times column but it is quicker to read there if you and your readers want to know more. It is also in the current printed edition.
Perhaps because of my life as a disabled person, I worried less about certain things and worried most of all about whether I could write again, no matter what the process - and these days I am on full voice dictation. Neurology testing showed that 100% of my language function remains intact! On that, I feel blessed.
I'm 63 and still face so many barriers because the disability experience is seen only as negative. But I believe this also relates to why you worry about who you now are and what you might become. There is very little that shows the extent of our lives, particularly through the transmutation of fiction. Despite the common view, we are not homogenised and while in hospital with my brain traumas, I fought daily against what we call pity porn, that we exist merely for others to feel sorry for our worthless and pathetic existence.
I won't have that.
Only you can find a framework and a comfortable identity for your new life. But please look around and seek out what we are behind the veil that has been imposed upon us. I feel you know already how your experience is firing passion into your writing. I hope it takes you further, and helps you seek out those you don't know, those that have been hidden who have such a lot of great wisdom. You do have a slight privilege of being known and successful upon which your new life can grow. This isn't to dismiss the trauma of your experience – I am going through one myself now with impaired memory, further loss of movement, intense pain and no clear prognosis. But I am still me, and I feel privileged to have enough experience in this life to know that I can prevail and fight on. Don't ever let the non-disabled bastards dictate to you or put you down.
Oh one of my favourite memories on my last day in ICU, was the hand-fed cheese and biscuits given to me by the writer Jake Arnott. It was humanity, it was hope, a purity of friendship. And the cheese was lovely….
Penny
I’m still me: the battle cry of the disabled. Thank you for this achingly true comment, gestated from a lifetime of deep thinking.
This is one of those times when I think that a little candour and honesty is beneficial; where forewarnings are of more practical use than reassurances.
I lived with my grandmother during the final years of her life, when her arthritis made it impossible for her to remain fully independent. Her hands were like a pair of screwed-up brown paper bags. Her long bones were warped and crooked. Her elbows were oak-appled. Staring at them for too long triggered, within my nervous system, a live wire of discomfort. The mortar joins of her knees had crumbled to powder and been replaced. Those well-intended surgical interventions, that she underwent in her 50s, were a drop in the ocean, their efficacy diluted by the extent and the relentless progression of her illness. In her youth she had been an avid tennis player. Her hands knew their way around the strings of a violin. During her final years, it was a struggle for her to hold a teacup. Her left leg kept getting infected. It was so painful that even a light blanket resting on top of it caused her agony. I went out and purchased a variety different sheets until I found one that she could tolerate. Her consultant wanted to amputate below the knee. Despite the pain that it caused her, my grandmother couldn't bear to think of herself as a one-legged woman. The leg stayed on. Eventually it killed her.
The point came when she could no longer walk. While she was in hospital, I moved elements of her bedroom into the dining room downstairs, where the extended family used to converge on Boxing Day – a task that was made more complicated by the stair-lift that had been installed a year before. For the remainder of her life, my grandmother slept in this incongruous setting, surrounded by the wall cabinets of crystal glasses, the soda fountain, the wheeled bar that would open out to display half-drunk bottles of spirits, and my late grandfather's sailing trophies, and by new acquisitions on loan from the local health authority – the commode and the hoist. I regret not taking greater pains to elevate her new bedroom into something that was better suited to its new purpose. It always looked like a pair of photo transparencies of different rooms had been layered, one on top of the other.
She had carers who would show up during the day to wash and dress her. Sometimes they would arrive late to get her up, or ridiculously early to put her to bed. Somebody on a home-visiting schedule always has to be last, and someone always has to be first.
Some of the carers were conscientious human beings who worked for a pittance. Some were lazy and ignored the care plan. There were a couple of bastards. There was a problem with the mobile phone I had bought my grandmother for emergencies, on the off-chance that her panic button didn't work. When I opened it up to look at the battery I discovered that the SIM card had been removed. I know who took it. She was caught a few weeks later stealing from one of the other addresses she visited. I went to court to see her get sentenced. She was given two weeks inside. I still see her around town.
There is only so much that a carer can do in a time slot; the bare essentials. It fell to me to contend with everything else. It was a change of pace. My grandmother's horizons had shrunk, but mine had too. It didn't help that many of my friends had moved away. My social life dwindled. I didn't go out much.
The biggest adjustment was coming to terms with the fact that this wasn't a temporary situation that would improve. It was ongoing and something to be managed. Under such circumstances, it is very easy to slip into a mindset where the person you are caring for is reduced to a set of known responsibilities and unanticipated problems that need to be addressed. You can begin to resent them or, even worse, to lose sight of them as a human being.
I found it helpful to break down what needed to be done into smaller tasks. I did the same thing with any problems that arose – what is the issue, what is the ideal outcome, and how to we get there?
The most important thing that I did was to cultivate moments in the day where I engaged with my grandmother person to person, on a more or less even footing. There was a lot that she couldn't do, but she could still hold a conversation. So I drank tea with her, and ate dinner with her, and watched TV with her. She is the member of my family who I loved the most – not a saint by any means – but a person who was directly responsible for a lot of the good things in my life, and many of the good parts of who I am as a person. I never wanted to think of her as a burden.
Though she has been dead for a long time, I am still sometimes awoken by the sound of her calling out to me in alarm; the way that she would when she had caught herself in mid-fall, or had half-tumbled out of bed (before the side-rails were installed) or, on one occasion, when she had become helplessly entangled in her own sheets and couldn't free herself. She was so upset by the experience that afterwards, even though it was early morning, we sat next to each other on the mattress and ate Mars ice-creams. I thought something ridiculous like that might take her out of that bad moment. Anyway, I still sometimes hear her voice and rise to my feet, still not fully awake, but ready to go to her rescue, even though she doesn't need me any more, and it is just an echo of the past.
A couple of weeks from now, I will go to her grave in Southend cemetery, where it stands overshadowed by a row of conifers that screen-off the industrial estate behind. The ornaments from an adjacent headstone used to to encroach onto her patch. It used to annoy me. That memorial doesn't seem to be attended any more. I will clean both stones and help to attach a holly wreath to my grandmother's.
This Wednesday, I will make the long pilgrimage to the grave of her husband's parents – my great parents – in the terraced graveyard at St Peter's. Many years ago, the headstone came loose and slipped down the hill. It took the combined efforts of my grandfather, myself and my two brothers, hauling on a rope, that we had wrapped around a tree for leverage, to get it back up.
My human contact with these people is an artefact of the past. All I have left now are responsibilities that I carry out with love and gratitude.
What a beautifully written reply. This has really touched me.
This is deeply moving, Sam. You are a loving human, and there is not any higher form that humanity can take.
Dear Hanif, I don’t blame you for being apprehensive. Anyone would be in your situation. I found myself in a similar situation when I went from being mobile with a prosthetic leg and multisystem disease to being wheelchair dependent this year.
My advice would be to stay calm and live in the present while making provisions for the future. I am familiar with the ‘cauldron of worry’, but the more time you spend stirring the contents of the pot and mulling over them, the more the stew of anxiety will develop. I am a great fan of pragmatic approaches such as lists. They help you feel as if you are keeping on top of things without becoming submerged.
The hospital will make arrangements for the carers and district nurses you need, but it’s essential that you write down in your phone or somewhere easily accessible the emergency phone numbers of every department of the council and private companies you will need to contact. This will help you feel in control, for example, if you receive a hospital appointment for a day and time when your carer is due to arrive.
I don’t know how similar things in England are to the way it works in Scotland, but In my emergency contact list, I have a number for the ambulance booking service which I need to get out to take me to every hospital appointment, since I’m in a wheelchair and live on the second floor of a block of flats with no lift. I also have written down my NHS number/CHI number because they will ask for it every time you phone. Then you need the number for the district nurses, which are often centrally based rather than being attached to a particular GP practice, and the number for your community occupational therapist department. There may also be a council department dealing with repairs required in the homes of disabled people. Although I had to pay to get my bathroom converted privately into a wet room compatible with a wheelchair, I did get some help from the council in terms of elevating the height of a futon so I could transfer on and off it more easily. They may also provide you cushions to raise the height of sofas et cetera.
You will no doubt need a hospital bed at home, and one with an air flow mattress to guard against pressure sores. Make sure this is in place before you are sent home, it is not worth risking pressure sores. I’ve had six this year, and they were agony.
Also, write down the number of the community physio who will be coming to visit you, and once they start visiting, you can communicate with them directly via text to arrange appointments et cetera.
You will be taken on a home visit by the occupational therapist to make sure that you can easily negotiate your area of the home with your wheelchair and transfer safely. I hope you are having grab rails installed in bedroom and bathroom. It’s very important to have one on each side of the shower so that you are safe on the shower seat.
Take things slowly. Please don’t plan to be able to get up, shower, sit in your chair, go to the shops, and get back to teaching immediately. Will you be able to teach via zoom? That would be far easier for you then having to go in physically. Make sure that the desk from which you will speak to your students is set up to make zoom comfortable and with everything you need to hand.
It is devastating to go through a life change. But thank goodness, you are a cerebral person rather than a sports fanatic. You will still be able to engage in all the intellectual activities you loved before. And you can gradually get back into travel and venturing out of the home, but don’t rush things. You want to be fully confident before you place yourself in any intimidating situations.
Don’t worry too much about other people and how they see you and speak to you. As with trolls on social media, the way they approach you says much more about them than about you. Try and remain calm.
I struggle a lot with impatience because I’m quick minded, but my body is in constant pain and very slow. I currently have bone infection in one hand and an ulcer in the thumb stump on the other so using my hands is very difficult. Added to being wheelchair-bound, this can make for a lot of frustration. Try to be kind to yourself, don’t berate yourself about your disabilities or place yourself in positions of danger by doing too much.
Make time for exercises with the physiotherapist. With you not being able to move at the moment, most of the movements will be passive, with the Physio, moving your limbs to try and stop contractures forming. But if, in time, there is anything you can do to try and strengthen any part of your body, which regains function, it’s worth spending time on it. Just because rewards are little, and slow to see, we shouldn’t lose hope.
Make sure that Isabella and the children have time to spend with friends when you have a carer present. They can’t take care of you unless they are healthy and happy themselves. They may be eligible for respite which would mean you coming into hospital for a week or so every year.
Try and concentrate not on what you can’t do any more, but on what you can do. Of course, you will have low periods psychologically - it’s only natural. I have found immense comfort in wonderful books, engrossing tv, and, most of all, the company of loved ones. Nowadays, you can practically reproduce a restaurant experience at home by getting food delivered - this might be easier than negotiating the busy streets to eat out. And keep writing. That is your lifeline.
Good luck.
Leyla x
So thoughtful and such good advice - pointing firmly to a successful future in constrained circumstances. Bless.
Good luck to you too, Leyla! You sound so kind and pragmatic.
Thank you so much :) x
How strange to read that at this same moment in time our family is facing the effects of a slow paralysis on our beloved sister to read of the effects of yours on those closest to you. I wish you all periods of joy and laughter in these turbulent seas; for us it is an education we hoped never to acquire and I would be willing to bet for you and yours too. Sending love, and grateful thanks for your writings.
I wish you the very best in your move back home, Hanif! I expect it will be more full of consolations than comparisons. And I have a feeling you will flourish and continue to astonish us with your clear-eyed look at the world around you and beyond you. Thank you for walking us through this year of shock and trauma and giving us all more heart! ❤️
Hope all goes well for your homecoming. I think in the end, you will be glad to be resuming some of the elements of a 'normal' life again. It is an achievement on so many people's part to get to this point within a year. Yes of course (as someone on this thread highlights), there are atrocities going on in the world and I'm sure when the time is right, you may address them, but for now, your personal struggle and the impact on people close to you are naturally and necessarily at the forefront of your concerns. Trepidation yes, but also perhaps some hopes of more freedom and choice. Inevitably things will change. Your concern and love for those who care for you will make a lot of difference. X
you had me at cauldron of worry
Me too!
Your cauldron of worry pales in comparisons to the killing fields of Gaza., you have ‘intent’ and ambition it will see you through . Good luck
Well you’re a very honest guy Hanif.don’t know how you have put up with a natural liar like me for so long. Very good piece. Much love and see you soon Nige
Dear Hanif,
Congratulations on reaching nineteen thousand subscribers. I am astonished that so many read your wisdom and filth and don't see fit to give you a 'like', but perhaps they read on other forums that don't allow it.
I'm afraid I have no disability yet to tell you about apart from a little arthritis; I'm reasonably fit and living in a privileged position in Aotearoa / NZ, but that might change as the rednecks have voted in a fascist government here.
My mind tells me I'm 30 years old, but my body says fuk off, you're 90 and it's closer to the truth so I go up the ladder once again to work on the solar and wonder if it might be the last time.
I have faith you'll work out your domestic situation and get the life you deserve.
Your writing is a treasure.
Kind regards,
Alan.
Married with a family, I have a lot of sympathy and concern for Isabella and your family. You're right. It must be a huge adjustment for them. So much work and worry! But what a wonderful development--going home. I remember when you so wanted to just be home and how distant it seemed. I, too, appreciate your honesty and openness about your experience. I hope to hear the good and the bad of your next chapter. I'm so glad you seem to be resuming your life as a writer engaged with the world--but a world that few of us rarely see or know about from the inside.
Hanif, I look forward to reading your blog like many others. I feel I share a common bond with you listening to your deepest worries, vulnerability and terrible inconveniences. I feel with you! One day I look forward to meeting you in person!
Dear Hanif, I look forward to every episode of your 'new' life. You explain your trials, tribulations, and fears, brilliantly. Might there, I wonder, be a job for you on TV or radio, or a newspaper column at the very least?
You write: "I dread my fantasies about what healthy and exciting lives they lead in their fit bodies." Thank you for this reminder! I was just lamenting that my present, fit body is not as appealing to men as it used to be. I look at younger women and imagine their exciting lives, even though I am in a wonderful marriage. And then I read about your life, which is an important corrective to my bleak and trivial thoughts. You continue to inspire and challenge me--and so many others.
I just came back from visiting a dear friend who was recently diagnosed with Alzheimer’s when I read your post, Hanif. As ever, you remake my thoughts on how we live and what we are. I’m so sorry that Isabella didn’t feel able to participate in the conversation you planned to make public. I long to know her. It is an astonishment how you are transparent to us in your writing. Thank you. I send my strongest praise to you.
Reading this, I think of my 92-year-old mother, who struggles to walk with a walker and lives with a full-time caretaker and suffers from "age-related cognitive decline" which doesn't differ much from other types of senility or dementia in terms of effect. The difference for you of course is you arrived at this state suddenly rather than gradually and your brain is still functioning close to the top of its game. But its a situation we're all going to end up in one day. So difficult to try to contemplate it all in one go! No wonder you're awash in a cauldron of worry.
“Temporarily Abled” -- a term for the nondisabled coined by disability activists