I have read your chronicles for a few months now and although you invited people to respond to you I never did . I am not a writer and although I was interested to read what you said I had nothing to say myself.
6 weeks ago I slipped walking down a slope to a parking garage in Milan and sprained my ankle and subsequently badly broke my ankle in three places. I was on my way to see my solo show , I am a painter , which I never saw. Instead my friend drove me to hospital where they gave me a cast and said I needed surgery. Two days later my gallery arranged wheelchair , taxis, three seat in the plane to fly me back to London where on arrival at Gatwick I told the driver to bring me to Chelsea and Westminster hospital A&E. Ion arrival I stated that I lived in a basement , am old, live alone and could not go home and I needed them to give me a bed. They saw the fracture was serious and they took me in. Since then I had surgery and then they moved me to a nursing home where I have been since. Unable to move, the only independent movement is a swing from my bed into a commode and back again.
All my life I have been highly independent and this has been a real shock to me.
It looks like I will be in this immobile to slight mobile state for several months about which I was quite stoic till now. Today I was at once fucking fed up being imprisoned like this and want to get out of here. With some kind of care package and walking racks, commode etc and with help of friends I will have to find a way to manage. Of course this is nothing as seriously life changing as what has happened to you and although I have found myself in many tricky situations in life I have never had such a big loss of independence .
I know how you feel. At aged 72 I developed a problem with balance, possibly related to going nearly deaf in one ear. I can’t even stand up without holding on to something. I can barely walk, just a bit with a walker. I could no longer cook or bathe. Eventually I ended up in what’s called long term care, here in BC, Canada.
I lived alone, my kids in other cities.
In my institution most of the people have dementia.
The Dr here made me an appointment to check my ear but I cancelled it because I couldn’t get there alone in a wheelchair. I was still paying for my apartment and was too broke to hire someone to take me.
Of all the various things I thought might happen to me, I never thought of this.
With luck you’ll make full recovery. Best of luck.
You must do something with your apartment so you can go to an eat doc to see what can be done to correct your ear/ balance trouble . Don’t give in or give up yet
Best wishes to you. Unfortunately such situations are far more common than we imagine when we are in our prime. I'm glad you found Hanif's blog- it's encouraging to hear how he handles this, even when it's so hard. It's not so much that misery loves company, but more like singing the blues. Lifts the spirits to say how it really is.
Hi Marcella I follow you on Instagram as a fellow artist because I love your artwork - I find it fierce, frank and fearless. I’m so sorry to hear of your accident I hope you recover well and can get back to your fantastic work, you’re a master draftswoman and a force of nature I reckon xx
Our society is so grounded in individualism, competitiveness, and eternal youth that it does not tolerate dependency. We have all been, and will be at some point, dependent on someone. We are social beings and we do not want to admit that if this interdependence fails, we will be unhappy, no matter how many individual achievements we attain. Thank you for this lesson in humility and literature. The best storytellers I have known could barely read or write...
Such a wonderful portrait of the woman who cares for you and the complex relationship of being looked after. I'm grateful for your perspective as it helps me understand my father's distress when, many years ago, when he was deep in the throes of early onset Alzheimer's, he had a fraught relationship with a woman he called "Helen the Melon." She was, from our point of view, an excellent carer, but for him, as he saw the shape of his independence becoming ever smaller, she was an impediment and the bearer of date and kale "brain shakes," and forced marches around the neighborhood. Sending my best to you both.
The clarity of your writing astounds me as I see your caretaker wheeling you to the cafe after she has performed all the intimate personal details that help you to live. Her agency and your dependency are so perfectly expressed. I admire your determination and courage.
What a strange and difficult situation. Thank you for your dark but occasionally humorous description. I have a great image of your carer demonstrating how to pin down an angry murderer in my head! Sad to read the words 'unless you were lucky enough to have never been born' though... Tiens bon as we say here in France
Such a beautifully vulnerable and honest piece of writing. I was particularly struck by your thoughts on how your carer(s) know everything about you, it seems, and yet you know so little about them. It's something I've always found so strange when I've had therapists in the past because most real world relationships flourish through reciprocity: I share something with you, then you share something with me etc. But in recent years I've come to the conclusion that, as long as there is an exchange of sorts, it is reciprocal, even if you are exchanging very different things. Energy, hope, truth, inspiration, love - there are so many things that go beyond conversation and the sharing of facts about oneself. And we don't always get to know what other people get from us. Sometimes it's so much more than we think. x
As always Hanif , I want to hear about what you can do now physically that you couldn't do a few months ago. ? I was very moved by your last blog about loss of agency. When I read these things I then sometimes feel guilty about my own problems which are only life's problems that we all experience. Feel selfish and petty because in comparison to yours, my issues aren't problems.at all .....I feel privileged to be a tiny part of this community. Much love, Jane xx
You wrote v insightfully about how hard it is to accept physical care from strangers in your hospital blog. A body once known well only to lovers now an object of "work ". Now at home that loss of autonomy is greater as social and family life lose privacy. You are right : no guidelines and each finds their own way I guess .Tough. Sounds like you are all adapting though. Thank you for yet again thought- provoking writing.
Recovering from the effects of lobar pneumonia, I also have chronic asthma and arthritis. My caregiver has age related cognitive problems and is recovering from cancer. Our relationship is reciprocal, but today we had conflict. I felt dizzy from his unvented use of a propane stove. He opened the door for me so I could get fresh air, which resolved my problem. He thinks I complain too much and quoted a Bible verse about a contentious woman. I had to cut off communication for a while after that. Never did I think my old age would become so hideous. What fun and freedom I had as a young person! Everything in perspective though, I chant for your happiness Hanif! You remain my hero and role model.
Dear Hanif long time I did not write to you! It is such good reading ! And the topic of carer is very familiar- I do hope you are able to do the rehab as part of your effort to aim for maximum recovery. Your telling about the role in your daily life of the carer resonates even if I do not have a person living in.
Looking forward to the book about your time in Rome and London hospitals! All the best Willem
There's no such thing as privacy after you have children. I mean there is - but you have to seek it. What must be hard for you is that, as hard as you look, it is - at the moment anyway - as far away from you as being able to walk. See you soon my friend. Much love fomo Nige
Hanif - I have a C6 injury and needed a live in carer for about 6 years. I recognize everything you talk about. It's terribly hard. I wanted to give you some hope though. I now only use carers morning and evening or for driving me places. My carers live elsewhere and drive to me every morning. I can empty my own leg bag, and I know people with higher level injuries who can do so also - electroic devices are available. I love my carers - we have a professional barrier but I treat them well and eventually one's mood improves and the relationships can become professional but very mutually caring. Things never stay the same forever with spinal injury - you learn ways to adapt to improve things.
Btw this made me laugh out loud: "This is of course most people’s fate, unless you were lucky enough to have never been born"
The comments of your carer on the Royals who are « only human beings like us » reminded me of the famous words of Montaigne « No matter how high you are placed, you only ever sit on your ass ». It’s funny to imagine her demonstrating her restraint skills on your sons but I share your doubts on teeshirts announcing one’s devotion to God, seriously 🤔
I have read your chronicles for a few months now and although you invited people to respond to you I never did . I am not a writer and although I was interested to read what you said I had nothing to say myself.
6 weeks ago I slipped walking down a slope to a parking garage in Milan and sprained my ankle and subsequently badly broke my ankle in three places. I was on my way to see my solo show , I am a painter , which I never saw. Instead my friend drove me to hospital where they gave me a cast and said I needed surgery. Two days later my gallery arranged wheelchair , taxis, three seat in the plane to fly me back to London where on arrival at Gatwick I told the driver to bring me to Chelsea and Westminster hospital A&E. Ion arrival I stated that I lived in a basement , am old, live alone and could not go home and I needed them to give me a bed. They saw the fracture was serious and they took me in. Since then I had surgery and then they moved me to a nursing home where I have been since. Unable to move, the only independent movement is a swing from my bed into a commode and back again.
All my life I have been highly independent and this has been a real shock to me.
It looks like I will be in this immobile to slight mobile state for several months about which I was quite stoic till now. Today I was at once fucking fed up being imprisoned like this and want to get out of here. With some kind of care package and walking racks, commode etc and with help of friends I will have to find a way to manage. Of course this is nothing as seriously life changing as what has happened to you and although I have found myself in many tricky situations in life I have never had such a big loss of independence .
Definitely a learning curve
Warmest regards
Marcelle Hanselaar
I know how you feel. At aged 72 I developed a problem with balance, possibly related to going nearly deaf in one ear. I can’t even stand up without holding on to something. I can barely walk, just a bit with a walker. I could no longer cook or bathe. Eventually I ended up in what’s called long term care, here in BC, Canada.
I lived alone, my kids in other cities.
In my institution most of the people have dementia.
The Dr here made me an appointment to check my ear but I cancelled it because I couldn’t get there alone in a wheelchair. I was still paying for my apartment and was too broke to hire someone to take me.
Of all the various things I thought might happen to me, I never thought of this.
With luck you’ll make full recovery. Best of luck.
You must do something with your apartment so you can go to an eat doc to see what can be done to correct your ear/ balance trouble . Don’t give in or give up yet
I’m in an institution now. They do the cooking and help me shower.
But I will try to get another appointment to figure out what’s wrong. Perhaps something can be done. Thanks for your concern.
Please do get a second opinion . You are too young and independent for an institution. Wishing you well
Best wishes to you. Unfortunately such situations are far more common than we imagine when we are in our prime. I'm glad you found Hanif's blog- it's encouraging to hear how he handles this, even when it's so hard. It's not so much that misery loves company, but more like singing the blues. Lifts the spirits to say how it really is.
It's only now that I get a tiny understanding of what Hanif is going through.
I found that after reading his writing very moving . It helps me.
Hi Marcella I follow you on Instagram as a fellow artist because I love your artwork - I find it fierce, frank and fearless. I’m so sorry to hear of your accident I hope you recover well and can get back to your fantastic work, you’re a master draftswoman and a force of nature I reckon xx
That’s very kind, thank you for your good wishes . I will walk again and paint again it will take awhile .
Time will heal. Just don’t roll your ankles again, as I did after surgery. All the best.
Thank you, I hope not but it partly happened because I had twisted my ankle 2 month before so it's structure was weak
Our society is so grounded in individualism, competitiveness, and eternal youth that it does not tolerate dependency. We have all been, and will be at some point, dependent on someone. We are social beings and we do not want to admit that if this interdependence fails, we will be unhappy, no matter how many individual achievements we attain. Thank you for this lesson in humility and literature. The best storytellers I have known could barely read or write...
Such a wonderful portrait of the woman who cares for you and the complex relationship of being looked after. I'm grateful for your perspective as it helps me understand my father's distress when, many years ago, when he was deep in the throes of early onset Alzheimer's, he had a fraught relationship with a woman he called "Helen the Melon." She was, from our point of view, an excellent carer, but for him, as he saw the shape of his independence becoming ever smaller, she was an impediment and the bearer of date and kale "brain shakes," and forced marches around the neighborhood. Sending my best to you both.
The clarity of your writing astounds me as I see your caretaker wheeling you to the cafe after she has performed all the intimate personal details that help you to live. Her agency and your dependency are so perfectly expressed. I admire your determination and courage.
What a strange and difficult situation. Thank you for your dark but occasionally humorous description. I have a great image of your carer demonstrating how to pin down an angry murderer in my head! Sad to read the words 'unless you were lucky enough to have never been born' though... Tiens bon as we say here in France
Such a beautifully vulnerable and honest piece of writing. I was particularly struck by your thoughts on how your carer(s) know everything about you, it seems, and yet you know so little about them. It's something I've always found so strange when I've had therapists in the past because most real world relationships flourish through reciprocity: I share something with you, then you share something with me etc. But in recent years I've come to the conclusion that, as long as there is an exchange of sorts, it is reciprocal, even if you are exchanging very different things. Energy, hope, truth, inspiration, love - there are so many things that go beyond conversation and the sharing of facts about oneself. And we don't always get to know what other people get from us. Sometimes it's so much more than we think. x
As always Hanif , I want to hear about what you can do now physically that you couldn't do a few months ago. ? I was very moved by your last blog about loss of agency. When I read these things I then sometimes feel guilty about my own problems which are only life's problems that we all experience. Feel selfish and petty because in comparison to yours, my issues aren't problems.at all .....I feel privileged to be a tiny part of this community. Much love, Jane xx
You wrote v insightfully about how hard it is to accept physical care from strangers in your hospital blog. A body once known well only to lovers now an object of "work ". Now at home that loss of autonomy is greater as social and family life lose privacy. You are right : no guidelines and each finds their own way I guess .Tough. Sounds like you are all adapting though. Thank you for yet again thought- provoking writing.
Recovering from the effects of lobar pneumonia, I also have chronic asthma and arthritis. My caregiver has age related cognitive problems and is recovering from cancer. Our relationship is reciprocal, but today we had conflict. I felt dizzy from his unvented use of a propane stove. He opened the door for me so I could get fresh air, which resolved my problem. He thinks I complain too much and quoted a Bible verse about a contentious woman. I had to cut off communication for a while after that. Never did I think my old age would become so hideous. What fun and freedom I had as a young person! Everything in perspective though, I chant for your happiness Hanif! You remain my hero and role model.
An Unhappy Compromise
"You should compromise a bit", did I really just hear you say?
You mean on top of all those other ones that I make every day!?
From having to fake that 'all is well' when eyelids first unfurl,
Whereas you do not partake in that, bringing misery to my world.
Or every day reminding you, what it is your job entails,
So your role I'm part performing, whilst ignoring all your fails.
When considering your reaction to, virtually any choice I make,
What clothes I wear, what food I eat, whatever path I take.
And saying that I'm sorry, after most things that I ask,
Although prior to each assessing; a necessary task?
Being sensitive to your triggers, when you make them known,
You riding roughshod over mine, in what becomes a gaslight zone.
When I feel I must self-edit, pretty much all the time,
Whereas you feel okay saying, well, whatever comes to mind.
You practically assault me, and although I make it known,
You always have an excuse, with which it to condone.
I want to say "JUST FUCK THE FUCK OFF!", but ultimately don't,
Because I worry that you will, whilst fearing that you won't.
And if I develop feelings, heaven forbid they be expressed,
Ignoring that I'm human, is what we both feel's for the best.
Now it seems to me that telling you this, is somewhat a surprise,
But pray do tell me once again, what should I compromise?
https://www.youtube.com/watch?v=6Z83peP9ziA
Dear Hanif long time I did not write to you! It is such good reading ! And the topic of carer is very familiar- I do hope you are able to do the rehab as part of your effort to aim for maximum recovery. Your telling about the role in your daily life of the carer resonates even if I do not have a person living in.
Looking forward to the book about your time in Rome and London hospitals! All the best Willem
There's no such thing as privacy after you have children. I mean there is - but you have to seek it. What must be hard for you is that, as hard as you look, it is - at the moment anyway - as far away from you as being able to walk. See you soon my friend. Much love fomo Nige
We teach our children to be independent and then we have to learn how to depend on others
Hanif - I have a C6 injury and needed a live in carer for about 6 years. I recognize everything you talk about. It's terribly hard. I wanted to give you some hope though. I now only use carers morning and evening or for driving me places. My carers live elsewhere and drive to me every morning. I can empty my own leg bag, and I know people with higher level injuries who can do so also - electroic devices are available. I love my carers - we have a professional barrier but I treat them well and eventually one's mood improves and the relationships can become professional but very mutually caring. Things never stay the same forever with spinal injury - you learn ways to adapt to improve things.
Btw this made me laugh out loud: "This is of course most people’s fate, unless you were lucky enough to have never been born"
The comments of your carer on the Royals who are « only human beings like us » reminded me of the famous words of Montaigne « No matter how high you are placed, you only ever sit on your ass ». It’s funny to imagine her demonstrating her restraint skills on your sons but I share your doubts on teeshirts announcing one’s devotion to God, seriously 🤔
You writing kills me, but in a good way.
I forgot to say - what a good piece! You are essential reading my friend!