When I first got permanently sick, a very strange thing happened.
Some of my friends rallied round and expressed their support. I am grateful for that, as I am not very good at asking for help. They would tell me they had looked up my condition on Wikipedia, and they would make allowances for me, and keep an eye on me over stretches of bad days and weeks.
Then there were other people to whom I was close, who in the wake hearing my diagnosis drifted away, and who I haven't spoken to since. I took it personally at the time, and I suppose that it is personal when somebody picks one of your darkest moments to severe a mutual friendship.
In time, I learned to let them go and not to ponder too much upon their whys and wherefores. I know there some people who do not like to be around others who are sick. It unsettles them. Perhaps it unearths bad memories. I sympathise up to a point. Having had two friends suffer unpleasant deaths (one violent) as a result of alcohol abuse, I find it difficult to be around others who are engaged in their own struggle with substance addiction. I want to be supportive, and know that I should be, but it is hard for me.
In other cases I have come to accept that maybe these fading friendships were less robust, or otherwise more precariously weakened than I thought they were. The beginning of a new chapter in my life was all the impetus that was needed for these people to call time, in the same way that you can put down a book at the end of a chapter and never feel the urge to pick it up again.
My indirect experience of patients who have been in long-term rehab and who have subsequently returned to their homes is that, in many cases, they improve dramatically. It makes sense that, having been ensconced in the artificial environment of a hospital, a return to a familiar setting, albeit changed by your long absence, allows you to rejoin the life that you left behind and better define your future. The ongoing presence of friends and family seems to have a bolstering impact upon post-inpatient recovery.
On the other side of the coin, it marks the point where life begins again. Where you have to make some kind of peace with your condition and work inside such constraints, while at the same time gently pushing against these boundaries.
As with all things in life, it helps to be both optimistic and realistic. There is a somewhat controversial, but very well-liked, and at heart honourable and decent, Internet personality, who is terminally ill. Nobody knows the cause. Everything that can go wrong with a human body seems to be happening to him at once. There appears to be no hope and it seems now that the end is approaching.
Despite his failing body, I have never encountered a more cheerful human being, and I have worked around some very upbeat stage-four cancer patients. Recently, he garnered reams of pleasure from putting up outdoor Halloween decorations over a month early, and then tormenting another controversial Internet personality who took umbrage at this premature celebration of the season, even monetising the rage of his critic and sinking the profits into additional candy and raffle prizes for the trick or treaters in his neighbourhood.
Whenever I find myself low in mood, I think of that man and his upbeat attitude to life in the face of a slow and unpleasant death. By the end of 2024, if not this year, he will gone. There are plans, that I hope will come to fruition, to cremate his body, and turn it into fertiliser that will be used to grow potatoes, that, in turn, will be distilled to make vodka.
I had severe ME and have gradually improved over the years. Your observations about friends, optimism and realism is correct. I began to create little strategies for myself that would make me feel good or, at least, laugh. Some were out and out lies. One of my first was to look in the mirror and say "you look fantastic today!" I looked like shit, of course, but I made myself laugh and that gave me a little boost. Recovery is full of little boosts like that. I'm happy to tell you that from needing a wheelchair, I now go bodyboarding.
Going home is always good. Your writing voice always sounds so strong and wholesome. That voice is sending the vibrations to your physical body slowly but surely looking for synchronisation. I always look forward to reading your observations and stories . You are loved by many
There is a theme in all that I am thinking these days that corresponds to what you have written here: people have so much to say! The avalanche of confession you have witnessed, been partly buried under, heard is overwhelming. We have an overwhelming need to tell someone what we have experienced, the terrible things we have seen, done, been a part of- and who can be the recipient of all of this? People tell me to write a book and I have always said, " there are already too many books, " but my emails are full of what you describe here. I write the terror of my life to my friends, some kind enough to say, as my therapist once did, "I enjoy your stories," but I tend to believe now that this is the function of the religious confessional, and the practices that guide us to examine and come to terms with our life and times on our own, as solitary beings joined in experience of life with everyone else, basically incapable of handling the awesome detail of our lives without some kind of acknowledgement and communion. We are all alone- and yet we are all together. The storytelling mind is inherently a big part of our humanity. Way back when my husband and I were living at his college together, a poet friend of mine said he was trying to get away from Story. This stayed with me (though he vanished- does anyone know a Phil Dicker?) and over the years I ponder what our need to make a story of our lives is worth. I wonder if it inherently creates value from suffering, gives meaning where otherwise there would be none. We entertain ourselves with infinite stories- but the stories that get told in the night by the people you mention sound far more real, and more horrifying, more gut-wrenching than the processed versions we see on Netflix. What are we looking for? I think we are looking for something bonding, something that tells it like it is but does not force us to accept despair. Something real, something gritty but full of life, something with all our disappointments, reeking of love.
There are more books already than anyone can read. But when I turn my mind around I think, every person should have at least one book on the shelf, a book about their life. There should be a library devoted to these books. We could walk in and pull down the book about the neighbor two doors down and find out where they come from, what tragedies or triumphs they've experienced, a few of their opinions, who they love. Suddenly a library like that seems so simple. A book for each of us. And then another.
Fantastic thoughts here thank you, not sure if it’s an age thing but I’ve been thinking the same - who to tell the stories of our life, who is interested, the need to bear witness etc I guess that’s why people have therapists for years or, as you say, go to confession. Or, as in my case, as a visual artist use it all as raw material for my work
You have made this treacherous mental life you now lead into art. I read each post with avid interest. When I hear you describe the nurse and your arse, I laugh and then I wonder at your candid exposure of your situation, grateful that you leave not one thing out. No one has ever written this way about paralysis. My mom was paralyzed for the last five years of her life after a vibrant seventy years. She found her way to the joys of the situation. Only you have put in writing what I shared with her spectacular mind. Thank you, thank you.
I hope you are sitting on a water cushion, Hanif. Hospitals and specialised shops like to recommend fancy and expensive antidecubitus cushions which in the end are not very good, you still need to lie down from time to time. With water cushions you can sit forever. They are very good. Then one day of course, after months and months, they might break and your carpet will get soaked, but it's worth it.
So much of what you have written here reminds me of my own experience after suffering a major stroke and being taken to an Oslo hospital - right down to the Kafka reflection, which I subsequently mentioned in a book about the experience. When I was searching around for a suitable quotation to have at the beginning I found this from Alphonse de Lamartine, a nineteenth century politician, which summed up how I felt at the time.
La vie doit avoir un courant, l’eau qui ne coule pas se corrompt
(Life should have a current, water which does not flow becomes stagnant).
The French ‘liquide’ is a prominent cultural symbol just as for the Asian, where the #1 (initiator) is associated with water and the #9 (conclusion) with fire. The West prizes ‘liquidity’ in finance, though it does caution about ‘liquidity trap’, while the East in its multi-millennial sophistication will picture Stagnation occupying a special spot immediately prior to Patience and Nourishment, themselves associated directly with #1 water also.
It is uncanny how Kafka's tale mirrors the experience of acute disability: from fear and shock, to sympathy, to irritation, to outright hostility - as the 'insect' becomes a burden the charitable impulse wears off!
I was in an orthopedic ward a while back, and my one abiding memory of it was how much the other patients cried. Most of them were older ladies, with very horrible or painful conditions such as open sores that wouldn't heal. The lady opposite me would weep very quietly because of her pain most evenings, but put on a cheerful face when she was visited. I spent a lot of time saying things like 'you don't seem very happy, Margorie, are you ok?' The most cheerful lady on the ward was terminally ill, the combination of her morphine and her headphones seemed to keep her quite content. I think a lot of people do want to talk when they are in hospital, to express their frustration, at their bodies, and also the endings that are now happening, whether the end of living at home, the end of controlling one's own bowels, or whatever it is that is grinding to a halt. I'm always surprised there isn't much talking at all, no time to hear any of this, the staff are rushing about and so it is the other patients that are the listeners, sometimes whether they like it or not. I was happy to listen, but sad to hear much of it. You will soon have more privacy back and in many ways that will be a blessing. Hannah x
It’s true - we especially take the opportunity to throw things off when we are distressed - whether in mind, body, or spirit. Like unburdening oneself, this is another facet of healing. Hey! we are saying as tossing things out. This is something else that I don’t need to carry around any more - let me tell you about it!
I am glad to hear you will be going home quite soon. I hope you will find the ideal balance of companionship and distance, both the joy of solitude in your own environment and company of family, friends and Isabella. Hopefully you will have good continued care for your physical needs. You have endured the last few months with great dignity and honesty - an inspiration to us all.
Good Luck Hanif. Home is where you'll get nourishment. Of all kinds. Not that you haven't had the best that the NHS can offer. But it's not home. I enjoy the posts from your various beds - your honesty cuts through. Reading about your anguish is brutally enlightening, both comic and tragic all at once. Wishing you an eventual recovery to something that resembles normality.
As you are finding, this new life, with all its horrors and frustrations, does bring new insight into the lives of others, exposing your whole belief system to an alternative reality.
Home will take some getting-used-to by all involved, but it will still be “home”, and as the saying goes, “there is no place like home”. Best of luck to you with getting there, and keep on writing! It sounds like you are indeed making good progress.
Being traumatized by the life stories of others is known in the mental health biz as vicarious traumatization. Lots of papers on it. It is a major cause of worker burn-out. Self care is now the big thing for mental health and other workers. Which includes making time for ourselves and setting strict limits and boundaries. You are a kind person Hanif, you need to let people know you need a break from all the drama, you need to heal. you have your own drama to cope with. Myself, I love any video with Chef Gordon Ramsey in it giving people the Hell I can't. He is my alter ego. Conversely I try to engage in deep meditation using Om chanting I pick up on YouTube. May you be blessed and healed! Rochelle
So true. I burned out this way as a journalist some years ago - too many harrowing stories and zero framework for professional support. The crunch was when an editor said “how’s our suicide correspondent”, intending to be jovial and not really wanting an answer.
I was quite a good journalist I think but I couldn’t do it any more.
Take a look at all the folks reporting on the knife-edges today and how they’re coping - from the wars to the inflation to the climate-induced emergencies … you may see that your editor had intuited something about the way the history was going … and of course about the state of journalism itself as a profession.
The captive patient - yes all those glimpses into other people’s lives - that happens in taxis a lot (very old friend is such) my worst journey was spent in a taxi from a ghastly industrial estate where my then head office was in Leeds getting me to the train station - I could bore you (more than you are) with the intensity and inappropriateness of it but won’t. I think people are generally in a mess can’t or don’t want therapy and use every available opportunity. It was great to look upon your face Hanif at the onset of this piece - have you counted the weeks - I know how many it is because my daughter is coming over from Helmond (netherlands) the day after - it is always such a beautiful drive going to pick her up. It will always be my favourite drive. Now unusually for me I refuse to tell you anything else / not the tv programme on in the background not my latest unrequited love not why I feel sad no none of that / I leave you with this thought about you going homeo - that someone in your life is longing for that December day with all their heart and the journey to get you. Just imagine that. Lots of love from one of your strangers in the tiny village in North Yorkshire Maddi x
When I first got permanently sick, a very strange thing happened.
Some of my friends rallied round and expressed their support. I am grateful for that, as I am not very good at asking for help. They would tell me they had looked up my condition on Wikipedia, and they would make allowances for me, and keep an eye on me over stretches of bad days and weeks.
Then there were other people to whom I was close, who in the wake hearing my diagnosis drifted away, and who I haven't spoken to since. I took it personally at the time, and I suppose that it is personal when somebody picks one of your darkest moments to severe a mutual friendship.
In time, I learned to let them go and not to ponder too much upon their whys and wherefores. I know there some people who do not like to be around others who are sick. It unsettles them. Perhaps it unearths bad memories. I sympathise up to a point. Having had two friends suffer unpleasant deaths (one violent) as a result of alcohol abuse, I find it difficult to be around others who are engaged in their own struggle with substance addiction. I want to be supportive, and know that I should be, but it is hard for me.
In other cases I have come to accept that maybe these fading friendships were less robust, or otherwise more precariously weakened than I thought they were. The beginning of a new chapter in my life was all the impetus that was needed for these people to call time, in the same way that you can put down a book at the end of a chapter and never feel the urge to pick it up again.
My indirect experience of patients who have been in long-term rehab and who have subsequently returned to their homes is that, in many cases, they improve dramatically. It makes sense that, having been ensconced in the artificial environment of a hospital, a return to a familiar setting, albeit changed by your long absence, allows you to rejoin the life that you left behind and better define your future. The ongoing presence of friends and family seems to have a bolstering impact upon post-inpatient recovery.
On the other side of the coin, it marks the point where life begins again. Where you have to make some kind of peace with your condition and work inside such constraints, while at the same time gently pushing against these boundaries.
As with all things in life, it helps to be both optimistic and realistic. There is a somewhat controversial, but very well-liked, and at heart honourable and decent, Internet personality, who is terminally ill. Nobody knows the cause. Everything that can go wrong with a human body seems to be happening to him at once. There appears to be no hope and it seems now that the end is approaching.
Despite his failing body, I have never encountered a more cheerful human being, and I have worked around some very upbeat stage-four cancer patients. Recently, he garnered reams of pleasure from putting up outdoor Halloween decorations over a month early, and then tormenting another controversial Internet personality who took umbrage at this premature celebration of the season, even monetising the rage of his critic and sinking the profits into additional candy and raffle prizes for the trick or treaters in his neighbourhood.
Whenever I find myself low in mood, I think of that man and his upbeat attitude to life in the face of a slow and unpleasant death. By the end of 2024, if not this year, he will gone. There are plans, that I hope will come to fruition, to cremate his body, and turn it into fertiliser that will be used to grow potatoes, that, in turn, will be distilled to make vodka.
I had severe ME and have gradually improved over the years. Your observations about friends, optimism and realism is correct. I began to create little strategies for myself that would make me feel good or, at least, laugh. Some were out and out lies. One of my first was to look in the mirror and say "you look fantastic today!" I looked like shit, of course, but I made myself laugh and that gave me a little boost. Recovery is full of little boosts like that. I'm happy to tell you that from needing a wheelchair, I now go bodyboarding.
Going home is always good. Your writing voice always sounds so strong and wholesome. That voice is sending the vibrations to your physical body slowly but surely looking for synchronisation. I always look forward to reading your observations and stories . You are loved by many
There is a theme in all that I am thinking these days that corresponds to what you have written here: people have so much to say! The avalanche of confession you have witnessed, been partly buried under, heard is overwhelming. We have an overwhelming need to tell someone what we have experienced, the terrible things we have seen, done, been a part of- and who can be the recipient of all of this? People tell me to write a book and I have always said, " there are already too many books, " but my emails are full of what you describe here. I write the terror of my life to my friends, some kind enough to say, as my therapist once did, "I enjoy your stories," but I tend to believe now that this is the function of the religious confessional, and the practices that guide us to examine and come to terms with our life and times on our own, as solitary beings joined in experience of life with everyone else, basically incapable of handling the awesome detail of our lives without some kind of acknowledgement and communion. We are all alone- and yet we are all together. The storytelling mind is inherently a big part of our humanity. Way back when my husband and I were living at his college together, a poet friend of mine said he was trying to get away from Story. This stayed with me (though he vanished- does anyone know a Phil Dicker?) and over the years I ponder what our need to make a story of our lives is worth. I wonder if it inherently creates value from suffering, gives meaning where otherwise there would be none. We entertain ourselves with infinite stories- but the stories that get told in the night by the people you mention sound far more real, and more horrifying, more gut-wrenching than the processed versions we see on Netflix. What are we looking for? I think we are looking for something bonding, something that tells it like it is but does not force us to accept despair. Something real, something gritty but full of life, something with all our disappointments, reeking of love.
There are more books already than anyone can read. But when I turn my mind around I think, every person should have at least one book on the shelf, a book about their life. There should be a library devoted to these books. We could walk in and pull down the book about the neighbor two doors down and find out where they come from, what tragedies or triumphs they've experienced, a few of their opinions, who they love. Suddenly a library like that seems so simple. A book for each of us. And then another.
Fantastic thoughts here thank you, not sure if it’s an age thing but I’ve been thinking the same - who to tell the stories of our life, who is interested, the need to bear witness etc I guess that’s why people have therapists for years or, as you say, go to confession. Or, as in my case, as a visual artist use it all as raw material for my work
It seems art is the answer. Wouldn't you say? Must be why we do it. I appreciate hearing your comment as well.
Art is the only answer. (Oh and Love.. but then, Art is an act of Love)
You have made this treacherous mental life you now lead into art. I read each post with avid interest. When I hear you describe the nurse and your arse, I laugh and then I wonder at your candid exposure of your situation, grateful that you leave not one thing out. No one has ever written this way about paralysis. My mom was paralyzed for the last five years of her life after a vibrant seventy years. She found her way to the joys of the situation. Only you have put in writing what I shared with her spectacular mind. Thank you, thank you.
I hope you are sitting on a water cushion, Hanif. Hospitals and specialised shops like to recommend fancy and expensive antidecubitus cushions which in the end are not very good, you still need to lie down from time to time. With water cushions you can sit forever. They are very good. Then one day of course, after months and months, they might break and your carpet will get soaked, but it's worth it.
Twenty minutes standing sounds great! What progress! Nothing to sneeze at. Keep at it Hanif!
So much of what you have written here reminds me of my own experience after suffering a major stroke and being taken to an Oslo hospital - right down to the Kafka reflection, which I subsequently mentioned in a book about the experience. When I was searching around for a suitable quotation to have at the beginning I found this from Alphonse de Lamartine, a nineteenth century politician, which summed up how I felt at the time.
La vie doit avoir un courant, l’eau qui ne coule pas se corrompt
(Life should have a current, water which does not flow becomes stagnant).
I used it as a theme through the book.
Best wishes for a happy return home
Eric
The French ‘liquide’ is a prominent cultural symbol just as for the Asian, where the #1 (initiator) is associated with water and the #9 (conclusion) with fire. The West prizes ‘liquidity’ in finance, though it does caution about ‘liquidity trap’, while the East in its multi-millennial sophistication will picture Stagnation occupying a special spot immediately prior to Patience and Nourishment, themselves associated directly with #1 water also.
It is uncanny how Kafka's tale mirrors the experience of acute disability: from fear and shock, to sympathy, to irritation, to outright hostility - as the 'insect' becomes a burden the charitable impulse wears off!
I was in an orthopedic ward a while back, and my one abiding memory of it was how much the other patients cried. Most of them were older ladies, with very horrible or painful conditions such as open sores that wouldn't heal. The lady opposite me would weep very quietly because of her pain most evenings, but put on a cheerful face when she was visited. I spent a lot of time saying things like 'you don't seem very happy, Margorie, are you ok?' The most cheerful lady on the ward was terminally ill, the combination of her morphine and her headphones seemed to keep her quite content. I think a lot of people do want to talk when they are in hospital, to express their frustration, at their bodies, and also the endings that are now happening, whether the end of living at home, the end of controlling one's own bowels, or whatever it is that is grinding to a halt. I'm always surprised there isn't much talking at all, no time to hear any of this, the staff are rushing about and so it is the other patients that are the listeners, sometimes whether they like it or not. I was happy to listen, but sad to hear much of it. You will soon have more privacy back and in many ways that will be a blessing. Hannah x
It’s true - we especially take the opportunity to throw things off when we are distressed - whether in mind, body, or spirit. Like unburdening oneself, this is another facet of healing. Hey! we are saying as tossing things out. This is something else that I don’t need to carry around any more - let me tell you about it!
I am glad to hear you will be going home quite soon. I hope you will find the ideal balance of companionship and distance, both the joy of solitude in your own environment and company of family, friends and Isabella. Hopefully you will have good continued care for your physical needs. You have endured the last few months with great dignity and honesty - an inspiration to us all.
Good Luck Hanif. Home is where you'll get nourishment. Of all kinds. Not that you haven't had the best that the NHS can offer. But it's not home. I enjoy the posts from your various beds - your honesty cuts through. Reading about your anguish is brutally enlightening, both comic and tragic all at once. Wishing you an eventual recovery to something that resembles normality.
As you are finding, this new life, with all its horrors and frustrations, does bring new insight into the lives of others, exposing your whole belief system to an alternative reality.
Home will take some getting-used-to by all involved, but it will still be “home”, and as the saying goes, “there is no place like home”. Best of luck to you with getting there, and keep on writing! It sounds like you are indeed making good progress.
Being traumatized by the life stories of others is known in the mental health biz as vicarious traumatization. Lots of papers on it. It is a major cause of worker burn-out. Self care is now the big thing for mental health and other workers. Which includes making time for ourselves and setting strict limits and boundaries. You are a kind person Hanif, you need to let people know you need a break from all the drama, you need to heal. you have your own drama to cope with. Myself, I love any video with Chef Gordon Ramsey in it giving people the Hell I can't. He is my alter ego. Conversely I try to engage in deep meditation using Om chanting I pick up on YouTube. May you be blessed and healed! Rochelle
So true. I burned out this way as a journalist some years ago - too many harrowing stories and zero framework for professional support. The crunch was when an editor said “how’s our suicide correspondent”, intending to be jovial and not really wanting an answer.
I was quite a good journalist I think but I couldn’t do it any more.
Take a look at all the folks reporting on the knife-edges today and how they’re coping - from the wars to the inflation to the climate-induced emergencies … you may see that your editor had intuited something about the way the history was going … and of course about the state of journalism itself as a profession.
1) Cautiously, I've seen situations that confirm Sam's observation that people often do much better when they're back at home.
2) You can stand for twenty minutes!
3) Is that a recent picture? Because it's a really good one!
The captive patient - yes all those glimpses into other people’s lives - that happens in taxis a lot (very old friend is such) my worst journey was spent in a taxi from a ghastly industrial estate where my then head office was in Leeds getting me to the train station - I could bore you (more than you are) with the intensity and inappropriateness of it but won’t. I think people are generally in a mess can’t or don’t want therapy and use every available opportunity. It was great to look upon your face Hanif at the onset of this piece - have you counted the weeks - I know how many it is because my daughter is coming over from Helmond (netherlands) the day after - it is always such a beautiful drive going to pick her up. It will always be my favourite drive. Now unusually for me I refuse to tell you anything else / not the tv programme on in the background not my latest unrequited love not why I feel sad no none of that / I leave you with this thought about you going homeo - that someone in your life is longing for that December day with all their heart and the journey to get you. Just imagine that. Lots of love from one of your strangers in the tiny village in North Yorkshire Maddi x