I kindly ask that if you have the means, it would be a great deal if you could support my writing by becoming a paid subscriber, and keep this show on the road. Numerous petty disputes with one of the head nurses about weather I can or cannot have the door to my room left open. I have claustrophobia and hate to feel trapped. She claims that I must keep it closed. It’s difficult for me to argue with her since I feel nauseous all the time and now very weak. I can only eat fruit and yoghourt. I have been nauseous since I arrived back in London which is a month now. I am feeling increasingly despairing and doctors have failed to solve it, I think it’s the mixtures of meds I’m on. I feel odd in my body since my temperature control appears to have broken. I try to force myself to eat but it’s difficult and the food tastes like cardboard. The only relief is the visits of my friends and family. Otherwise I feel like a prisoner here in a totally alien environment. There is a discharge from my wound where I had my catheter operation and there may be an infection. I am waiting to find out. No good news this time except that I may be moving on in the next few days where there is a better neurological facility.
Hi Hanif, I’ve been following your chronicles passively but felt the need to write now. My father was hospitalised for 10 months, and I attended his bedside a few times a week. He also had nausea — for a ridiculous length of time — until the pain management team reviewed his meds. Turns out he didn’t respond well to codeine and opiate derivatives. Please press your ward to ask for a review, especially if your eating isn’t approving. We nearly lost my father twice to sepsis / malnutrition so I hope your nutrition (and water) balance fall into line. My dad has been out for 7 years and is now still full of the usual rage, acclimatising to his wheelchair and driving my mother mad but we’re glad it’s all in the past (as your son says).
I’m telling you all this because things may seem awful right now but all this (horrible hospitalisation) too this shall pass :) x
I agree wholeheartedly with this. Also, moving between institutions can lead to a mishmash of meds, as new drugs are added to previous medicines, and interactions aren't always looked at closely. And if the ward won't review, have your loved ones take note of everything you're on, and review with an independent pharmacist/chemist. I'm crossing fingers and toes your move to a new facility helps, while reserving one finger for the hidebound door-closing nurse.
TY, and I wish I’d added the ‘moving institutions’ thing. The NHS is wonderful but ones care needs moderating by you and your family at all times during these times.
How you look back on it will doubtless be based on where you're at when you're doing the looking.
I've now lived almost half my life, in a numb, clumsy, alien body - even though that body is considered a 'miracle' because it recovered '95%' from total quadriplegia. 95% is definitely in the eye of the beholder. I'm 63. I was paralyzed at 32. I have myelomalacia, a degradation of the spinal cord from the original injury. It may progress so slowly that it doesn't affect me much (it is affecting me some), or it may turn me into someone with something quite like ALS, wherein I eventually can't even swallow, talk, breathe. There's no way of knowing.
What is pretty much guaranteed for anyone with a spinal injury, barring new medicines and therapies, is that we will have a harder time as we age. Even for the uninjured, by the time you're 85-90, only 25% of your spinal cord is still working. Considering that mine is damaged, and, through the miracle of neuroplasticity, already using redundant circuits, the possibilities for having trouble walking, controlling my bowels, etc. as I age are large.
And yet... here, at 63, with palpable issues and debilities stemming from my original injuries (brain as well as spinal) still remaining, and scary new signals coming from the myelomalacia, I still look at my accident, and my recovery from it, as 'an incredible gift in horrendous wrapping paper', or, as the first piece of music I wrote after being paralyzed (on piano, because it took me 9 years to be able to play guitar again, and many months before I could laboriously plink out single notes on a piano), was called, a "Beautiful Disaster".
My accident made me a better person. A grateful person. A deeper and more empathetic person. It also made me a deeply traumatized, sometimes very afraid person, one who micro-observes every slight change in sensation, coordination, spasticity, tonus, clonus, second by second. It's a double-edged sword, but I'm not sure I would undo it if I could.
Here's a poem about it, and about that nagging feeling that I somehow willed my misfortune into existence, in order to foment change, to kick me out of the orbit I was in (though, admittedly, this poem is more about the loss than the gain):
Sam, that’s quite a story. I’m so sorry that you suffered such a terrible accident and for the many years it’s taken you to recover your life. Your determination is inspiring. There’s so much joy still to be had.
Sam - your strength and determination in the face of such a tough time give those of us, inc Hanif of course, such insight into the power of perspective. My story has similarities and I have found that often seeing and doing things differently allows me still to engage in the parts of life I love - gigs, theatre, meeting friends - without causing untold payback for the following weeks x
Hanif, your lack of appetite and description of nausea and how the food tastes is exactly what i experienced with the strong chemo i had to take. Everyone—EVERYONE—knows that dope helps. I wrote that before, and received a reply that that is illegal in england. I am dumbfounded by that. I live in michigan, as you know, and it is legal here. Even before its legalization there was this possibility of doctors prescribing it. I wound up taking the prescription instead of gummies. They helped. I didn’t get a great appetite, and the problem of finding food i could tolerate remained. But it made a real difference, and i was able to correct the weight loss and start gaining, and eating. I hope the british bobbies are not reading this, but your friends could surely help out here!! It stops the nausea as well.
A footnote here. It takes about 3-4 hours for the marijuana to bring a positive change to the appetite….not like the effects in the old days. Once you get even a bit of appetite it changes the taste of the food, enables you to eat, really. Sorry about this amateur “doctor prescribing” bit. Just want to share my experience with you in the hopes that it might help.
Dear Hanif. i am so sorry to hear these things. I am a scientist and i would be happy to read about specific issues if you tell me what they are. i have found that science is usually many years ahead of medicine -- discovered when i myself was sick. if this would be useful, please contact me (and you can look me up too).
Hanif, This is Jon Robin (Robbie) Baitz, God knows you won't remember but we met once years ago at The Groucho. back in the early days. I am friends with Frears. I live in the states but one of my plays was on, (not memorably) in London. Anyway. I just wanted to send you the deepest hope for your repair and also for hope and even more hope. Clearly you are deeply loved. You are a dazzling, stellar writer, always have been, still are. Your voice has resonated with me since you began and continues to. I started a bit after you, and Samy & Rosy stunned me, made me realize the potential for the form to be messy and gorgeous and true, and feel handmade. So I just wanted you to know, for whatever it's worth, from a fellow writer -- you are seen and known.
Hanif, you are moving to a better place in a few days. this is good news. you will have a change of environment, and the carers there will be more attuned to your needs. and your friends and family will visit you and conversations will be had. And you will get better, and your spirits will improve, and so will your body, and your life will become fertile again as will your creativity, and you will know we are with you every step.
Dear Hanif, my prayers, my hopes and wishes for your immediate move to a new facility w new healers and long term support for your battered beautiful body are foremost in my thoughts now. CarolO from northern coastal Cal. Please keep trying to eat. A little as often as you can. Yes, meds often destroy tastebuds on our tongues.
I think your son is right, and you are right. These 'petty' disputes are exhausting for patients and take up a lot of time - and, believe me, I've observed a few just as a bystander and visitor to many hospitals. My father moved hospitals for recuperation after one of his strokes. The hospital lost his immaculate clothes and my mother found him in someone else's, an old tee shirt and a pair of corduroys with string for a belt. He was in a windowless ward and had also gained an infection in his eye that was only sorted out when he got home. My mother told me under no circumstances to complain. She was very elegant and it was very sad when she said to me after one visit that she was going to start dressing down because they don't like it if you look smart. It was disappointing for so many reasons not the least being that my father really loved to see my mother, his dancing partner in life, looking her best. I worried that if she didn't look herself that he would start to fret about her and feel worse. Your revenge is to live your interesting life with your interesting friends and family, who visit whatever the weather inside. Take heart. Keep fighting off life's flies.
You will not look back on this as an interesting time. You will look back on this as a nightmare if you get to look back on it at all. Your current state is dangerous to both your mental and physical health. I know your son may not be the right person to do this but someone has got to talk to the authorities at that place to get you better treatment. And you need to stop trying to accept your situation and start giving the hospital bureaucrats a hard time. It will make you feel better. Anger keeps us alive. Passivity kills. The person who said you need an advocate is right. Please please tell Isabella and Sachin that if they want you to live they have to speak up for you. I'm the lady on hospice. I'm only here because I'm so feisty. That's what they all tell me and it's true. Closed door indeed! I am furious for you.
A couple of thoughts which may or may not be useful. One is that from my experience, anyone in a hospital needs a good advocate, particularly if he or she or they are very ill. It is so hard to advocate for oneself, and it is also quite hard for most family members who are often overwhelmed or intimidated by the hospital 's rigid system or the doctors, or the nurses's bustle and hustle. Someone needs to call the attention of the supervisors when things are going awry. Maybe they are doing all they can, the medicines are all doing what they should, and not working against each other and you, the patient. But there is no way to be totally sure unless you have someone who can talk to the doctors on your behalf and make sure things are going as they ought to. I know it's not good to irritate the hospital staff - but make sure there is someone checking. It's a pretty important part of a hospital stay in many countries.
I am engaged in an ongoing conversation with my dear little chameleon, Frederic, who is named after Chopin, and who is being taken from me, a few small pieces at a time, by the tides of old age.
Our conversation is one of small gestures and offerings: You like to eat locusts. You like to perch on the windowsill of my room and watch the trees blowing in the wind, and perhaps also to cast a backward glance with one eye at my laboured attempts to instil the essence of physical fitness in my body, by way of a pair of cast-iron hand-weights that were left behind by the previous owner of this house.
Despite my best efforts to keep the conversation going, I can see that, in the coming days or weeks, Frederic will put his head down and close his eyes. Our dialogue with each other will end, and I will be left behind to make what sense I can of what comes after.
You occupy a different set of circumstances. You are not rail-roaded on an irrevocable downhill course. There is ground slightly upslope of you to be reclaimed. Hampering these efforts, currently, is the unfortunate reality that you are only in the general vicinity of the place where you need to be. I pray to whatever gods are still on speaking terms with me that you will soon be moved to a more appropriate care setting. I remain convinced that. if your mental health can be returned to an even keel, then your appetites in other areas of your life may slowly but surely return.
It is, I think, probably condescending to be told to keep your chin up by a man who can rise from his chair at will, or reach out to silence the Taylor Swift album that he is trying to like or, at very least, to understand why others like it. My only advice is that you focus on what positives there are and draw from them what strength you can. That would be the support of your family and friends who have rallied around you and who, even during their absence, have you periodically in their thoughts. Beside them are many strangers, like myself, who you have never met, and will never meet, but who wish you well. In the distant future, glittering like a diamond in the London skyline by daylight, and blazing like a beacon at night, your home awaits your return.
The most-likely cause of your fluctuations in body temperature would be an infection. The nurses need to get on top of that.
Ha, I was in hospital recently and had to fight to have the curtain closed. Rules.
My tip for nausea is a) anti-nausea drugs, there are stronger ones, ask for those and b) ice-cream, my granny lived on clotted cream ice-cream and milkshakes for two years.
Perception does change, but we know that does not ease the reality. Sending love and thanks for keeping us beside you in your writing. We are all with you.
Hi Hanif, I’ve been following your chronicles passively but felt the need to write now. My father was hospitalised for 10 months, and I attended his bedside a few times a week. He also had nausea — for a ridiculous length of time — until the pain management team reviewed his meds. Turns out he didn’t respond well to codeine and opiate derivatives. Please press your ward to ask for a review, especially if your eating isn’t approving. We nearly lost my father twice to sepsis / malnutrition so I hope your nutrition (and water) balance fall into line. My dad has been out for 7 years and is now still full of the usual rage, acclimatising to his wheelchair and driving my mother mad but we’re glad it’s all in the past (as your son says).
I’m telling you all this because things may seem awful right now but all this (horrible hospitalisation) too this shall pass :) x
I agree wholeheartedly with this. Also, moving between institutions can lead to a mishmash of meds, as new drugs are added to previous medicines, and interactions aren't always looked at closely. And if the ward won't review, have your loved ones take note of everything you're on, and review with an independent pharmacist/chemist. I'm crossing fingers and toes your move to a new facility helps, while reserving one finger for the hidebound door-closing nurse.
TY, and I wish I’d added the ‘moving institutions’ thing. The NHS is wonderful but ones care needs moderating by you and your family at all times during these times.
Great post...
How you look back on it will doubtless be based on where you're at when you're doing the looking.
I've now lived almost half my life, in a numb, clumsy, alien body - even though that body is considered a 'miracle' because it recovered '95%' from total quadriplegia. 95% is definitely in the eye of the beholder. I'm 63. I was paralyzed at 32. I have myelomalacia, a degradation of the spinal cord from the original injury. It may progress so slowly that it doesn't affect me much (it is affecting me some), or it may turn me into someone with something quite like ALS, wherein I eventually can't even swallow, talk, breathe. There's no way of knowing.
What is pretty much guaranteed for anyone with a spinal injury, barring new medicines and therapies, is that we will have a harder time as we age. Even for the uninjured, by the time you're 85-90, only 25% of your spinal cord is still working. Considering that mine is damaged, and, through the miracle of neuroplasticity, already using redundant circuits, the possibilities for having trouble walking, controlling my bowels, etc. as I age are large.
And yet... here, at 63, with palpable issues and debilities stemming from my original injuries (brain as well as spinal) still remaining, and scary new signals coming from the myelomalacia, I still look at my accident, and my recovery from it, as 'an incredible gift in horrendous wrapping paper', or, as the first piece of music I wrote after being paralyzed (on piano, because it took me 9 years to be able to play guitar again, and many months before I could laboriously plink out single notes on a piano), was called, a "Beautiful Disaster".
My accident made me a better person. A grateful person. A deeper and more empathetic person. It also made me a deeply traumatized, sometimes very afraid person, one who micro-observes every slight change in sensation, coordination, spasticity, tonus, clonus, second by second. It's a double-edged sword, but I'm not sure I would undo it if I could.
Here's a poem about it, and about that nagging feeling that I somehow willed my misfortune into existence, in order to foment change, to kick me out of the orbit I was in (though, admittedly, this poem is more about the loss than the gain):
Orienteering
Somehow I found a quiet place
In the midst of the Home Show
Pearl Jam slamming out one more song
To the exhausted elated faithful
The throng sang in unison
Thousands of voices lifted in
Post-modern hymn
Around the laser-lit campfire
Where had it all gone
My fervor for the power
Of the glory of slamming out chords
and blood on my guitar
I still miss that primal feeling
A stew of fear and desire
those long sweaty nights at CB's
nauseated with stage fright
Then lifted to the peak
My lungs shaken by my own strumming
My heart powering my rhythm
in arcane subdivisions of its own steady beating
Now the beats wander
all over my heart
starting and stopping in disunison
Lost in their maze of self construction
I still play
But I've lost the ground
Instead my hands forget
bereft in their new-found simplicity
Twenty six years ago
I lost the feel
and maps and compasses
replaced body-knowing
Twenty six years of orienteering
a foreign terrain
in a foreign vehicle
an alien home slowly becoming innate
No longer jumping on the bed
with my tiny kids
to Evenflow's
Sullen sacrament
Sitting instead
Old and tired and post-crippled
Beside my beautiful boy
Thirty years strong
At thirty I'd already lost my brother
And my father
Two years later
I'd lose myself
Become the progenitor
Of the numb carrier of
Mental and physical maps
That I am now
At thirty-two
I lost it all
died and reborn
as a better sadder person
One all too familiar with
The immense power of pain
And the dark gulf of the past
Lost in pulped memory centers
Watching the boys
Slam out another Golden Oldie
I was struck once again
By my rage at my loss
Rage that my youth
Was ripped away
Stolen so damn young
Taken away by accident
Or was it a decision
Did I allow it to happen
Will it to happen
Or was it always thus
Bless you Sam for being a hard ass who hangs in there. I hope you can pass that along to Hanif.
So much for stanzas, lol.
Sam, that’s quite a story. I’m so sorry that you suffered such a terrible accident and for the many years it’s taken you to recover your life. Your determination is inspiring. There’s so much joy still to be had.
Take care, sam.🙏♥️
Sam - your strength and determination in the face of such a tough time give those of us, inc Hanif of course, such insight into the power of perspective. My story has similarities and I have found that often seeing and doing things differently allows me still to engage in the parts of life I love - gigs, theatre, meeting friends - without causing untold payback for the following weeks x
Hanif, your lack of appetite and description of nausea and how the food tastes is exactly what i experienced with the strong chemo i had to take. Everyone—EVERYONE—knows that dope helps. I wrote that before, and received a reply that that is illegal in england. I am dumbfounded by that. I live in michigan, as you know, and it is legal here. Even before its legalization there was this possibility of doctors prescribing it. I wound up taking the prescription instead of gummies. They helped. I didn’t get a great appetite, and the problem of finding food i could tolerate remained. But it made a real difference, and i was able to correct the weight loss and start gaining, and eating. I hope the british bobbies are not reading this, but your friends could surely help out here!! It stops the nausea as well.
A footnote here. It takes about 3-4 hours for the marijuana to bring a positive change to the appetite….not like the effects in the old days. Once you get even a bit of appetite it changes the taste of the food, enables you to eat, really. Sorry about this amateur “doctor prescribing” bit. Just want to share my experience with you in the hopes that it might help.
I wonder if CBD oil might make any difference. it's totally legal and available everywhere...
Hear hear! Great for pain, relaxation, nausea and some recovery of appetite x
Dear Hanif. i am so sorry to hear these things. I am a scientist and i would be happy to read about specific issues if you tell me what they are. i have found that science is usually many years ahead of medicine -- discovered when i myself was sick. if this would be useful, please contact me (and you can look me up too).
susan mango
susan.mango at unibas dot ch
Great post...hope you can help him...I am worried about the standard medical mish mash of drugs approach...science being way ahead is hopeful..
Hanif, This is Jon Robin (Robbie) Baitz, God knows you won't remember but we met once years ago at The Groucho. back in the early days. I am friends with Frears. I live in the states but one of my plays was on, (not memorably) in London. Anyway. I just wanted to send you the deepest hope for your repair and also for hope and even more hope. Clearly you are deeply loved. You are a dazzling, stellar writer, always have been, still are. Your voice has resonated with me since you began and continues to. I started a bit after you, and Samy & Rosy stunned me, made me realize the potential for the form to be messy and gorgeous and true, and feel handmade. So I just wanted you to know, for whatever it's worth, from a fellow writer -- you are seen and known.
Love
Robbie Baitz
I wish you could go home. You would feel better immediately. Love Eleanor
Hanif, you are moving to a better place in a few days. this is good news. you will have a change of environment, and the carers there will be more attuned to your needs. and your friends and family will visit you and conversations will be had. And you will get better, and your spirits will improve, and so will your body, and your life will become fertile again as will your creativity, and you will know we are with you every step.
Dear Hanif, my prayers, my hopes and wishes for your immediate move to a new facility w new healers and long term support for your battered beautiful body are foremost in my thoughts now. CarolO from northern coastal Cal. Please keep trying to eat. A little as often as you can. Yes, meds often destroy tastebuds on our tongues.
My heart is with you dear man.
I think your son is right, and you are right. These 'petty' disputes are exhausting for patients and take up a lot of time - and, believe me, I've observed a few just as a bystander and visitor to many hospitals. My father moved hospitals for recuperation after one of his strokes. The hospital lost his immaculate clothes and my mother found him in someone else's, an old tee shirt and a pair of corduroys with string for a belt. He was in a windowless ward and had also gained an infection in his eye that was only sorted out when he got home. My mother told me under no circumstances to complain. She was very elegant and it was very sad when she said to me after one visit that she was going to start dressing down because they don't like it if you look smart. It was disappointing for so many reasons not the least being that my father really loved to see my mother, his dancing partner in life, looking her best. I worried that if she didn't look herself that he would start to fret about her and feel worse. Your revenge is to live your interesting life with your interesting friends and family, who visit whatever the weather inside. Take heart. Keep fighting off life's flies.
You will not look back on this as an interesting time. You will look back on this as a nightmare if you get to look back on it at all. Your current state is dangerous to both your mental and physical health. I know your son may not be the right person to do this but someone has got to talk to the authorities at that place to get you better treatment. And you need to stop trying to accept your situation and start giving the hospital bureaucrats a hard time. It will make you feel better. Anger keeps us alive. Passivity kills. The person who said you need an advocate is right. Please please tell Isabella and Sachin that if they want you to live they have to speak up for you. I'm the lady on hospice. I'm only here because I'm so feisty. That's what they all tell me and it's true. Closed door indeed! I am furious for you.
A couple of thoughts which may or may not be useful. One is that from my experience, anyone in a hospital needs a good advocate, particularly if he or she or they are very ill. It is so hard to advocate for oneself, and it is also quite hard for most family members who are often overwhelmed or intimidated by the hospital 's rigid system or the doctors, or the nurses's bustle and hustle. Someone needs to call the attention of the supervisors when things are going awry. Maybe they are doing all they can, the medicines are all doing what they should, and not working against each other and you, the patient. But there is no way to be totally sure unless you have someone who can talk to the doctors on your behalf and make sure things are going as they ought to. I know it's not good to irritate the hospital staff - but make sure there is someone checking. It's a pretty important part of a hospital stay in many countries.
YES A THOUSAND TIMES YES
I am engaged in an ongoing conversation with my dear little chameleon, Frederic, who is named after Chopin, and who is being taken from me, a few small pieces at a time, by the tides of old age.
Our conversation is one of small gestures and offerings: You like to eat locusts. You like to perch on the windowsill of my room and watch the trees blowing in the wind, and perhaps also to cast a backward glance with one eye at my laboured attempts to instil the essence of physical fitness in my body, by way of a pair of cast-iron hand-weights that were left behind by the previous owner of this house.
Despite my best efforts to keep the conversation going, I can see that, in the coming days or weeks, Frederic will put his head down and close his eyes. Our dialogue with each other will end, and I will be left behind to make what sense I can of what comes after.
You occupy a different set of circumstances. You are not rail-roaded on an irrevocable downhill course. There is ground slightly upslope of you to be reclaimed. Hampering these efforts, currently, is the unfortunate reality that you are only in the general vicinity of the place where you need to be. I pray to whatever gods are still on speaking terms with me that you will soon be moved to a more appropriate care setting. I remain convinced that. if your mental health can be returned to an even keel, then your appetites in other areas of your life may slowly but surely return.
It is, I think, probably condescending to be told to keep your chin up by a man who can rise from his chair at will, or reach out to silence the Taylor Swift album that he is trying to like or, at very least, to understand why others like it. My only advice is that you focus on what positives there are and draw from them what strength you can. That would be the support of your family and friends who have rallied around you and who, even during their absence, have you periodically in their thoughts. Beside them are many strangers, like myself, who you have never met, and will never meet, but who wish you well. In the distant future, glittering like a diamond in the London skyline by daylight, and blazing like a beacon at night, your home awaits your return.
The most-likely cause of your fluctuations in body temperature would be an infection. The nurses need to get on top of that.
Ha, I was in hospital recently and had to fight to have the curtain closed. Rules.
My tip for nausea is a) anti-nausea drugs, there are stronger ones, ask for those and b) ice-cream, my granny lived on clotted cream ice-cream and milkshakes for two years.
Hugs x
Hold steady! We love you, Hanif! You are an exceptional human being!
Dear Hanif,
Perception does change, but we know that does not ease the reality. Sending love and thanks for keeping us beside you in your writing. We are all with you.
Rachel xx
What lovely sons you have x