Dear Readers, my dispatches will always be free and open to everyone. I am unable to use my hands and I’m writing, via dictation, with the help of my family. If you could become a paid subscriber and support me, it’d mean so much. As if it hasn’t been difficult enough, we are now asked to change room again. It will be the third room I have shared since arriving here in mid-January. All the rooms are identical, painted light blue, with low ceilings and two beds side by side about six feet apart.
Dear Hanif, Thank you for keeping us updated. We are all here rooting for you and I believe you will be up walking again as you go through these therapies. The fact that they are giving you such therapies means they believe this too. One thought: have you had any acupuncture treatment? In Eastern medicine, they see issues of vertigo and fainting as imbalances in the flow of our internal energies. Western medicine doesn't acknowledge energy at all. We've had some excellent results from acupuncture in our family. Perhaps Isabella might bring an acupuncturist into the hospital to treat you? The treatments are painless, deeply relaxing and meditative so they can help with anxieties too. My Japanese acupuncturist has said that once the energy pathways are balanced again the progress is permanent. I really like Japanese acupuncture as they say with you the whole time and only use one needle and sometimes a little massage. Meanwhile, it's such good news that you are bunking in with the Maestro! Good company is good medicine! Please tell him that we are rooting for him too and expecting miracles all around. With love from across the planet. ~Cat B
Hanif, I had the feeling that I should write to you when I read one of your dispatches, one that I felt your hopelessness deeply. I love to read your words, and often can truly feel your feelings. This is not always comfortable. To explain why I feel your feelings I will write, briefly, about my own experience; I had a worm in my brain, it caused grand mal seizures (with the unexpected reality that I could no longer be alone outside of my home, and could never know if I would fall, convulse, stop breathing, and die.) This was for 6 years. Then, miraculously, I met a Cuban neurologist that correctly diagnosed me. I subsequently had a 6.5 hr awake craniotomy to remove her (her name was Tania the Bitch; not her scientific name--but mine.) I was awake during and after the surgery, and am cured of the seizures. Before, and even now, there has been so much confusion and uncertainty in my brain, and I better understand your thoughts because of my own. I want to offer you what I use now to quickly calm myself in these days; Youtube videos of breathing exercises for high blood pressure and stress. There are many, and many are 10 minutes or less. You can find one that speaks to you. They work for anxiety, fear, and lowering your BP in a quick and peaceful manner. Sending love and peace to you and your Isabella.
I used to work as a clerk on a neurological rehabilitation ward, in a large NHS hospital. The ward consisted of three bays, each with seven beds. Two of the bays were designated female and the other was male. This set-up was reversed on the adjoining acute neurological ward. On those rare occasions when we had far more patients of one gender than the other, the bays, rather like clown fish, would spontaneously change sex. This would result in a mass migration, undertaken piecemeal, along the main corridors of the wards, with the patients being moved in their beds, one at a time, like the blocks in a sliding puzzle, until everyone was where they should be. It took ages and caused a fair amount of upset. For obvious reasons, it was not done lightly.
Often, when a patient either left the ward, or was moved to a different bed-space within the ward, property would go missing. I ended up with a boxful of slippers and dressing gowns under my desk, with no earthly clue as to where they had come from. Occasionally one of the nurses, or healthcare assistants, would helpfully attach a note to an item that read 'lost property'.
There were five side-rooms on each ward. They were a double-edged sword for patients, who were granted their own personal space, but who could have it taken away from them at a moment's notice, if there was someone in greater need of privacy. In general the rooms were given to the dying, and to people with serious cognitive issues that made them unsuitable for the bays – such as the woman who pulled the head off a hand-knitted teddy bear. The bear had been donated to the ward by another patient, both as a gesture of thanks and as a symbol of their ability to knit again following their stroke. For a few minutes she had cradled it like a child. An uncharacteristic calm had descended upon her. Then it must have all become a bit too much. I purchased some wool in town and sewed the head back on during my lunch break.
Anyone tested who tested positive for MRSA was quarantined in a side-room. The bed managers would frequently attempt to get us to accept patients who had been in the hospital for a while, and who were due another MRSA test before they could be moved. They would 'overlook' it. On one occasion they tried to move an MRSA-positive patient into one of our bays, which is beyond the pale. Working on that ward I got really good at saying 'no' to some very intimidating people, who were quite willing to throw their weight around.
The bed managers were constantly attempting to make room elsewhere in the hospital by moving patients onto wards that had openings. These patients were known as outliers. They remained under the speciality care of the team on their ward of origin, even though they might now be located on the other side of the hospital. More often than I should have, I would walk over to one of these wards and inform one of the doctors that they had yet to visit their patient, whose family was now kicking up a fuss. I was an arsehole, but for a good cause. I am sure, when I departed the hospital, there were many people who were glad to see the back of me. I loved that job and I absolutely despised it.
Your carers are rightly not allowing you to relax. The first few weeks of rehab are really important. They are pushing you for your own good, but it places you on a continually shifting foundation where you can't really come to terms with your situation, because your situation is always changing. It requires a measure of blind faith. Do not fear the one small step into the Lokomat, despite the name which is reminiscent of a Doctor Who villain.
I wonder how you will eventually view the stressful and unsettled period of your life that you spent in hospital – whether you may even look back on it with a certain fondness.
The time that I spent sleeping rough in London was the lowest point in my life. It was interminable, undignified and occasionally violent. I miss it now and I don't know why.
Thank you for sharing your journey. You are courageous. We studied your book at university, 16 years ago for me. The book is on my shelf. The Buddha of Suburbia. The only book of yours I’ve read, sadly, but your name has never left my memory. Recently, through my writing journey I was immediately drawn to your substack.
Would you ever have thought your writing would be serving you in this way, now? How even in your pain, your gift is showing you a way. If you were not writing during his experience, I wonder how you would be getting on inside your mind there? Do you ever wonder this? I am sure your sharing here is helping people in ways you can’t imagine. Thank you for your courage; for showing up for yourself in the way you know best right now. Your humility meets our humanity.
Dear Hanif, The reason you started to write as a teenager, "someone out there would recognise me," is more true than ever today. Your readers recognize you because on some level, we are all trapped in our bodies, especially those of us who are getting old and infirm. Your case is much more extreme, of course, but we recognize ourselves in you. I applaud your courage for documenting your state so scrupulously (details, details!) and for letting us share in your recovery. This gives us all a boost.
It’s a hard road Hanif about which you write brilliantly. The walking machine sounds scary but if it gets you moving again then it sounds a good idea. Maybe imagining you are a robot might help. Thinking of you with love and hoping each exercise does help a bit. Love from Nige
Glad to know that the Maestro is with you, and that Miss S too, is around to add extra encouragement to Isabella's devotion and support. You have every right to feel angry and upset. I wonder if you ever got to see the hypnotherapist. Hugs and encouragement and love from Paris. Kathy xx
I write out of the same motivation you describe here... perhaps it can be said of most writers? A stage play I wrote for the NT studio featured a character suspended above the others - a metaphor for her psychological state. I was reminded of it when you mentioned being raised, Christ-like, to standing, the lights of the gym in your eyes. Interestingly, my play worked more powerfully when I adapted it for radio a few years later - sometimes visuals are better when left to an audience’s imagination. In the final act, the character is lowered to the stage to move among the other characters, rehabilitated xxx
Like the Marines said in Iraq: "embrace the suck." For you, Hanif, I think that means learning to love your walking machine. You won't get better until you can walk. You won't walk until you use the machine. About 15 years ago I was in a bad biking accident that broke both my legs, cracked my hip and sacrum, and nearly caused the amputation of one leg. I was hospitalized for 12 days. NOTHING compared to what you are going through. Each day I was made to stand. Incredibly painful! Worse than getting run over. And then I was put in a walker and I would try to make it to the door of the hospital room. More pain. Body covered in sweat. And each day I was made to "walk" a bit further. More pain. Felt sort of pointless at the time. But when I was told I could leave the hospital if I could make it to the elevator, I suddenly had a goal. I was out the door and back home the next day. And I hope you will be, too!
Geez what an experience. We humans are put through unimaginable trials in this life with no guarantee that we'll emerge from the other side. You cheated death with that fall, but was that a good thing? I'm sure you wonder sometimes. I can't give you blind encouragement about using the robot to walk. Or about anything. I'm 80 and my body is winding down. Recovery is a hell of a lot easier for a 39 year old than a 69 year old. Age makes everything infinitely harder. But people your age do recover from strokes and heart attacks and cancer and all kinds of other stuff. All I'd suggest is Klonopin. Helps a lot with anxiety. And ask for a motorized wheelchair so you can get around a little. Go outdoors and smell the air. Try to take pleasure in what you can. Glad you're rooming with a friend, but if that changes insist on a private room. It makes a huge difference in your ability to feel like an autonomous human being not just a body in a bed.
today I can comment - now this is like getting a present. Thank you Hanif. I was thinking yesterday (when I couldn't comment or maybe the day before) how are you? you are in your new and frightening world with new and frightening procedures.. on top of that, moving rooms. The last machine you on about, does sound like a machine too far. You will be like the Terminator inside it. You could have a red eye that sees through everyone. your frailty and your vulnerability are physical, your mind is so strong - it is ahead of this game. You will be frightened of a repeat episode - but in a very lesser and insignificant episode next to yours (so here comes one of mine) I had this or should I say am having this right now. The thing I didn't want a repeat of is back. sometimes you don't want to be right do you - anyway, now that it has arrived, the very thing I dreaded coming back, it is OK in fact I have a whole new perspective on it. so fucking what I said to myself. I can do this, sort it, it will be OK - I even did that thing of what else is going on in the world (even though we are the most important things in our world) and people a million times worse off except they are not me they are not you. so - you may indeed revisit one of the horrors but, you will deal with it you will. I love your writings from the room. Thank you Hanif. Until next time and give that machine big kiss from me too.X
It’s hard to imagine, even though you describe this so vividly, how it is for you, but can imagine, Hanif, through your writing - and like many others, am walking with you x
While these sudden room swaps seem discouraging to me, I am so glad to hear you are roomed with the Maestro now. I know nothing about any of this, other than what I read from you, but perhaps the room swaps are some crude attempt on their part to accustom you to changes?
I am claustrophobic, to which I attribute a concern that I won't be able to get out of a sticky situation. I have NO problem with SCUBA, where I should be most freaked because I rely on equipment at depth. However, put a large person or a cart between me and an airplane aisle and I completely panic, despite knowing that I am limber enough to crawl over either of them. Having just watched a video on the Lokomat I see it could inspire the same sense. Before strapping in, I would need someone I really loved and trusted who would promise to pull the plug and release me. No practical jokers allowed.
Your journey is your own. I'll be cheering you on for whatever pace you take on your road home.
Caro Hanif we met two weeks ago when I was doing my exercise in the Locomat. I used it for the first time some 2 years ago. It was an incredible experience as it allowed me to”walk” again. It fitted in an approach to have me walk again.
Each of us has their individual challenges linked to our goals. Mine was/is : I want to walk again!
Hope you can overcome dizziness so that you can be inspired by the Lokomat.
Dear Hanif, Thank you for keeping us updated. We are all here rooting for you and I believe you will be up walking again as you go through these therapies. The fact that they are giving you such therapies means they believe this too. One thought: have you had any acupuncture treatment? In Eastern medicine, they see issues of vertigo and fainting as imbalances in the flow of our internal energies. Western medicine doesn't acknowledge energy at all. We've had some excellent results from acupuncture in our family. Perhaps Isabella might bring an acupuncturist into the hospital to treat you? The treatments are painless, deeply relaxing and meditative so they can help with anxieties too. My Japanese acupuncturist has said that once the energy pathways are balanced again the progress is permanent. I really like Japanese acupuncture as they say with you the whole time and only use one needle and sometimes a little massage. Meanwhile, it's such good news that you are bunking in with the Maestro! Good company is good medicine! Please tell him that we are rooting for him too and expecting miracles all around. With love from across the planet. ~Cat B
Hanif, I had the feeling that I should write to you when I read one of your dispatches, one that I felt your hopelessness deeply. I love to read your words, and often can truly feel your feelings. This is not always comfortable. To explain why I feel your feelings I will write, briefly, about my own experience; I had a worm in my brain, it caused grand mal seizures (with the unexpected reality that I could no longer be alone outside of my home, and could never know if I would fall, convulse, stop breathing, and die.) This was for 6 years. Then, miraculously, I met a Cuban neurologist that correctly diagnosed me. I subsequently had a 6.5 hr awake craniotomy to remove her (her name was Tania the Bitch; not her scientific name--but mine.) I was awake during and after the surgery, and am cured of the seizures. Before, and even now, there has been so much confusion and uncertainty in my brain, and I better understand your thoughts because of my own. I want to offer you what I use now to quickly calm myself in these days; Youtube videos of breathing exercises for high blood pressure and stress. There are many, and many are 10 minutes or less. You can find one that speaks to you. They work for anxiety, fear, and lowering your BP in a quick and peaceful manner. Sending love and peace to you and your Isabella.
I used to work as a clerk on a neurological rehabilitation ward, in a large NHS hospital. The ward consisted of three bays, each with seven beds. Two of the bays were designated female and the other was male. This set-up was reversed on the adjoining acute neurological ward. On those rare occasions when we had far more patients of one gender than the other, the bays, rather like clown fish, would spontaneously change sex. This would result in a mass migration, undertaken piecemeal, along the main corridors of the wards, with the patients being moved in their beds, one at a time, like the blocks in a sliding puzzle, until everyone was where they should be. It took ages and caused a fair amount of upset. For obvious reasons, it was not done lightly.
Often, when a patient either left the ward, or was moved to a different bed-space within the ward, property would go missing. I ended up with a boxful of slippers and dressing gowns under my desk, with no earthly clue as to where they had come from. Occasionally one of the nurses, or healthcare assistants, would helpfully attach a note to an item that read 'lost property'.
There were five side-rooms on each ward. They were a double-edged sword for patients, who were granted their own personal space, but who could have it taken away from them at a moment's notice, if there was someone in greater need of privacy. In general the rooms were given to the dying, and to people with serious cognitive issues that made them unsuitable for the bays – such as the woman who pulled the head off a hand-knitted teddy bear. The bear had been donated to the ward by another patient, both as a gesture of thanks and as a symbol of their ability to knit again following their stroke. For a few minutes she had cradled it like a child. An uncharacteristic calm had descended upon her. Then it must have all become a bit too much. I purchased some wool in town and sewed the head back on during my lunch break.
Anyone tested who tested positive for MRSA was quarantined in a side-room. The bed managers would frequently attempt to get us to accept patients who had been in the hospital for a while, and who were due another MRSA test before they could be moved. They would 'overlook' it. On one occasion they tried to move an MRSA-positive patient into one of our bays, which is beyond the pale. Working on that ward I got really good at saying 'no' to some very intimidating people, who were quite willing to throw their weight around.
The bed managers were constantly attempting to make room elsewhere in the hospital by moving patients onto wards that had openings. These patients were known as outliers. They remained under the speciality care of the team on their ward of origin, even though they might now be located on the other side of the hospital. More often than I should have, I would walk over to one of these wards and inform one of the doctors that they had yet to visit their patient, whose family was now kicking up a fuss. I was an arsehole, but for a good cause. I am sure, when I departed the hospital, there were many people who were glad to see the back of me. I loved that job and I absolutely despised it.
Your carers are rightly not allowing you to relax. The first few weeks of rehab are really important. They are pushing you for your own good, but it places you on a continually shifting foundation where you can't really come to terms with your situation, because your situation is always changing. It requires a measure of blind faith. Do not fear the one small step into the Lokomat, despite the name which is reminiscent of a Doctor Who villain.
I wonder how you will eventually view the stressful and unsettled period of your life that you spent in hospital – whether you may even look back on it with a certain fondness.
The time that I spent sleeping rough in London was the lowest point in my life. It was interminable, undignified and occasionally violent. I miss it now and I don't know why.
Thank you for sharing your journey. You are courageous. We studied your book at university, 16 years ago for me. The book is on my shelf. The Buddha of Suburbia. The only book of yours I’ve read, sadly, but your name has never left my memory. Recently, through my writing journey I was immediately drawn to your substack.
Would you ever have thought your writing would be serving you in this way, now? How even in your pain, your gift is showing you a way. If you were not writing during his experience, I wonder how you would be getting on inside your mind there? Do you ever wonder this? I am sure your sharing here is helping people in ways you can’t imagine. Thank you for your courage; for showing up for yourself in the way you know best right now. Your humility meets our humanity.
Dear Hanif, The reason you started to write as a teenager, "someone out there would recognise me," is more true than ever today. Your readers recognize you because on some level, we are all trapped in our bodies, especially those of us who are getting old and infirm. Your case is much more extreme, of course, but we recognize ourselves in you. I applaud your courage for documenting your state so scrupulously (details, details!) and for letting us share in your recovery. This gives us all a boost.
It’s a hard road Hanif about which you write brilliantly. The walking machine sounds scary but if it gets you moving again then it sounds a good idea. Maybe imagining you are a robot might help. Thinking of you with love and hoping each exercise does help a bit. Love from Nige
Glad to know that the Maestro is with you, and that Miss S too, is around to add extra encouragement to Isabella's devotion and support. You have every right to feel angry and upset. I wonder if you ever got to see the hypnotherapist. Hugs and encouragement and love from Paris. Kathy xx
Read this aloud to my husband. We are stunned and sobered by your clear description of your reality in this moment. Your words are received and felt.
I write out of the same motivation you describe here... perhaps it can be said of most writers? A stage play I wrote for the NT studio featured a character suspended above the others - a metaphor for her psychological state. I was reminded of it when you mentioned being raised, Christ-like, to standing, the lights of the gym in your eyes. Interestingly, my play worked more powerfully when I adapted it for radio a few years later - sometimes visuals are better when left to an audience’s imagination. In the final act, the character is lowered to the stage to move among the other characters, rehabilitated xxx
Like the Marines said in Iraq: "embrace the suck." For you, Hanif, I think that means learning to love your walking machine. You won't get better until you can walk. You won't walk until you use the machine. About 15 years ago I was in a bad biking accident that broke both my legs, cracked my hip and sacrum, and nearly caused the amputation of one leg. I was hospitalized for 12 days. NOTHING compared to what you are going through. Each day I was made to stand. Incredibly painful! Worse than getting run over. And then I was put in a walker and I would try to make it to the door of the hospital room. More pain. Body covered in sweat. And each day I was made to "walk" a bit further. More pain. Felt sort of pointless at the time. But when I was told I could leave the hospital if I could make it to the elevator, I suddenly had a goal. I was out the door and back home the next day. And I hope you will be, too!
Geez what an experience. We humans are put through unimaginable trials in this life with no guarantee that we'll emerge from the other side. You cheated death with that fall, but was that a good thing? I'm sure you wonder sometimes. I can't give you blind encouragement about using the robot to walk. Or about anything. I'm 80 and my body is winding down. Recovery is a hell of a lot easier for a 39 year old than a 69 year old. Age makes everything infinitely harder. But people your age do recover from strokes and heart attacks and cancer and all kinds of other stuff. All I'd suggest is Klonopin. Helps a lot with anxiety. And ask for a motorized wheelchair so you can get around a little. Go outdoors and smell the air. Try to take pleasure in what you can. Glad you're rooming with a friend, but if that changes insist on a private room. It makes a huge difference in your ability to feel like an autonomous human being not just a body in a bed.
today I can comment - now this is like getting a present. Thank you Hanif. I was thinking yesterday (when I couldn't comment or maybe the day before) how are you? you are in your new and frightening world with new and frightening procedures.. on top of that, moving rooms. The last machine you on about, does sound like a machine too far. You will be like the Terminator inside it. You could have a red eye that sees through everyone. your frailty and your vulnerability are physical, your mind is so strong - it is ahead of this game. You will be frightened of a repeat episode - but in a very lesser and insignificant episode next to yours (so here comes one of mine) I had this or should I say am having this right now. The thing I didn't want a repeat of is back. sometimes you don't want to be right do you - anyway, now that it has arrived, the very thing I dreaded coming back, it is OK in fact I have a whole new perspective on it. so fucking what I said to myself. I can do this, sort it, it will be OK - I even did that thing of what else is going on in the world (even though we are the most important things in our world) and people a million times worse off except they are not me they are not you. so - you may indeed revisit one of the horrors but, you will deal with it you will. I love your writings from the room. Thank you Hanif. Until next time and give that machine big kiss from me too.X
Your bravery and courage inspires
It’s hard to imagine, even though you describe this so vividly, how it is for you, but can imagine, Hanif, through your writing - and like many others, am walking with you x
Dear Hanif,
While these sudden room swaps seem discouraging to me, I am so glad to hear you are roomed with the Maestro now. I know nothing about any of this, other than what I read from you, but perhaps the room swaps are some crude attempt on their part to accustom you to changes?
I am claustrophobic, to which I attribute a concern that I won't be able to get out of a sticky situation. I have NO problem with SCUBA, where I should be most freaked because I rely on equipment at depth. However, put a large person or a cart between me and an airplane aisle and I completely panic, despite knowing that I am limber enough to crawl over either of them. Having just watched a video on the Lokomat I see it could inspire the same sense. Before strapping in, I would need someone I really loved and trusted who would promise to pull the plug and release me. No practical jokers allowed.
Your journey is your own. I'll be cheering you on for whatever pace you take on your road home.
Caro Hanif we met two weeks ago when I was doing my exercise in the Locomat. I used it for the first time some 2 years ago. It was an incredible experience as it allowed me to”walk” again. It fitted in an approach to have me walk again.
Each of us has their individual challenges linked to our goals. Mine was/is : I want to walk again!
Hope you can overcome dizziness so that you can be inspired by the Lokomat.
Un caro saluto Willem