Dear Loyal Reader, I am back home, or at least, back in my home city. My actual home, the place where I spent most of my time before my accident, is still someway off. I hope to return there someday. In the meantime, I will continue writing this blog, in the hope that it is useful to somebody. 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.
Hanif, Perhaps a new house, single story, big open room, views, outside of London but within train service etc for visiting friends. Get your pals to find you such a place. New beginnings ease despair. After I was hit by lightning (A Match to the Heart) and medicac'd from my Wyoming ranch which I would never see again, I started fresh with $ help. It engaged me, though I could barely walk, talk or think for years. It helped immensely and provided a new kind of stimulus though I would always be homesick for what was gone. You have room in your heart for new homes. Xoxo gretel ehrlich
Gretel , I read your amazing book quite a few years ago. I remember it especially for the strength you had going through that experience (plus your mother!). Once again you offer your strength to Hanif, with very wise words written from a terribly dark place. I agree completely about new surroundings. My change came from the grief of losing my husband of 31 years, seven years ago. Our house that our friends called “the house of love,” was just an empty shell for me then. It took 14 months for me to move, then another month for the sale, but in my new rental I felt safe (a security building), had some friendly neighbors, was no longer isolated. I began to heal, opened my heart to joy again, eventually remarried, and now live in another “house of love.”
Hi Louise, Hanif needs constructive advice, don't you think? Are you in LA? I come often. Need help finding set designer for a performance piece I wrote. grets1046@gmail.com
Jun 27, 2023·edited Jun 27, 2023Liked by Hanif Kureishi
I am so sorry it's so horrific right now. I do understand! I was paralyzed from the shoulders down in 1992, although I recovered. After 6 weeks in hospital and rehab, I went home. I actually could walk (barely, and much to everyone's shock) at that point, but my arms were almost completely useless ('Central Cord Syndrome'), and I was still in horrible pain (at least for me, back then, spinal cord pain was constant, relentless, and completely untreatable). I hope your homecoming goes easier than mine. I was so looking forward to home, but when I got there, I realized that the familiar surroundings only underscored how much I'd changed. It almost felt like my past life was mocking or torturing me. You're already there - mourning the loss, but it may get worse when you finally do get home. So, please get all the emotional support you can (and you have much more than I did, and I am thankful you do), because after a week or two, the homecoming experience can become oddly, surreally, inverted - the 'place of comfort - HOME' can become this bitter place that underscores and delineates one's lost life at every turn. I am hoping your transition doesn't take that turn, but best to be aware, if you are first overjoyed to be home, and then find any kind of oppressive shift in mood happening, which is what happened to me: a kind of creeping ennui that became a crushing depression. Had I been forewarned (and, had anyone in my family realized that I was suffering major cPTSD over the physical damage, the pain, the loss of my previous life, and the actual damage to several parts of my brain), I might have been able to head it off at the pass. Instead, I came quite literally within inches of killing myself. Only the thought of my two young kids finding my body stopped me. How wonderful to look back and see that almost all of the peak moments in my life have happened SINCE my accident (the two peak moments from before were being present at my children's births). I feel, I hope, I pray, that this is true for you too: that many magical peak moments await you on your journey.
The only way out is through. You’ve made it this far. You’re back in London. I’m sorry it’s so shitty and maddening and terrifying at every stage. Though you may not want a bunch of fans showing up when you’re acutely vulnerable, this city is full of people who care about you from afar. I hope you can execute plan: home soon. Just like Dorothy in the Wizard of Oz 😉
you will recover, you will feel at home and content again.
These feelings you describe are to be expected, one day you will reflect on this mix of homesickness and arrival and loss and I am certain, you will find amazing words to express your memories of what is happening now.
My life, the one I was so certain of, ended suddenly 12 years ago with a - at the time - devastating diagnosis of a chronic illness. I admit that at times, reading your blog posts was almost impossible for me as it reminded me so much of that time of limbo and despair and panic. It is a shitty journey, I won't deny it, but it's a challenge you will master. Don't worry about friendships or how others feel. Friends will stay on, and some may stay away and come back after a while. Nobody will find this easy.
Don't hold back, write it all down, witness yourself change and learn and adapt.
"Live all you can: It’s a mistake not to." (Henry James)
Jun 27, 2023·edited Jun 27, 2023Liked by Hanif Kureishi
I will also say this: for me, moving from the Neuro Intensive Care Unit at Bellevue, to a semi-private room on the 'neuro ward', then to the Rusk Institute for rehab, then home - each and every move was like leaving a womb, a tiny place that I hated, but that I'd come to know. It was utterly, utterly terrifying each time. Being helpless makes one so dependent on constancy - any little immutable crumb of reality is clung to - or, at least was by myself. So, just be aware of this, this is a normal psychological reaction. I am sure you have access to much more mental health support than I did, and I haven't read all of your dispatches, so I don't know how much you've received. But if I were you, I'd investigate things like EMDR and Neurofeedback right away! I'd also get on supplements like Benfotiamine and Alpha Lipoic Acid and EPO/DHA. I got MUCH more function back from my spinal injury (in fact, they insisted I was a 'miracle' - which I was not) from these supplements, and, years later, much help for the trauma from the EMDR and Neurofeedback - but it's better to start sooner! WAY BETTER!
Dear Hanif thanks for sharing your reflections on your return to London- ( it seems like a scene from one flew over the cuckoo’s nest)- I do wish that you will soon be in a place that can provide you the necessary rehab to keep you making progress - it is important to focus your energy onto the goal of what is most important to you- i am now almost 3 years a partial paraplegic and continue to work to achieve my goal of walking - it is tough but the right coaches are critical- time is essential so do not stay if things are not improving. Sorry for this long comment. Wish you forza forza- buona serata Willem
Jun 27, 2023·edited Jun 27, 2023Liked by Hanif Kureishi
Hanif, my heart goes out to you during this extremely difficult stage. As others have said, the journey itself is a trauma. Hoping so hard that you can move on to a more peaceful suitable accomm soon, with greenery to look at and get back to physio. Could consider bringing a private physio in for some sessions if nothing forthcoming or there's not enough? I am sure many of us would want to donate for this kind of thing if that would help. Your friends will not in a million years abandon you, nor will we. I'm sending you this poem, "St Raphael's on the Moor" by Rachael Boast (from her collection, "Hotel Raphael", 2021). St Raphael is patron saint of travellers and of healing. You have attained London, you are on the path home (like a shit Tour de France) and we are cheering you on every step of the way. xxx
Trust your feelings and instincts. And get an advocate. Seriously don’t fall into self blame. Whatever is going on get answers and solutions. Demand your physical therapy and any other accommodations for your pain, eating, sleeping, moving, and whatever else is being neglected. Private nursing. Psychotherapy. Whatever. Get your sons on it. Make noise. Don’t give up. Also I don’t think the idea of going home is crazy at all. Finding a new normal in your home. With all the help you require and deserve. xo
Oh how my heart aches for you. I’ve been held up by your writing through your ordeal as I’ve been working through coming to grips with my incurable cancer. You make me feel not alone. So many loyal readers here are assuring you we are not going anywhere. We are with you. I am a thousand miles from “my tribe” and still feel there love and support and caring from far away. Please think of me and all those reaching out to you here. Let us hold you, comfort you. Damn I want so much better for you.
Dear Hanif, your gift allows you to write the truth of your experience, with all its painful loss, and can you, do you, fully know how much this sustains others? I hope so, dear Hanif. This is the gift.
That must have been a dreadful experience, made only worse by your being put into isolation. Any response must sound like a platitude, but trying not to get to far out ahead of yourself about what's coming up might be helpful. The travel bit alone was a trauma and it will take you some time to just recover from that and adjust to a new setting. Be patient with yourself and allow yourself to recover and not give in to despair. I would be very surprised if your friends deserted you - you are far too dear!
As others mention, we, your loyal readers, will not desert you. Even when you write what is hard to read which continues the somber mode of the morning, Lynsey Addario's NYT piece from Donbas. agree with another of your loyal followers who says the only way to it is through it. you're in LONDON. yes shitty at the moment but HOME has to be close and you will get there! appreciate your keen eye of observing what it is like to travel in disabled form; as my sister has been in the form for the last ten years. (polio). My father used to advise me, when I didn't understand her woes, to "try dragging your leg around for a day. See what that feels like." You bring us into empathy with all those disabled.
Oh Hanif, my heart goes out to you, and if I say it will get better you can’t imagine it, maybe you think it will get worse. You wish for the familiarity of the Rome hospital. And if we had warmed you of these feelings you wouldn’t have believed us. But you have taken a huge step forward and you will build on this, moment by moment, hour by hour etc, it will change, like a seesaw, up but sometimes down too. Your friends will not desert you, they know how it is, they are with you, they like you can dream of a day when you can go out with them for a drink....it will come, take courage we are here for you. Xx
My heart goes out to you and your loved ones. Take comfort in those around you, your loved ones and everyone who reads your blogs are all willing you on. You can do this. I'm sure you have so many challenges to try and navigate.
My husband was critically ill in hospital for nine months. The NHS is stretched and I fought hard to get physio support. I can give some practical advise. The main things are nutrition and physio. I can only speak from our experience , as trusts and resources vary. I started taking in food which could be microwaved for meals, as my husband was losing weight. His physio was limited to if he was lucky once a week., so I learnt how to do basic exercises to help maintain his muscle mass. For your mental health do go out everyday for fresh air. We played board games, crosswords. It helps you contact with the outside world. We listened to music, sat in a garden. Keeping a dialogue with the consultants, doctors and nurses helps.
We made a plan to get home by implementing a care plan first and physio. The hospital can do this.
Accept my apologises if you know all this. You can do this! The road ahead seems a long rocky one, but over the brow of the hill, the sun is waiting to greet you. Best Wishes Kathryn x
Hanif, Perhaps a new house, single story, big open room, views, outside of London but within train service etc for visiting friends. Get your pals to find you such a place. New beginnings ease despair. After I was hit by lightning (A Match to the Heart) and medicac'd from my Wyoming ranch which I would never see again, I started fresh with $ help. It engaged me, though I could barely walk, talk or think for years. It helped immensely and provided a new kind of stimulus though I would always be homesick for what was gone. You have room in your heart for new homes. Xoxo gretel ehrlich
Gretel , I read your amazing book quite a few years ago. I remember it especially for the strength you had going through that experience (plus your mother!). Once again you offer your strength to Hanif, with very wise words written from a terribly dark place. I agree completely about new surroundings. My change came from the grief of losing my husband of 31 years, seven years ago. Our house that our friends called “the house of love,” was just an empty shell for me then. It took 14 months for me to move, then another month for the sale, but in my new rental I felt safe (a security building), had some friendly neighbors, was no longer isolated. I began to heal, opened my heart to joy again, eventually remarried, and now live in another “house of love.”
Very, very wise and thoughtful words!!
wise words, Gretel! and hello from Louise.
Hi Louise, Hanif needs constructive advice, don't you think? Are you in LA? I come often. Need help finding set designer for a performance piece I wrote. grets1046@gmail.com
I am so sorry it's so horrific right now. I do understand! I was paralyzed from the shoulders down in 1992, although I recovered. After 6 weeks in hospital and rehab, I went home. I actually could walk (barely, and much to everyone's shock) at that point, but my arms were almost completely useless ('Central Cord Syndrome'), and I was still in horrible pain (at least for me, back then, spinal cord pain was constant, relentless, and completely untreatable). I hope your homecoming goes easier than mine. I was so looking forward to home, but when I got there, I realized that the familiar surroundings only underscored how much I'd changed. It almost felt like my past life was mocking or torturing me. You're already there - mourning the loss, but it may get worse when you finally do get home. So, please get all the emotional support you can (and you have much more than I did, and I am thankful you do), because after a week or two, the homecoming experience can become oddly, surreally, inverted - the 'place of comfort - HOME' can become this bitter place that underscores and delineates one's lost life at every turn. I am hoping your transition doesn't take that turn, but best to be aware, if you are first overjoyed to be home, and then find any kind of oppressive shift in mood happening, which is what happened to me: a kind of creeping ennui that became a crushing depression. Had I been forewarned (and, had anyone in my family realized that I was suffering major cPTSD over the physical damage, the pain, the loss of my previous life, and the actual damage to several parts of my brain), I might have been able to head it off at the pass. Instead, I came quite literally within inches of killing myself. Only the thought of my two young kids finding my body stopped me. How wonderful to look back and see that almost all of the peak moments in my life have happened SINCE my accident (the two peak moments from before were being present at my children's births). I feel, I hope, I pray, that this is true for you too: that many magical peak moments await you on your journey.
We will never desert you Hanif love Nige
The only way out is through. You’ve made it this far. You’re back in London. I’m sorry it’s so shitty and maddening and terrifying at every stage. Though you may not want a bunch of fans showing up when you’re acutely vulnerable, this city is full of people who care about you from afar. I hope you can execute plan: home soon. Just like Dorothy in the Wizard of Oz 😉
Dear Hanif,
you will recover, you will feel at home and content again.
These feelings you describe are to be expected, one day you will reflect on this mix of homesickness and arrival and loss and I am certain, you will find amazing words to express your memories of what is happening now.
My life, the one I was so certain of, ended suddenly 12 years ago with a - at the time - devastating diagnosis of a chronic illness. I admit that at times, reading your blog posts was almost impossible for me as it reminded me so much of that time of limbo and despair and panic. It is a shitty journey, I won't deny it, but it's a challenge you will master. Don't worry about friendships or how others feel. Friends will stay on, and some may stay away and come back after a while. Nobody will find this easy.
Don't hold back, write it all down, witness yourself change and learn and adapt.
"Live all you can: It’s a mistake not to." (Henry James)
It's what guided me out of the dark.
Much love,
Sabine
I will also say this: for me, moving from the Neuro Intensive Care Unit at Bellevue, to a semi-private room on the 'neuro ward', then to the Rusk Institute for rehab, then home - each and every move was like leaving a womb, a tiny place that I hated, but that I'd come to know. It was utterly, utterly terrifying each time. Being helpless makes one so dependent on constancy - any little immutable crumb of reality is clung to - or, at least was by myself. So, just be aware of this, this is a normal psychological reaction. I am sure you have access to much more mental health support than I did, and I haven't read all of your dispatches, so I don't know how much you've received. But if I were you, I'd investigate things like EMDR and Neurofeedback right away! I'd also get on supplements like Benfotiamine and Alpha Lipoic Acid and EPO/DHA. I got MUCH more function back from my spinal injury (in fact, they insisted I was a 'miracle' - which I was not) from these supplements, and, years later, much help for the trauma from the EMDR and Neurofeedback - but it's better to start sooner! WAY BETTER!
Excellent suggestions. I was also thinking of Clinical Hypnosis.
Very good suggestion Re: EMDR as soon as possible and supplements for sure as well.
Dear Hanif thanks for sharing your reflections on your return to London- ( it seems like a scene from one flew over the cuckoo’s nest)- I do wish that you will soon be in a place that can provide you the necessary rehab to keep you making progress - it is important to focus your energy onto the goal of what is most important to you- i am now almost 3 years a partial paraplegic and continue to work to achieve my goal of walking - it is tough but the right coaches are critical- time is essential so do not stay if things are not improving. Sorry for this long comment. Wish you forza forza- buona serata Willem
Hanif, my heart goes out to you during this extremely difficult stage. As others have said, the journey itself is a trauma. Hoping so hard that you can move on to a more peaceful suitable accomm soon, with greenery to look at and get back to physio. Could consider bringing a private physio in for some sessions if nothing forthcoming or there's not enough? I am sure many of us would want to donate for this kind of thing if that would help. Your friends will not in a million years abandon you, nor will we. I'm sending you this poem, "St Raphael's on the Moor" by Rachael Boast (from her collection, "Hotel Raphael", 2021). St Raphael is patron saint of travellers and of healing. You have attained London, you are on the path home (like a shit Tour de France) and we are cheering you on every step of the way. xxx
St Raphael's on the Moor
Down along the trail where the course
of the water and the path are confluent
over the loose stones given the voice
of a singing path that saves me
from thinking, I'm somewhere
between setting out and arriving.
I wash my face in its vowels
I soak my eyes with its momentary silver
and carry on, over the black and white
glissando in fragments of granite
until the road passes between there
and there-over, into a prayer house,
the double doors painted blue,
the scrape of oak across flagstone,
the late hours's holding back
of the bell of tears. What a world -
how it swings between this and that,
how it calls and calls. At the end
of the pews, white quills to match
the white walls with arched wings
of silent stones waiting for me to write
something. But my words come out
altered, lifted into this after-place
of what can be relied on. I fold this
message up into my stepping out
to take the path back into the wood.
Trust your feelings and instincts. And get an advocate. Seriously don’t fall into self blame. Whatever is going on get answers and solutions. Demand your physical therapy and any other accommodations for your pain, eating, sleeping, moving, and whatever else is being neglected. Private nursing. Psychotherapy. Whatever. Get your sons on it. Make noise. Don’t give up. Also I don’t think the idea of going home is crazy at all. Finding a new normal in your home. With all the help you require and deserve. xo
Yes, yes ,yes! Get an advocate ASAP inside the hospital/ recovery center and bring in all the outside help you can find...
Oh how my heart aches for you. I’ve been held up by your writing through your ordeal as I’ve been working through coming to grips with my incurable cancer. You make me feel not alone. So many loyal readers here are assuring you we are not going anywhere. We are with you. I am a thousand miles from “my tribe” and still feel there love and support and caring from far away. Please think of me and all those reaching out to you here. Let us hold you, comfort you. Damn I want so much better for you.
Dear Hanif, your gift allows you to write the truth of your experience, with all its painful loss, and can you, do you, fully know how much this sustains others? I hope so, dear Hanif. This is the gift.
your loyal reader, Patricia
That must have been a dreadful experience, made only worse by your being put into isolation. Any response must sound like a platitude, but trying not to get to far out ahead of yourself about what's coming up might be helpful. The travel bit alone was a trauma and it will take you some time to just recover from that and adjust to a new setting. Be patient with yourself and allow yourself to recover and not give in to despair. I would be very surprised if your friends deserted you - you are far too dear!
Hanif..perhaps you should have wept...you enable your readers to weep....you are a warrior..keep on keeping on...
As others mention, we, your loyal readers, will not desert you. Even when you write what is hard to read which continues the somber mode of the morning, Lynsey Addario's NYT piece from Donbas. agree with another of your loyal followers who says the only way to it is through it. you're in LONDON. yes shitty at the moment but HOME has to be close and you will get there! appreciate your keen eye of observing what it is like to travel in disabled form; as my sister has been in the form for the last ten years. (polio). My father used to advise me, when I didn't understand her woes, to "try dragging your leg around for a day. See what that feels like." You bring us into empathy with all those disabled.
Oh Hanif, my heart goes out to you, and if I say it will get better you can’t imagine it, maybe you think it will get worse. You wish for the familiarity of the Rome hospital. And if we had warmed you of these feelings you wouldn’t have believed us. But you have taken a huge step forward and you will build on this, moment by moment, hour by hour etc, it will change, like a seesaw, up but sometimes down too. Your friends will not desert you, they know how it is, they are with you, they like you can dream of a day when you can go out with them for a drink....it will come, take courage we are here for you. Xx
Dear Hanif,
My heart goes out to you and your loved ones. Take comfort in those around you, your loved ones and everyone who reads your blogs are all willing you on. You can do this. I'm sure you have so many challenges to try and navigate.
My husband was critically ill in hospital for nine months. The NHS is stretched and I fought hard to get physio support. I can give some practical advise. The main things are nutrition and physio. I can only speak from our experience , as trusts and resources vary. I started taking in food which could be microwaved for meals, as my husband was losing weight. His physio was limited to if he was lucky once a week., so I learnt how to do basic exercises to help maintain his muscle mass. For your mental health do go out everyday for fresh air. We played board games, crosswords. It helps you contact with the outside world. We listened to music, sat in a garden. Keeping a dialogue with the consultants, doctors and nurses helps.
We made a plan to get home by implementing a care plan first and physio. The hospital can do this.
Accept my apologises if you know all this. You can do this! The road ahead seems a long rocky one, but over the brow of the hill, the sun is waiting to greet you. Best Wishes Kathryn x