Dear Readers, I began this blog in January, less than a month after my fall. For seven months I’ve been rambling about my condition, hoping to reach you somehow, to tell you what is like to live without the use of your arms or legs. It is no fun, to say the least.
Hi Hanif - Reading your last entry is like reading a gratitude list (I imagine you’ll hate that I reduced it to a gratitude list - ha - but here it goes anyway)
1. I’m finally in a place that understands this new body and can help me.
2. I have loads of friends who sustain me with their intellect, support and humor.
3. I can go outside and feel the sun on my face, get a shave and have a halloumi sandwich.
4. My family remains steadfast, honest and loving.
5. My caregivers finally know what they are doing and are kind.
6. My mind is sharp as is my pen and I have a way to share my experience and let others respond to me.
Truthfully disability is the shits. It is fucking hard, it will be with you for the rest of your life. People feel sorry for us because they probably are genuinely sorry we have whatever disability they are staring at. Wheelchairs, disfigurement and missing limbs are hard to hide. We just have to face it or ignore it or hide it or get angry about it. I have done all the above. But don’t let them suck out your joy in other areas. I’m not being unsympathetic. I get it. I hope you will begin to believe you can be happy again.
PS A home visit is a great idea. Hopefully a therapist could go with you so you can sort out all the roadblocks to going home permanently. Living in a hospital setting does take away your autonomy - I understand why you feel helpless . I hope you are getting challenging PT/OT/Rec therapy now that your strength and health is improving. Your infection and bowel/bladder problems were dangerous, life threatening and wiped you out. Things will be better now. Keep fighting. I’m in your corner - Carol
I hate to disagree with your lovely Isabella, but I think it makes good sense to write truthfully about what you are going through. (but maybe people should stop sending her so many concerned texts!) Your posts give a much needed perspective that any of this could happen to any of us and we should be more mindful about what we've got and to look at the heterogeneity of the world and the complexity of life, whether we're on our feet or in a chair
Most of us don't know you personally, but we know your work. And reading your posts, I am reminded that writing and communicating with great honesty is one of your most powerful gifts. You are not completely helpless and powerless so long as you can communicate. I believe that as long as you feel you have something to say, you'll have many many people who want to hear it and be there with you in spirit, if not in person.
My mother owns a brass preserving pan. It lives on a low, slatted shelf underneath a moveable kitchen unit, where food is prepared, and where kitchen utensils are stored in an overfilled drawer that has greatly worn away its wooden runners.
At Christmas, the pan is filled with pine cones and ribbons. At other times of the year it is left empty. Its close proximity to the kitchen sink means that it is often spattered with drops of water which blacken and tarnish the metal.
Twice a year (in late June and late November) I polish it.
It is very hard work and initially rather joyless. The pan seems mired in its own smeared oxidisation, as if it will never be clean. Then suddenly, it will be as if the clouds have parted – bright polished metal will appear, not gradually but almost in an instant. My rule is to only stop polishing when the pan gleams the same way that the marshalled brass sounds on 'Strawberry Fields Forever'.
That is this week's metaphor for your recovery - light appearing in places where there once seemed to be an impenetrable and pervading darkness.
I would write more, but for my dear chameleon, Frederic, who is sprawled across my bare chest where he is quietly dying. It is a blessing that chameleons do not fully grasp their finite nature. They do, in their own way, understand love. I must remove my hands from my computer keyboard and place them on him, so that he knows that he is loved.
Don't worry about complaining, it's hard to do much else in your situation. Have you been getting any physical therapy? Giving up your Independence is the hardest thing on earth. I've been dealing with it too now that I'm on hospice. I also hate it when people announce where they're going, I wish I could get in a plane and go somewhere. I don't know about your spiritual background but Ram Dass who had a stroke wrote about having to give up his ability to take care of himself and surrendering to being taken care of. It was interesting stuff. You might want to take a look at it. I'll try to find the link for you. It's encouraging that you're eating and pooing anyway. That does show you're on the upswing in some way anyway.
Well, I love the socks. And I am glad you are able to be eating again, and hope that brings you nourishment in any possible way. Part of your power, whether you know it or not, is your capacity to register what it is to feel frail and vulnerable, an experience most of us feel we have to conceal but which so many of us, and so many people in the world, do experience. (and ultimately so many will). You write about it, straightforwardly, and we feel some weight lift. So I am reminding you of your power, for which I am grateful. And there is a kind of fierceness in your honesty, your refusal to turn away, which is strength, and which also nourishes your readers. Fare forward, dear Hanif.
I have so enjoyed your writing which has encouraged me to write a blog now and then to keep my son informed about what I do all day.
I do hope your writings will be published in book form.
I wondered what sort of medical treatment you have received. You said you had a fall or similar which has left you paralysed but have you had a comprehensive diagnosis of what happened and what options you have for rehabilitation and recovery? It would be good to hear about that in your blog. You are right to press for a return home.
Your blog has created a formidable connection with your readers and the public who care for you and want to see you recovered.
I'm so glad to read the verb "looking up", the English language has lots of interesting phrasal verbs with up. It's difficult to translate the verb + preposition in Italian, my own language. "Up" points to a higher, better level of improvement, which I wish you could reach soon. This summer is devastating here in Italy: floods, storms, fires. It seems a prelude to a climate apocalypse, not just change. My dogs revive in the evening, when we can finally feel a light breeze from the hills around my hometown. While waiting for a call from the hospital, I find it hard to sleep at night. I hope your dreams will not change to nightmares and wish you a nice evening.
You write: "It is strange to me, someone who has spent their life doing exactly what they want, to now be in this straight jacket, to have no agency or independence. To be helpless and powerless." But you are not powerless! Your words affect others, perhaps more than ever! Please remember that. Also: I need a new audio book and so I will listen to Money, thanks to you (See? Not "powerless"!) .
Hurray. There is light in them tunnels and you are seeing it, plan outings with a pass for a few hours and a trusty wheelchair. Glad you are eating .how about some tandoori chicken and naan with a yogurt mint chutney ? Do it even you die afterwards 😋 high rise hugs from Toronto
You’re eating...and shitting! Things are indeed looking up, even though the view is still bleak. As many have said, your courage to be honest about your humiliating, debilitating and depressing situation is a timely reminder to us all about the frailty of life - and the preciousness of being able to live a full life. Hanif, your missives are helping us and I hope we in some slight way are helping you. Love from Australia.
As many said previously clearing the bowels has made a huge difference and should have been done weeks ago. Anyway a returning appetite and better nourishment will bring further slow improvement. It can be painful thinking of what you’re missing out on but you should live in hope that some semblance of your previous life may return. Your bank of interesting lived experiences probably exceeds most people’s but I totally accept your current frustration. Think about prognosis, rehabilitation and maximising function for the future. Things can change. I know of someone who returned to their home last week for a visit a full eleven months after a fall; not permanently but even a short visit was a hugely positive and boosting experience and can be built on. Warmest wishes from a sunshine and showers Ireland.
Glad to hear you are improving and an outing to a Syrian barber must have been a good break in your routine.
I’m getting positive vibes in this post and sending them straight back to you with bells on. I’m tempted to write there’s life in the old blog yet and then am tempted to delete it (I’m a Libran - decisions can be difficult.)
Love the socks. Love the attitude wearing them alludes to. Im sending that message to the illness that is holding you hostage. I was 50 something when I learnt that when a wrist breaks and needs an op and caste and time to heal it’s actually still broken, in a way, as even when it was “healed” I found it impossible to move the bloody thing. I thought it would be just normal but it took weeks of physio to get the movement back. The body is a magnificent and mysterious thing.
Anyway, promoted by the socks, I hope all your troubles will start to “fuck off.” Feet upwards. All best wishes
Hi Hanif - Reading your last entry is like reading a gratitude list (I imagine you’ll hate that I reduced it to a gratitude list - ha - but here it goes anyway)
1. I’m finally in a place that understands this new body and can help me.
2. I have loads of friends who sustain me with their intellect, support and humor.
3. I can go outside and feel the sun on my face, get a shave and have a halloumi sandwich.
4. My family remains steadfast, honest and loving.
5. My caregivers finally know what they are doing and are kind.
6. My mind is sharp as is my pen and I have a way to share my experience and let others respond to me.
Truthfully disability is the shits. It is fucking hard, it will be with you for the rest of your life. People feel sorry for us because they probably are genuinely sorry we have whatever disability they are staring at. Wheelchairs, disfigurement and missing limbs are hard to hide. We just have to face it or ignore it or hide it or get angry about it. I have done all the above. But don’t let them suck out your joy in other areas. I’m not being unsympathetic. I get it. I hope you will begin to believe you can be happy again.
PS A home visit is a great idea. Hopefully a therapist could go with you so you can sort out all the roadblocks to going home permanently. Living in a hospital setting does take away your autonomy - I understand why you feel helpless . I hope you are getting challenging PT/OT/Rec therapy now that your strength and health is improving. Your infection and bowel/bladder problems were dangerous, life threatening and wiped you out. Things will be better now. Keep fighting. I’m in your corner - Carol
"Things are looking up" --- the most wonderful four words of yours that I have ever read.
That, and the line "Those bastards at the creative writing group"
Amen
I hate to disagree with your lovely Isabella, but I think it makes good sense to write truthfully about what you are going through. (but maybe people should stop sending her so many concerned texts!) Your posts give a much needed perspective that any of this could happen to any of us and we should be more mindful about what we've got and to look at the heterogeneity of the world and the complexity of life, whether we're on our feet or in a chair
Most of us don't know you personally, but we know your work. And reading your posts, I am reminded that writing and communicating with great honesty is one of your most powerful gifts. You are not completely helpless and powerless so long as you can communicate. I believe that as long as you feel you have something to say, you'll have many many people who want to hear it and be there with you in spirit, if not in person.
My mother owns a brass preserving pan. It lives on a low, slatted shelf underneath a moveable kitchen unit, where food is prepared, and where kitchen utensils are stored in an overfilled drawer that has greatly worn away its wooden runners.
At Christmas, the pan is filled with pine cones and ribbons. At other times of the year it is left empty. Its close proximity to the kitchen sink means that it is often spattered with drops of water which blacken and tarnish the metal.
Twice a year (in late June and late November) I polish it.
It is very hard work and initially rather joyless. The pan seems mired in its own smeared oxidisation, as if it will never be clean. Then suddenly, it will be as if the clouds have parted – bright polished metal will appear, not gradually but almost in an instant. My rule is to only stop polishing when the pan gleams the same way that the marshalled brass sounds on 'Strawberry Fields Forever'.
That is this week's metaphor for your recovery - light appearing in places where there once seemed to be an impenetrable and pervading darkness.
I would write more, but for my dear chameleon, Frederic, who is sprawled across my bare chest where he is quietly dying. It is a blessing that chameleons do not fully grasp their finite nature. They do, in their own way, understand love. I must remove my hands from my computer keyboard and place them on him, so that he knows that he is loved.
love to the little chameleon with such a great namesake - I am sure from many of us here. he knows he is deeply cared for by you.
I’m so sorry your chameleon is dying. Rest in peace, Frederick.
Don't worry about complaining, it's hard to do much else in your situation. Have you been getting any physical therapy? Giving up your Independence is the hardest thing on earth. I've been dealing with it too now that I'm on hospice. I also hate it when people announce where they're going, I wish I could get in a plane and go somewhere. I don't know about your spiritual background but Ram Dass who had a stroke wrote about having to give up his ability to take care of himself and surrendering to being taken care of. It was interesting stuff. You might want to take a look at it. I'll try to find the link for you. It's encouraging that you're eating and pooing anyway. That does show you're on the upswing in some way anyway.
RamDass is especially worthwhile when he just pops up, like now. Find that link, Erica!
Here's a link to the audiobook, which Hanif is listening to these days. https://www.amazon.com/Still-Here-Ram-Dass-audiobook/dp/B000056F2E/ref=tmm_aud_swatch_0?_encoding=UTF8&qid=&sr=
Got it! Bottom line (in preface): ‘Still learning to be here now!’ (Or, What else could it be, right?)
Dear Hanif,
Well, I love the socks. And I am glad you are able to be eating again, and hope that brings you nourishment in any possible way. Part of your power, whether you know it or not, is your capacity to register what it is to feel frail and vulnerable, an experience most of us feel we have to conceal but which so many of us, and so many people in the world, do experience. (and ultimately so many will). You write about it, straightforwardly, and we feel some weight lift. So I am reminding you of your power, for which I am grateful. And there is a kind of fierceness in your honesty, your refusal to turn away, which is strength, and which also nourishes your readers. Fare forward, dear Hanif.
Your loving reader, Patricia
I have so enjoyed your writing which has encouraged me to write a blog now and then to keep my son informed about what I do all day.
I do hope your writings will be published in book form.
I wondered what sort of medical treatment you have received. You said you had a fall or similar which has left you paralysed but have you had a comprehensive diagnosis of what happened and what options you have for rehabilitation and recovery? It would be good to hear about that in your blog. You are right to press for a return home.
Your blog has created a formidable connection with your readers and the public who care for you and want to see you recovered.
Thank you, Hanif
I'm so glad to read the verb "looking up", the English language has lots of interesting phrasal verbs with up. It's difficult to translate the verb + preposition in Italian, my own language. "Up" points to a higher, better level of improvement, which I wish you could reach soon. This summer is devastating here in Italy: floods, storms, fires. It seems a prelude to a climate apocalypse, not just change. My dogs revive in the evening, when we can finally feel a light breeze from the hills around my hometown. While waiting for a call from the hospital, I find it hard to sleep at night. I hope your dreams will not change to nightmares and wish you a nice evening.
Molta simpatica, Francesca.
You write: "It is strange to me, someone who has spent their life doing exactly what they want, to now be in this straight jacket, to have no agency or independence. To be helpless and powerless." But you are not powerless! Your words affect others, perhaps more than ever! Please remember that. Also: I need a new audio book and so I will listen to Money, thanks to you (See? Not "powerless"!) .
PS It's "straitjacket," at least in the US.
Hurray. There is light in them tunnels and you are seeing it, plan outings with a pass for a few hours and a trusty wheelchair. Glad you are eating .how about some tandoori chicken and naan with a yogurt mint chutney ? Do it even you die afterwards 😋 high rise hugs from Toronto
You’re eating...and shitting! Things are indeed looking up, even though the view is still bleak. As many have said, your courage to be honest about your humiliating, debilitating and depressing situation is a timely reminder to us all about the frailty of life - and the preciousness of being able to live a full life. Hanif, your missives are helping us and I hope we in some slight way are helping you. Love from Australia.
I never thought I could be so happy about someone's shit. Great ch ch ch changes!
Thank you for your honesty. It is a great gift to your readers. ❤️
As many said previously clearing the bowels has made a huge difference and should have been done weeks ago. Anyway a returning appetite and better nourishment will bring further slow improvement. It can be painful thinking of what you’re missing out on but you should live in hope that some semblance of your previous life may return. Your bank of interesting lived experiences probably exceeds most people’s but I totally accept your current frustration. Think about prognosis, rehabilitation and maximising function for the future. Things can change. I know of someone who returned to their home last week for a visit a full eleven months after a fall; not permanently but even a short visit was a hugely positive and boosting experience and can be built on. Warmest wishes from a sunshine and showers Ireland.
Gotta love the inner. Thin brown rice congee with wakame sea veg.
Glad to hear you are improving and an outing to a Syrian barber must have been a good break in your routine.
I’m getting positive vibes in this post and sending them straight back to you with bells on. I’m tempted to write there’s life in the old blog yet and then am tempted to delete it (I’m a Libran - decisions can be difficult.)
Love the socks. Love the attitude wearing them alludes to. Im sending that message to the illness that is holding you hostage. I was 50 something when I learnt that when a wrist breaks and needs an op and caste and time to heal it’s actually still broken, in a way, as even when it was “healed” I found it impossible to move the bloody thing. I thought it would be just normal but it took weeks of physio to get the movement back. The body is a magnificent and mysterious thing.
Anyway, promoted by the socks, I hope all your troubles will start to “fuck off.” Feet upwards. All best wishes
We refuse to be commanded by your socks! Bodily indignity is the stuff of hospitals and getting older. But you are enduring. Hugs Hannah x