So you're telling me that you cannot yet suction Sophie's trach and eat a sandwich at the same time? For some reason that phrase the respiratory therapist said to you keeps coming back.
Why DO you always feel that you must jump right to gratitude? I'll tell you a secret- when I think of you, Elizabeth (which I do frequently) I always think, "I know she hates it when people say this but how does she do it?" How do you do it? I know. You just do but...
From outside your window it all looks as impossible as the flying trapeze artists.
Setting aside for a moment all the work, the endless caretaking, I just have to say: Sophie looks so peaceful sitting on the front stoop, watching the world.
It's a female survival instinct, this pretending that things are not that bad, the minimizing and so on. It comes from the same tiny corner of our amygdala that makes us "grin and bear" and got to work with period pains and all the stuff we pretend we can cope with and know that one day it'll be too much.
Take care, find escapes, know you are doing heroic things.
I've followed your posts for 15 years or so. The perspective you bring of the caregiver's responsibility, the tasks required, and the failure of our healthcare system have brought me to tears many times. I'm a retired radiation therapist. The healthcare system is so fragmented, everyone suffers unnecessarily and pays too much for so little actual caring. When will caring become integrated rather than "I care for you for the 15 minutes you are in my responsibility then have to pivot to the next patient, and the next...". It is not CARING and honestly, damages the souls of many healthcare workersas well.
Years ago I took a course about chronic kidney failure and dialysis. What I didn't know then was how much of an impact chronic diseases have on a person and on their families. At the same time that I was taking this course, I was also training for a half marathon. I had a rigid schedule to follow, to ensure I would be able to complete the half marathon, that was eighteen weeks long. What I learned about myself is that I could not stick to that schedule, it was too hard, it affected every part of my life, even work. And then I started to have a glimmer of understanding of what it was like for patients living with a chronic illness that affected every part of their lives. The thing is, I quit after eighteen weeks and patients, and their families, couldn't quit.
You need help because nobody can do what you're doing indefinitely, it will break you, not because you don't love Sophie, but because you're a human being. If I was nearby, I would take some of your night shifts. The world is still too big at times.
I loved your honesty. I, too, am a minimizer to the outside world. I'm okay, really! when I am anything but. I relate to your exhaustion. But I was reminded of the importance of our writing and honesty. Through yours I feel less alone in the world, different circumstances, different struggles but the human experience is one we share at its core. I stand with you and Sophie, witness to your strength and endurance and deep, abiding love.
Oh dear Elizabeth. All these wonderful worlds to escape into while you're dealing with a reality most of us could scarcely imagine. Let alone recognise even through our wonderful words. There's reality and then there's Reality, with an upper case R. The really tough stuff that dogs you all the time. You do it with such grace. A trapeze artist indeed.
have missed you, too! you are a circus performer, par excellence... balancing the impossible and somehow making it hold together. admiration. admiration. not just for your performance but for the tender evocative authentic way in which you are able to observe report... here to listen...
There is so much here that just stopped me, gobsmacked me, made me ponder life's deeper truths. First off, that photo of Sophie in the doorway is extraordinary: it is art and heartbreak and faith, it is endurance and love, aching and beautiful. And these lines:
"The reality I’m putting up with would either shock or bore you, according to whatever level of life you’re playing."
"Why is it that every time I write of reality I feel compelled to minimize it, to make it better, to rush toward gratitude, to make sure that everyone out there knows that I know how privileged I really am? That I’m not slowly dying of sadness?"
I'm neither shocked nor bored, but dying of sadness with you, because today it feels to me that life is about wrestling sadness to the ground, again and again, and during some stretches we can't quite manage that feat, and so you attend to Sophie in her sitting up bed, and I applaud you for finding that workaround, but don't twist your body like a circus performer if you can help. Pain in the body and pain in the soul is another level of life entirely. I love you, my friend. I am gobsmacked by you.
I felt this - and I am never bored reading any of your words - Thank you.
“Why is it that every time I write of reality I feel compelled to minimize it, to make it better, to rush toward gratitude, to make sure that everyone out there knows that I know how privileged I really am? That I’m not slowly dying of sadness?”
My husband had the same reaction to his cataract surgery. He could always see close up without glasses and now half the time he can't remember he needs them to read etc. He rather have had them do it so he was as usual. He's really rather bitter about it. And all the drops at the beginning. At least, how many in which eye etc.
Nothing I can say about your high wire act with Sophie so I focus on what I know - eyes.
And there you and Sophie are! It is a somewhat strange world, she of the middle of the night (for me, at least), intimate “conversations,” honest and both real and Real communication, and all the resultant feelings and emotions that ensue. But it is 4 am here in Marblehead and I am in the tunnel between having been summoned awake by I’m not sure what, and deeply wanting/needing to be asleep again before I have to be up on my feet and deal with my day rather than swim in the remains of the day. Blueberry cobbler it is (perhaps with a dollop of real whipped cream?).
So you're telling me that you cannot yet suction Sophie's trach and eat a sandwich at the same time? For some reason that phrase the respiratory therapist said to you keeps coming back.
Why DO you always feel that you must jump right to gratitude? I'll tell you a secret- when I think of you, Elizabeth (which I do frequently) I always think, "I know she hates it when people say this but how does she do it?" How do you do it? I know. You just do but...
From outside your window it all looks as impossible as the flying trapeze artists.
Reality bites.
This post took me back. I’m exhausted just reading it
Setting aside for a moment all the work, the endless caretaking, I just have to say: Sophie looks so peaceful sitting on the front stoop, watching the world.
I'm glad you are nourishing your mind!
It's a female survival instinct, this pretending that things are not that bad, the minimizing and so on. It comes from the same tiny corner of our amygdala that makes us "grin and bear" and got to work with period pains and all the stuff we pretend we can cope with and know that one day it'll be too much.
Take care, find escapes, know you are doing heroic things.
I've followed your posts for 15 years or so. The perspective you bring of the caregiver's responsibility, the tasks required, and the failure of our healthcare system have brought me to tears many times. I'm a retired radiation therapist. The healthcare system is so fragmented, everyone suffers unnecessarily and pays too much for so little actual caring. When will caring become integrated rather than "I care for you for the 15 minutes you are in my responsibility then have to pivot to the next patient, and the next...". It is not CARING and honestly, damages the souls of many healthcare workersas well.
Same here with the cataract surgery.
And I am wondering if one can arrange to slowly die of sadness WHILE eating blueberry cobbler.
Buckets of love to you and Sophie.
Years ago I took a course about chronic kidney failure and dialysis. What I didn't know then was how much of an impact chronic diseases have on a person and on their families. At the same time that I was taking this course, I was also training for a half marathon. I had a rigid schedule to follow, to ensure I would be able to complete the half marathon, that was eighteen weeks long. What I learned about myself is that I could not stick to that schedule, it was too hard, it affected every part of my life, even work. And then I started to have a glimmer of understanding of what it was like for patients living with a chronic illness that affected every part of their lives. The thing is, I quit after eighteen weeks and patients, and their families, couldn't quit.
You need help because nobody can do what you're doing indefinitely, it will break you, not because you don't love Sophie, but because you're a human being. If I was nearby, I would take some of your night shifts. The world is still too big at times.
I loved your honesty. I, too, am a minimizer to the outside world. I'm okay, really! when I am anything but. I relate to your exhaustion. But I was reminded of the importance of our writing and honesty. Through yours I feel less alone in the world, different circumstances, different struggles but the human experience is one we share at its core. I stand with you and Sophie, witness to your strength and endurance and deep, abiding love.
Oh dear Elizabeth. All these wonderful worlds to escape into while you're dealing with a reality most of us could scarcely imagine. Let alone recognise even through our wonderful words. There's reality and then there's Reality, with an upper case R. The really tough stuff that dogs you all the time. You do it with such grace. A trapeze artist indeed.
I am dazzled.
have missed you, too! you are a circus performer, par excellence... balancing the impossible and somehow making it hold together. admiration. admiration. not just for your performance but for the tender evocative authentic way in which you are able to observe report... here to listen...
There is so much here that just stopped me, gobsmacked me, made me ponder life's deeper truths. First off, that photo of Sophie in the doorway is extraordinary: it is art and heartbreak and faith, it is endurance and love, aching and beautiful. And these lines:
"The reality I’m putting up with would either shock or bore you, according to whatever level of life you’re playing."
"Why is it that every time I write of reality I feel compelled to minimize it, to make it better, to rush toward gratitude, to make sure that everyone out there knows that I know how privileged I really am? That I’m not slowly dying of sadness?"
I'm neither shocked nor bored, but dying of sadness with you, because today it feels to me that life is about wrestling sadness to the ground, again and again, and during some stretches we can't quite manage that feat, and so you attend to Sophie in her sitting up bed, and I applaud you for finding that workaround, but don't twist your body like a circus performer if you can help. Pain in the body and pain in the soul is another level of life entirely. I love you, my friend. I am gobsmacked by you.
I felt this - and I am never bored reading any of your words - Thank you.
“Why is it that every time I write of reality I feel compelled to minimize it, to make it better, to rush toward gratitude, to make sure that everyone out there knows that I know how privileged I really am? That I’m not slowly dying of sadness?”
My husband had the same reaction to his cataract surgery. He could always see close up without glasses and now half the time he can't remember he needs them to read etc. He rather have had them do it so he was as usual. He's really rather bitter about it. And all the drops at the beginning. At least, how many in which eye etc.
Nothing I can say about your high wire act with Sophie so I focus on what I know - eyes.
And there you and Sophie are! It is a somewhat strange world, she of the middle of the night (for me, at least), intimate “conversations,” honest and both real and Real communication, and all the resultant feelings and emotions that ensue. But it is 4 am here in Marblehead and I am in the tunnel between having been summoned awake by I’m not sure what, and deeply wanting/needing to be asleep again before I have to be up on my feet and deal with my day rather than swim in the remains of the day. Blueberry cobbler it is (perhaps with a dollop of real whipped cream?).
Thank you for coming.