Dear friend, I've read so many of your words over the years (close to half of all 60 of them), and I'm continually astonished, moved, and grateful. But this one....my god.
Blown away by your writing. You’ve managed to convey the emotions and thoughts of what is surely and painfully indescribable. Putting one foot in front of the other and doing what has to be done. Sending love to you and darling Sophie.
I hate that word irritable. I hate how irritability is a catch-all for all the discomforts they can't explain or can't be bothered to even attempt to figure out. I hate the meds for my son approved "for irritability associated with autism" and although they've helped, no one knows why, no one really knows how they make him feel and that's irritating.
and this - "I remember she was surprised every time the needle went in, her mouth a little o and the scream so urgent I learned what would become second nature — how to be alert, calm and dissociated." It made me realize how often I think I'm doing so well being "non-reactive" in whatever crisis we're managing but maybe that's not what this is. Thank you for your words.
"Irritable." Like calling what we call anxiety, "anxiety." Oh, I was feeling a little irritable. Oh, I was feeling a little anxious.
We just don't have the right language for some things, do we?
And what was that supposed to mean? "You have to see what you are tolerant of." Could you tolerate only up to a certain point and then...WHAT? As if there was a choice or something.
The trach probably has a inflatable cuff that helps to keep it in place, that plus the ties around Sophie's neck. Something touching my chin all the time would drive me crazy. Doctors don't seem to understand that people still need to live, or at least, some doctors. There are good doctors.
Modern medicine seems to ignore the patient, in favour of the treatment. I dread the arguments I will have with doctors as I age and become more dependent on modern medicine to keep my body going. Perhaps I should learn new swear words now, so that they are firmly in place by the time I need them:)
My patient is in the hospital again. For EEG monitoring. Thank you. That cap near the chin means everything! There’s room for compassion, empathy, tears in medicine. It’s vital.
This is stunning. Oh God, Elizabeth, that cap hitting her chin would make me insane. How easy it is for the ones who don’t lie next to Sophie, screaming then, humming then, quiet beneath the moon now, how easy it is for them to tell you how it is, how it will be. They should read this. I wish they would.
Dear friend, I've read so many of your words over the years (close to half of all 60 of them), and I'm continually astonished, moved, and grateful. But this one....my god.
Blown away by your writing. You’ve managed to convey the emotions and thoughts of what is surely and painfully indescribable. Putting one foot in front of the other and doing what has to be done. Sending love to you and darling Sophie.
Xoxo
Barbara
Devastating. Love to you and Sophie love to all of you.
I hate that word irritable. I hate how irritability is a catch-all for all the discomforts they can't explain or can't be bothered to even attempt to figure out. I hate the meds for my son approved "for irritability associated with autism" and although they've helped, no one knows why, no one really knows how they make him feel and that's irritating.
and this - "I remember she was surprised every time the needle went in, her mouth a little o and the scream so urgent I learned what would become second nature — how to be alert, calm and dissociated." It made me realize how often I think I'm doing so well being "non-reactive" in whatever crisis we're managing but maybe that's not what this is. Thank you for your words.
"Irritable." Like calling what we call anxiety, "anxiety." Oh, I was feeling a little irritable. Oh, I was feeling a little anxious.
We just don't have the right language for some things, do we?
And what was that supposed to mean? "You have to see what you are tolerant of." Could you tolerate only up to a certain point and then...WHAT? As if there was a choice or something.
Well.
That is a beautiful picture.
"You have to see what you are tolerant of." This leaves me speechless, though I know it's not uncommon. Though though though. Though nothing.
The trach probably has a inflatable cuff that helps to keep it in place, that plus the ties around Sophie's neck. Something touching my chin all the time would drive me crazy. Doctors don't seem to understand that people still need to live, or at least, some doctors. There are good doctors.
Modern medicine seems to ignore the patient, in favour of the treatment. I dread the arguments I will have with doctors as I age and become more dependent on modern medicine to keep my body going. Perhaps I should learn new swear words now, so that they are firmly in place by the time I need them:)
She has a cuffless trach. The tie keeps it there which is weird enough.
My patient is in the hospital again. For EEG monitoring. Thank you. That cap near the chin means everything! There’s room for compassion, empathy, tears in medicine. It’s vital.
This is stunning. Oh God, Elizabeth, that cap hitting her chin would make me insane. How easy it is for the ones who don’t lie next to Sophie, screaming then, humming then, quiet beneath the moon now, how easy it is for them to tell you how it is, how it will be. They should read this. I wish they would.