I love you and your letters. I wish I could stop time in that clinic and sit everyone down in a circle, take away their phones and other devices, and ensure their rapt attention while it was read aloud to each and every one of them who has ever been a gatekeeper for services (which is likely all of them). I wish I could make them sit in silence afterward and squirm with discomfort and let your words settle like nettles on their skin until someone got angry enough to stand up and rally them all with a cry of "This is bullshit! We can't operate like this anymore! What are we going to do?" But since that's not an option, I will hug you from afar and set my jaw in rage with yours and imagine you laughing that maniacal laugh while you bake something divine. I adore you.
What are we going to call these times in the future, you ask. We are in the age of fragile masculinity but psssst, don't tell, they think the solution is being aggressive, tough, violent and condescending.
I cannot imagine the frustration you have surely experienced in Sophie's lifetime. I think your message is indeed sharp and focused and I would wish that the neurologist who reads it will take note and perhaps even open his eyes. Do I think it will happen? Not really. Do I think you did the right thing? Without doubt.
It’s more than frustrating and heartbreaking to read about the abject negligence of the medical teams you are trying to navigate. I saw my sister and her daughter in your words. Our Andrea was a prisoner in her own world. The expense, travel, hospitals and clinics were endless.
Fight this brave fight, Elizabeth. I know you keep strong for Sophie. Be allowing of your fear, hatred of these desolate times. We own them so as not to allow them to own us. I sometimes feel that God in heaven does not exist, but Truth and Hope reside in pockets of our world that we discover because of our hope, faith, and resilience. You are fighting the good fight. Allow anger to be your friend. Too many feel it as a negative, but it has the ability to carve paths we had not known, existed.
All I can think of now is practicing Mrs. Braddock's laugh. To practice and perfect. To throw my head back with total unrestrained abandon. To scare the bejesus out of anyone not realizing this is the response of the moment: Banshees, Amazons, Sirens. Shrews, Harridans, unite.
Dearest E. I will be in your fair city tomorrow night and I might just call you to smooze...and to hear your gorgeous suthin' accent. As for the health (sic) care (sic) system (sic), I know, having recently and for a long ass time, dealt with it as a provider. I would use my magisterial voice when advocating for my clients because, well, because I had too. Spending three HOURS to find a hospital to send someone in labor to, we would just call an ambulance even though it was 'an inappropriate use of resources'.bla bla bla. I can hardly wait for them to continue to fuck with essential services for women, kids, the elderly, the disabled, etc etc.
I take heart from your steadfastness. Because of your tenacity and clarity, I feel less lost in the dark of these times. Too many of those I hold dear are fighting for reasonable, honorable care. I know you won’t stop. I believe a way - THE person - will be found. Love and a thousand blessings.
I am so angry for you I can hardly see straight but I know the underside of that feeling is such ineffable sadness that you have to fight so hard for Sophie and still hit walls of indifference, laziness, ignorance and people with no sense to imagine walking an inch much less a mile in Sophie’s and your shoes. I wish our world were better than this. I know you will keep on. We are here, a chorus around you, with arms to catch you in those moments when you just need to rest for a bit before sallying forth once more. Hugs, dear friend. That was a great letter.
I honor and appreciate you Elizabeth. For all the things you do for Sophie and your boys, and for all the things you will do for them. And for the generosity of spirit that drives you to write and send us these missives. It burns me how people are treated in medical settings, especially nowadays. Working with older adults my sessions with them almost always involves some failure of the system. But on we March.
Mommy says, it's just impossible to find someone who will see you anymore, I've had dystonia for years and six years ago unfortunately went blind from a seizure. Lack of oxygen they say. One of the last doctors who took an EEG test in his office I remember that it was cut short as he marched in making clicking noises with his mouth, I don't help little girls with LGS, my Mom said she doesn't have a diagnosis of that he said it looks like it. Somebody missed something somewhere. The Russian doctor can't do anything, nobody can seem to, thus here I am just as I am. Limited on resources for other doctors because my Dad left and didn't consider what the complications of insurance would be. I don't know what to say about the Patriarchy, I know bad and good men.....I think political parties, both are differently messed up in different ways.
And I am angry at people sometimes. Kinda a lot of anger but it doesn't help me personally.
It’s all too much, isn’t it though? I read a little blip the other day about “Bless their hearts”. How in these times, let’s reframe it with what we really mean. Which is “F’off”. At least that’s how I feel. Love you friend.
I love you and your letters. I wish I could stop time in that clinic and sit everyone down in a circle, take away their phones and other devices, and ensure their rapt attention while it was read aloud to each and every one of them who has ever been a gatekeeper for services (which is likely all of them). I wish I could make them sit in silence afterward and squirm with discomfort and let your words settle like nettles on their skin until someone got angry enough to stand up and rally them all with a cry of "This is bullshit! We can't operate like this anymore! What are we going to do?" But since that's not an option, I will hug you from afar and set my jaw in rage with yours and imagine you laughing that maniacal laugh while you bake something divine. I adore you.
What are we going to call these times in the future, you ask. We are in the age of fragile masculinity but psssst, don't tell, they think the solution is being aggressive, tough, violent and condescending.
I cannot imagine the frustration you have surely experienced in Sophie's lifetime. I think your message is indeed sharp and focused and I would wish that the neurologist who reads it will take note and perhaps even open his eyes. Do I think it will happen? Not really. Do I think you did the right thing? Without doubt.
It’s more than frustrating and heartbreaking to read about the abject negligence of the medical teams you are trying to navigate. I saw my sister and her daughter in your words. Our Andrea was a prisoner in her own world. The expense, travel, hospitals and clinics were endless.
Fight this brave fight, Elizabeth. I know you keep strong for Sophie. Be allowing of your fear, hatred of these desolate times. We own them so as not to allow them to own us. I sometimes feel that God in heaven does not exist, but Truth and Hope reside in pockets of our world that we discover because of our hope, faith, and resilience. You are fighting the good fight. Allow anger to be your friend. Too many feel it as a negative, but it has the ability to carve paths we had not known, existed.
❤️
All I can think of now is practicing Mrs. Braddock's laugh. To practice and perfect. To throw my head back with total unrestrained abandon. To scare the bejesus out of anyone not realizing this is the response of the moment: Banshees, Amazons, Sirens. Shrews, Harridans, unite.
Oh my god, yes. Let's start a revolution.
Dearest E. I will be in your fair city tomorrow night and I might just call you to smooze...and to hear your gorgeous suthin' accent. As for the health (sic) care (sic) system (sic), I know, having recently and for a long ass time, dealt with it as a provider. I would use my magisterial voice when advocating for my clients because, well, because I had too. Spending three HOURS to find a hospital to send someone in labor to, we would just call an ambulance even though it was 'an inappropriate use of resources'.bla bla bla. I can hardly wait for them to continue to fuck with essential services for women, kids, the elderly, the disabled, etc etc.
Ok, vented my spleen for today.
I love you and Sophie. You are heroes.
XXXX Beth
I take heart from your steadfastness. Because of your tenacity and clarity, I feel less lost in the dark of these times. Too many of those I hold dear are fighting for reasonable, honorable care. I know you won’t stop. I believe a way - THE person - will be found. Love and a thousand blessings.
Bless. Their. Hearts.
It is amazing to read your beautiful writing wrapped around such a sad story
So tough, this endless fight. For care and justice and equitable treatment for Sophie and everyone else. Scary the health world in the US.
I am so angry for you I can hardly see straight but I know the underside of that feeling is such ineffable sadness that you have to fight so hard for Sophie and still hit walls of indifference, laziness, ignorance and people with no sense to imagine walking an inch much less a mile in Sophie’s and your shoes. I wish our world were better than this. I know you will keep on. We are here, a chorus around you, with arms to catch you in those moments when you just need to rest for a bit before sallying forth once more. Hugs, dear friend. That was a great letter.
I honor and appreciate you Elizabeth. For all the things you do for Sophie and your boys, and for all the things you will do for them. And for the generosity of spirit that drives you to write and send us these missives. It burns me how people are treated in medical settings, especially nowadays. Working with older adults my sessions with them almost always involves some failure of the system. But on we March.
Mommy says, it's just impossible to find someone who will see you anymore, I've had dystonia for years and six years ago unfortunately went blind from a seizure. Lack of oxygen they say. One of the last doctors who took an EEG test in his office I remember that it was cut short as he marched in making clicking noises with his mouth, I don't help little girls with LGS, my Mom said she doesn't have a diagnosis of that he said it looks like it. Somebody missed something somewhere. The Russian doctor can't do anything, nobody can seem to, thus here I am just as I am. Limited on resources for other doctors because my Dad left and didn't consider what the complications of insurance would be. I don't know what to say about the Patriarchy, I know bad and good men.....I think political parties, both are differently messed up in different ways.
And I am angry at people sometimes. Kinda a lot of anger but it doesn't help me personally.
The news has swallowed my heart this morning. I send what’s left of it to you both, to you all, for whatever that’s worth.💔
You are a warrior.
It’s all too much, isn’t it though? I read a little blip the other day about “Bless their hearts”. How in these times, let’s reframe it with what we really mean. Which is “F’off”. At least that’s how I feel. Love you friend.