happy valentines day!
mine started with strawberry red vomit all over me, my light colored couch and my rug. it was followed by zoe not doing her work, hiding, then not responding to me calling her multiple times- and me, finding her, snatching her stuffed hello kitty valentines gift out of her hands and bonking her on the head with it. not good. it's been this way because everything bryn sips he throws up- and i woke up and still had my cold-foggy head, demi moore voice and all, and a 'vestibular migraine' which means my balance is off and the room is spiny (and the neurologist said not to take the migraine medicine if that happens because i might have a stroke- that's really what he told me). and because i need to work on my talk for tomorrow- my talk for work- my talk about homelessness and palliative care.
"so today we're going to talk about the intersection of homelessness and palliative care. and this is really fun for me- because it's the intersection of two of my passions. when i was a research fellow- i published a paper on housing instability and homelessness, and access to health care......."
back in the days of san francisco- the days when i was a doctor and quite possibly going to be a research oriented academic doctor- back when i was just pregnant with jude- before the knowledge of good and evil- before my life with zoe fell to bits.........back in the days with out a diagnosis, back when she was not-reactionary over everything- when she was flexible- when she wasn't ever mean (really)- when i had my own life- when she was in childcare from 7:30-5:30- in her life- back in the days before we needed medications, before we needed special schools, before we were kicked out of the special school, before i lost myself in her life- in her world- before mine began to fade away.
"and now i do palliative care- end of life care- care for people who's illness doesn't have a cure."
is that what i do? it is - day in and day out. not just on fridays- because this stuff we deal with at home- this stuff she deals with everyday- it doesn't have a cure (even off gluten and dairy- better, not cured). it's living with a life threatening disease- depending on how you define 'life'- depending on how you define 'disease' or 'dis- ease'.
"so lets think about what these things are separately- what is homelessness? who are the homeless? and what do people need and want at the end of life? how do we do palliative care? and then lets think about their interaction- about what might be unique and challenging about delivering palliative care to the homeless- what barriers must we address- what things do we need to think about differently?"
lets think about my life even 6 years ago, five or four years ago- other lifetimes ago it can seem- in those times when i studied people with out homes. there was still struggle, yes- there was unknown- but it wasn't like these years. it wasn't foot stomping, tantrum throwing, wailing- because you can't go to your friends house. and you can't go because your poor little brother is vomiting his guts out- and your mom (who should have been writing her talk) can't leave his little side. those were the days when even if you couldn't empathize with him- you didn't get angry and explosive.
what do people want at the end of a life? how do we provide palliative care? how do people live with life altering- life damaging- career wrecking change? the end of a life. a life style. an expectation. life as we knew it. to palliate means to cloak- to cover, to protect. is that what we're doing here? what i'm doing? not today.
it's 2:30- someone is snoring beside me after having the dry-heaves- and someone else is upstairs having lost hello kitty, and all her american girl dolls because of her absurd over reaction to not being able to go to her friends house today. because of her unwillingness to at least try to be sensitive to her sick brother. because of her storming upstairs yelling, "i just can't take change!"
oh really??
really?
tough. because life is what happens when your busy making other plans. because life is change. because if you want to talk about having to adapt to change zoe- lets talk.
so he slept and she came down stairs and we talked about change- about the naturalness of it- the constancy of it, whether we like it or not. we talked about trees and seasons- about what happens to the leaves in fall and winter and spring and summer- about the loss in the change and what you gain in the change- how you can't have one without the other. that plans changing can be disappointing- but there is always another opportunity. when a door is closed- somewhere a window opens. and then i started listening to what i was saying, and i started believing it, and i stopped feeling so sorry for myself.
she said it was hard. that she didn't know how to adapt to change. i told her it's about making a choice- it's about how you look at it- what you focus on. do you choose the sadness of the lost leaves or anticipate the buds of spring? do you choose to stay in that angry place of not getting to see your friend or do you make new plans for the afternoon? do you twirl and twirl over what you thought you'd get and didn't or do you embrace the gifts that surround you now- different as they are, changed though they may be?
i'll choose to embrace.
happy valentines day!
mine started with strawberry red vomit all over me, my light colored couch and my rug. it was followed by zoe not doing her work, hiding, then not responding to me calling her multiple times- and me, finding her, snatching her stuffed hello kitty valentines gift out of her hands and bonking her on the head with it. not good. it's been this way because everything bryn sips he throws up- and i woke up and still had my cold-foggy head, demi moore voice and all, and a 'vestibular migraine' which means my balance is off and the room is spiny (and the neurologist said not to take the migraine medicine if that happens because i might have a stroke- that's really what he told me). and because i need to work on my talk for tomorrow- my talk for work- my talk about homelessness and palliative care.
"so today we're going to talk about the intersection of homelessness and palliative care. and this is really fun for me- because it's the intersection of two of my passions. when i was a research fellow- i published a paper on housing instability and homelessness, and access to health care......."
back in the days of san francisco- the days when i was a doctor and quite possibly going to be a research oriented academic doctor- back when i was just pregnant with jude- before the knowledge of good and evil- before my life with zoe fell to bits.........back in the days with out a diagnosis, back when she was not-reactionary over everything- when she was flexible- when she wasn't ever mean (really)- when i had my own life- when she was in childcare from 7:30-5:30- in her life- back in the days before we needed medications, before we needed special schools, before we were kicked out of the special school, before i lost myself in her life- in her world- before mine began to fade away.
"and now i do palliative care- end of life care- care for people who's illness doesn't have a cure."
is that what i do? it is - day in and day out. not just on fridays- because this stuff we deal with at home- this stuff she deals with everyday- it doesn't have a cure (even off gluten and dairy- better, not cured). it's living with a life threatening disease- depending on how you define 'life'- depending on how you define 'disease' or 'dis- ease'.
"so lets think about what these things are separately- what is homelessness? who are the homeless? and what do people need and want at the end of life? how do we do palliative care? and then lets think about their interaction- about what might be unique and challenging about delivering palliative care to the homeless- what barriers must we address- what things do we need to think about differently?"
lets think about my life even 6 years ago, five or four years ago- other lifetimes ago it can seem- in those times when i studied people with out homes. there was still struggle, yes- there was unknown- but it wasn't like these years. it wasn't foot stomping, tantrum throwing, wailing- because you can't go to your friends house. and you can't go because your poor little brother is vomiting his guts out- and your mom (who should have been writing her talk) can't leave his little side. those were the days when even if you couldn't empathize with him- you didn't get angry and explosive.
what do people want at the end of a life? how do we provide palliative care? how do people live with life altering- life damaging- career wrecking change? the end of a life. a life style. an expectation. life as we knew it. to palliate means to cloak- to cover, to protect. is that what we're doing here? what i'm doing? not today.
it's 2:30- someone is snoring beside me after having the dry-heaves- and someone else is upstairs having lost hello kitty, and all her american girl dolls because of her absurd over reaction to not being able to go to her friends house today. because of her unwillingness to at least try to be sensitive to her sick brother. because of her storming upstairs yelling, "i just can't take change!"
oh really??
really?
tough. because life is what happens when your busy making other plans. because life is change. because if you want to talk about having to adapt to change zoe- lets talk.
so he slept and she came down stairs and we talked about change- about the naturalness of it- the constancy of it, whether we like it or not. we talked about trees and seasons- about what happens to the leaves in fall and winter and spring and summer- about the loss in the change and what you gain in the change- how you can't have one without the other. that plans changing can be disappointing- but there is always another opportunity. when a door is closed- somewhere a window opens. and then i started listening to what i was saying, and i started believing it, and i stopped feeling so sorry for myself.
she said it was hard. that she didn't know how to adapt to change. i told her it's about making a choice- it's about how you look at it- what you focus on. do you choose the sadness of the lost leaves or anticipate the buds of spring? do you choose to stay in that angry place of not getting to see your friend or do you make new plans for the afternoon? do you twirl and twirl over what you thought you'd get and didn't or do you embrace the gifts that surround you now- different as they are, changed though they may be?
i'll choose to embrace.
happy valentines day!
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