watching youtube videos. things i want still to do. i still want things. i still miss things. everything is much harder. need oxygen so my heart doesn’t have to work so hard. watch people with wild animals. always wanted to do that. watching comedy. kate mackinnon. watching peoples hands. when i dream, mine are still like that.
dreams about food. sometimes bad, others just strange. today wanted to eat.crushed ice to drink better than popsicles.
i miss fashion think about clothes i won’t get to wear. and things i won’t get to build. and home in los angeles. i didn’t guess that i would be lost in england. always thought it would be the other way around. recurring nightmare i had for years. lost in familiar places. like pico boulevard. but everything i built gone and i forgot where i was supposed to go. or the beach. where no one was there and i couldn’t tell if i was north or south.
it is christmas time. i always liked christmas. lights and decorating the tree. presents. nice food.
if i was well i would bake a cheesecake. and cookies for the neighbours. and i’d figure out something for a nice dinner. and i would be able to eat it all. and when i’d go to bed it would be soft and my muscles would relax, instead of stiffening up and hurting. i’d find something nice to wear and g and i could have a party. we could drive to costco and get a cake that i like. we could put out starters and i could make lasagna or chicken skewers and rice. we could invite our neighbours and friends.
then i could fly home. and feel the sun.
from an article in the guardian today
I now recognise that the whole project of sharing our Christmas was flawed, and it taught me a salutary lesson. It taught me something about what could be termed benefaction. Caring can lead us to expect the objects of our care to be gracious in their receipt of our largesse, to accept unreservedly our support; essentially, to know their place.
And when they don’t, when the victim refuses to submit to their victimhood, when they insist instead on retaining ownership, they challenge our charity and we take offence. What I learned, that shameful Christmas, is that charity, care, whatever you call it, is essentially a two-way process, in which the recipients may be victims to us, but they are desperately seeking to restore the selfhood that the slings and arrows of outrageous fortune have eroded.
That is their right and, while we are distributing the Ferrero Rocher, it behoves us to pay attention. There’s a lesson for the 1% in there somewhere.”
AND A LESSON FOR THE HOSPICE CHARITY MOVEMENT TOO. ITS WHY K FINDS ME SO OBJECTIONABLE AND BULLDOZES THROUGH MY EXPRESSED INTENT TO KEEP OWNERSHIP OF MY LIFE AS AGAINST HER COMFORT ZONE. THEY GET OFFENDED AT MY INTERROGATION OF THEIR ILLOGICS. AND ARE FRUSTRATED BY MY FIGHTING TO KEEP MYSELF IN MY OWN TERMS INSTEAD OF GRATEFULLY SUBMITTING AS A COMPLIANT PATIENT. THEY WANT TO FEEL GOOD ABOUT WHAT THEY ARE DOING. AND I MAKE THAT DIFFICULT.
d thought my last post was harsh. yes. she is right. i was harsh. palliative care is doing their best within constraints they are bound by. maybe believe in too. they can’t stop me being a hostage. if i want to move, i have to ask and then wait each time. not anyones fault. just how it is. they say we can give you drugs within reasonable limits. i ask, what defines reasonable? it upsets them. C was equivocal. maybe how she feels. maybe constraints of her position. i got angry. festering with it. but not necessarily at anyone. just angry. So am sorry to have been harsh.
the problem is i don’t want to die. but am anyway. i want to stop it. I’m fighting unconsciousness. i wont have peace or acceptance. there are bad ways to die. this is one of them. i resent dying. i resent having my day to day everything in other peoples hands. people like me make demands. we don’t want to wait because waiting is itself a galling loss of selfhood. you fucking wait i want to say. but know that this is unfair and ugly. but also the truth. who wants to loose all the minutia that add up to autonomy. self respect. self definition.
so in a way I’m not sorry. and am sorry about that.
likely my last entry. can’t be sure. but want to get this down. thinking about it since palliative doctor, C’s visit. i asked for propofol sedation as this drug i know and it kicks you out totally and without thoughts. she said it was illegal in uk. this is illogical. i didn’t say kill me with it, even though i think they should just sedate me with a drug i can tolerate that won’t leave me looking sedated to outside world, buy in terror in my head.
i am angry beyond measure. C said well the law is trying to protect people from feeling pressure to die. Well fuck that because it is fine with forcing people to live in suffering. why is that pressure ok? and to the so called ‘disability rights’ activists who oppose assisted dying. i want to say to you that you are all selfish assholes. This is not about you. its about people like me who are in fact dying. everything is not about you. this is not a euthanasia issue, i am dying anyway. it is no more euthanasia that abortion. this is my body and my rights over it. you claim this for yourselves but deny it to others to serve your paranoia and issues that are not germane to this situation. get over your damned selves. you aren’t entitled to other peoples lives. like the anti abortion lot, you are moralising, selfish people who think the world should be defined by you. if you don’t want assisted dying for yourself. then don’t ask for it. you stupid awful people. i suspect i am not the only person like me hates your guts and hopes you are cursed to your own stupid politics. i hope somehow this message gets to you. you are bad people. and someone is telling you this to your faces. maybe you could think about what i am saying. though i doubt you will. i hate you even more than the vacuous oligarchs and religious types who also oppose assisted dying because of equally specious politics. it won’t affect them. or they think people should be forced to live to spare them grieving or facing that people die (I’m speaking to you giles fraser – whose writing i mostly like – but you are criminally wrong on this issue). but the disability rights people — i support your rights for self determination. so the lack of reciprocity enrages me.
so my last words are not nice. they are angry.
I have many thank yous. But too late now. Cant get the list straight. Headache wracking my head. just want to sleep. Feeling bad about this. many people to thank and say last words to. But too late. Waited too long.
love to g.
GP just left. not clear if i have a bowel obstruction. if so, not clear what to do. very bad news if so. She is calling palliative care to discuss with them. All this talk.
J and C moving today. very sad day.
Watching Jesus Christ Superstar again. trying to pass the time. inspired musical from choreography to multiethnic casting, to musical arrangement and cinematography. Andrew Lloyd Webbers best work. interesting subtextual love stories visualised among apostles, between judas and jesus. hippy aesthetic. ‘now we are decided’ a powerful comment on how power struggles play out.
My mom and brother had to leave this morning and I feel so awful about it i am beside myself. i don’t want them to go. i feel devastated to say goodbye.
everything is so awful but it doesn’t end. i want it to end. now some kind of bowel obstruction. painful. makes me sick. cough much worse. fear of smothering. no world left. can’t think about the world. stopped caring. am afraid to take it into my hands. don’t know how. afraid to make it worse. wish i could be in induced coma with propofol, then finished off. fast. without more pain. no more fear. no more gasping for air in panic. just done.
L sent this link. i guess i still care about some things.