ok i'm dead. so what? i partook of much wonder and beauty. you should be so lucky!
posted by Carolyn Hill at 11:56 PM
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brainhell
ok i'm dead. so what? i partook of much wonder and beauty. you should be so lucky!
I am a husband and father of two young children. On January 13, 2004, at 41 years old, I was diagnosed with a 100-percent fatal, presently incurable disorder called ALS. If you know me in real life, and I didn't personally invite you to read this blog, please send me an email about reading this blog.Etiquette for this blog
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Saturday, February 02, 2008
ok i'm dead. so what? i partook of much wonder and beauty. you should be so lucky!
BH died tonight at 8:40, at home, in peace. His wife and I were at his side.
He wanted me to post his official last words to you.
Like James Tiberius Kirk, he said, "It was fun."
He wanted me to post his official last words to you.
Like James Tiberius Kirk, he said, "It was fun."
posted by Carolyn Hill at 11:41 PM
Wednesday, January 23, 2008
Sunday, January 20, 2008
not his fault this time. could not spell 'fbv'(jaw thrust). knew he would do one when getting me up,.
posted by brainhell at 4:06 AM
Friday, January 18, 2008
POS BSOD
daughter wanted her mom, hectic with caretaking me due to sick caregiver, to hannd hber puzzlbbe pieces. she had only threeb left,then two, thebn ne. sad.
timbe to gebt severe on mr. hyde. not-fire him,, fix himmm. he said theb bell was too loud, took it away. pee was dnribbling on me as hbe held urinal, and i had POS say 'leaking.' he joked 'ygeah, u r taking a lebak.' when told him he spillbed p onn m e. H e s aid 'did i/ ' not 'sorry. ' he must think i'm soffft b/c nice. We shd havde his boss st ernly lecctur... And .
daughter wanted her mom, hectic with caretaking me due to sick caregiver, to hannd hber puzzlbbe pieces. she had only threeb left,then two, thebn ne. sad.
timbe to gebt severe on mr. hyde. not-fire him,, fix himmm. he said theb bell was too loud, took it away. pee was dnribbling on me as hbe held urinal, and i had POS say 'leaking.' he joked 'ygeah, u r taking a lebak.' when told him he spillbed p onn m e. H e s aid 'did i/ ' not 'sorry. ' he must think i'm soffft b/c nice. We shd havde his boss st ernly lecctur... And .
posted by brainhell at 8:46 AM
Thursday, January 17, 2008
yesterday i was battered. my wife had an import ant and stressful day pl anned but we h ad no caregiver. so she called an agency to send someone. WE MUST NEZER DO THIS AGAIN. my c aregiver told her how to take care of me. the ne w one began by curliing the kl eenex UP over my nose. could not t ell her nyhthing, she too stupiiid,loud.
posted by brainhell at 11:39 AM
Wednesday, January 16, 2008
ok 4 u to s ay fire mr. hyde, but he's PERfect compared to last night's idiot-fool.lll
posted by brainhell at 8:24 AM
Tuesday, January 15, 2008
r1thanksthanks for treating me well monday night. it must be hard with so little sleep. i apologize for the time i did ring-flip-flip-correct. sometimes i forget what i rang for, but i will try to make sure not to ring till i remember.
posted by brainhell at 8:19 AM
Monday, January 14, 2008
he started out being my best night caregiver. he calls me 'the best in the west' sans irony, and agrees when i say i respect him and would never play games. but once i am helpless in bed, his anger mounts as he accuses me of ringing the bell to toy with him. it frightens me. l wonder if he knows that when he does this, he is acting like the mean rich people told me about. i want to work with him, not ask the agency for someone else.
posted by brainhell at 7:45 AM
Sunday, January 13, 2008
tried thhis:
at 2:38 he seemed furious with himself for agggreeing to this. at 5:30 i had to pee. he had put the card where it could barely ring the bell. i flailed and it made weak dings. i tried my shriek, but he did not wake. the diaper leaked as per usual.
when he snorted on waking, i shrieked and he got me up. splayed uncomfortably in the wc as he put dry clothes on me, i was gifted with his words:
"you choose this, not me. you want to make it hard, what can i do?"
pls come every time i ring, even if u think i am asleep.
]and please no jokes about words i point. just try to help.
it is iimpossible foe to reach all of the card. u may havve to move it to where my fingers are.
at 2:38 he seemed furious with himself for agggreeing to this. at 5:30 i had to pee. he had put the card where it could barely ring the bell. i flailed and it made weak dings. i tried my shriek, but he did not wake. the diaper leaked as per usual.
when he snorted on waking, i shrieked and he got me up. splayed uncomfortably in the wc as he put dry clothes on me, i was gifted with his words:
"you choose this, not me. you want to make it hard, what can i do?"
posted by brainhell at 7:00 AM
Saturday, January 12, 2008
my best day- caregiver, the one w ho got the 25 -percennt raise, has since about thhat time,,, develooped abn attachment to the idea that i disrespect him. he will quit after goking home on a visit. but he is also attached to thinking of hims elf as v ery getle.lll
posted by brainhell at 8:08 AM
Friday, January 11, 2008
Thursday, January 10, 2008
Wednesday, January 09, 2008
at two she told me she wd get me up to avv oid hving to constnbantly mv me.
she lied to u.
i had several chalvazions surgically remov ed from eyelids in '90s before married. optham dr. said 's crub the hell out of them' with hot wet towel to forfend. it worked. bbut now socrippled i can;'t. the thing on my right lid is likely a chalazion. . I TRUST ONLY U TO SCRUBBB MY LIDS.
thx for fixing kybd tray. it hurts when they try jamit back on when s w iveled out.
very too hard type this . will soon be 'locked in' WRT hands but i hope not blinks.i love you and thank you.
she lied to u.
i had several chalvazions surgically remov ed from eyelids in '90s before married. optham dr. said 's crub the hell out of them' with hot wet towel to forfend. it worked. bbut now socrippled i can;'t. the thing on my right lid is likely a chalazion. . I TRUST ONLY U TO SCRUBBB MY LIDS.
thx for fixing kybd tray. it hurts when they try jamit back on when s w iveled out.
very too hard type this . will soon be 'locked in' WRT hands but i hope not blinks.i love you and thank you.
posted by brainhell at 7:32 AM
Tuesday, January 08, 2008
if u haveALS and u read this blog, pls comment yiour diagnosis date.
posted by brainhell at 10:39 AM
Contributors
I am a husband and father of two young children. On January 13, 2004, at 41 years old, I was diagnosed with a 100-percent fatal, presently incurable disorder called ALS. If you know me in real life, and I didn't personally invite you to read this blog, please send me an email about reading this blog.
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daily
lft
venerable
sis river mtn busy ugga esl 2 coan
defunct?
moja goz bm cdn sgm no bj
duly noted
sb at dliz st ram iws ltg am mb cic uno ot
recently noted
gp sar fun es e gsm flu zof dig tkw jo kos rg gi or jt bhc gg mld rbb cc usa fi ch fw k gs fots sfod dt hlb mc ts pc
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