Death and disability

[matisse]

jturk's thread where he mentions death is something that I have thought about recently. Here is a cut/paste thread I started in the regular disability board where I am member. Disability has an insidious way of accelerating death. I don't think my wife has really focused on that, but I have. I am assuming I will not be around to enjoy retirement. I think Carpe Diem has a different meaning for me than for most ABs, who have not pondered their mortality in any serious way.

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I had occasion to ponder this the other day. I slipped up in getting dressed and ended up on the floor for about 4 hours until my family got back from the amusement park. I had a concussion and a black eye as a result of the fall--nowhere near death, but as I was laying there, it occurred to me that if I had fallen in such a way that I landed in a position that made it physically difficult for me to breathe, I wouldn't have made it.

I'm not particularly scared of death, I think I have had a good life and I don't have regrets of any significance. But I would really rather not die from something that is directly caused by my disability, like a fall, or having my chair stuck on a train track, or a fire with no one to help me out of bed. I would prefer to die in a more normal way, like a heart attack, car accident, etc.

Has anyone else had thoughts about how they want to kick the bucket?

[Deleted]

I think I'm pretty lucky in that besides the missing limbs I have no underlying health issues.

I don't worry about death at all. It's gonna happen one day and that's it.

As far as how I'd like to die? Quickly in old age, but not so old that I'm bedridden and bitter.

[jturk]

I tend to not think about that too often, at least for the way my mind works it never seemed a helpful line of thinking. But if I have to go and we all do, I wouldn't mind if it happened during sex... funny response? maybe but I'm dead serious. However I don't think the person I'm having sex with would really appreciate that so I just hope it's not at a young age and it's not too difficult of an experience. One way I definitely don't want to die is in some ironic way shortly after being effectively cured of my condition. Like walking out of a rehab hospital and getting hit and killed by a wheelchair company van.

[Ximena]

Oct 18, 2013 14:56:01 GMT -5 jturk said:

I tend to not think about that too often, at least for the way my mind works it never seemed a helpful line of thinking. But if I have to go and we all do, I wouldn't mind if it happened during sex... funny response? maybe but I'm dead serious. However I don't think the person I'm having sex with would really appreciate that so I just hope it's not at a young age and it's not too difficult of an experience. One way I definitely don't want to die is in some ironic way shortly after being effectively cured of my condition. Like walking out of a rehab hospital and getting hit and killed by a wheelchair company van.

Not to derail this thread (which is an excellent one, btw, matisse), but that made me think of the part of Mrs. Doutbfire where "she" is telling about how "her" supposed husband died:

"Ah, as I hold this cold meat, I'm reminded of Winston."
"How did he pass?"
"He was quite fond of the drink. 'Twas the drink that killed him."
"Oh, he was an alcoholic? How tragic."
"No. He was hit by a Guinness truck. So it was quite literally the drink that killed him."

[ironsky]

Death is part of life. I've learned not to dwell on it, as such, life is for the living. When my time comes, I hope it's not in public, and it's peaceful. I have asked for a jazz funeral and no one wear black.

[Pony]

Great thread, Matt!!! I think this might be virgin territory on here, but this is something that lies on my back burner of thought. I'm pretty healthy, or so I think...u never really know what's brewing on inside...i know when I get sick, I REALLY get sick! I never get a 'mild' anything. And there's the threat of falling like u did, which blows my mind to think u laid there four hours, Jesus...it's 33 years post injury now, and i'm still kicking it, but i can never be certain something crazy won't happen and kill me. i sure see peeps my age getting shit..my cousin with Cancer, my sister died of breast cancer, so I could eventually have something happen. My prediction is I'll probably bite it from lung infection. I really feel like i'm close to death when i get sick sometimes. About a month ago i was very sick, had fever, feeling cold inside, so i went in my van...turned on heat full blast for 45 mins. I started feeling weird, turned off van, tried to get out, but started passing out...didn't want to fall out of chair - i was alone. I managed to call 911...barely able to speak, i told her hurry. By the time they got here i was regaining normalcy. but this got me thinking how vulnerable i am at times.

[jturk]

Oct 18, 2013 15:10:17 GMT -5 Pony said:

Great thread, Matt!!! I think this might be virgin territory on here, but this is something that lies on my back burner of thought. I'm pretty healthy, or so I think...u never really know what's brewing on inside...i know when I get sick, I REALLY get sick! I never get a 'mild' anything. And there's the threat of falling like u did, which blows my mind to think u laid there four hours, Jesus...it's 33 years post injury now, and i'm still kicking it, but i can never be certain something crazy won't happen and kill me. i sure see peeps my age getting shit..my cousin with Cancer, my sister died of breast cancer, so I could eventually have something happen. My prediction is I'll probably bite it from lung infection. I really feel like i'm close to death when i get sick sometimes. About a month ago i was very sick, had fever, feeling cold inside, so i went in my van...turned on heat full blast for 45 mins. I started feeling weird, turned off van, tried to get out, but started passing out...didn't want to fall out of chair - i was alone. I managed to call 911...barely able to speak, i told her hurry. By the time they got here i was regaining normalcy. but this got me thinking how vulnerable i am at times.

I think in reality the line between life and death is much closer than many of us realize. I think that's highlighted for people with various disabilities but I think it's true of everyone. When we feel sick that really is our body fighting to stay alive. I would have to agree that respiratory issues though are definitely what have made me most aware of the fragility of life. But along with that fragility there is that amazingly powerful will to live, such an interesting dichotomy.

[matisse]

I guess for the devs the Q would be whether they have given thought to the likelihood that they would outlive their wheeler by a fairly wide margin.......

[lavly]

i just read the other theard before i read this one and yeah wow ... really good discussion matisse.

im not scared of anything ... but i am scared of failing in life. so as j said in the other thread its not dieing that scares me its the idea that i wont get done what i need to do before i die.

on a side not to your last question. "given thought to the likelihood that they would outlive their wheeler by a fairly wide margin" its weird cos even though i see wheelers as way stronger the ab (i dont adhere to the wheelers are weak / sick clicha) im always worried about my wheeler dude dieing.

i dont have this weird ass fear with ab guys or anyone else but i have noticed that everytime im with a dude in a chair i have this erashinal fear of death. ( i do mean erashinal. cos most of the guys i have been with are paras that have been young and way healther then me) having said that i have talk to a few guys on line that have passed away. so maybe that has gone into my subconsios somewhere.

so a lil story to show you how nuts i am.

its late at my place... and i am about to catch my zzz ... from my bed / floor i call my dude to say goodnight ... when the phone is answered it sounds all muffuled and distent.

me :" hello ... hello ... babyyy??" then i hear my dude dad on the other side of the phone ... his voice is oviously broken and it sounds like his been crying .

him: " hello ... who is this ... hello" i tell him who i am and ask for my dude he says in a really broken voice
him : " ( x ) is gone... he isnt here ... im in his car" then the phone goes dead.

i start screaming and jump up so fast that i hit my sholder and head on this cobered thing next to where i sleep. i was sooooooooooooooooo sure my dude was dead. i was thinking of how to get there to see the body.

i call back only to find out the blue tooth in the car was still on and his dad who was sick with a cold was helping him out with something car related. while my dude was inside chilling !!!!

yup ... he wasnt dead yet i was saw from hitting the cabered for days.

[Deleted]

I am reminded every day of our mortality. I've been to the edge and back twice. To sit back and think about whether or not I'd live longer than my hypothetical SO disturbs me. It's something I don't want to think about, even though I see death regularly. It's a completely different beast thinking about your loved one's mortality, compared to your own.

[jturk]

Oct 18, 2013 17:15:46 GMT -5 @queenofhearts said:

I am reminded every day of our mortality. I've been to the edge and back twice. To sit back and think about whether or not I'd live longer than my hypothetical SO disturbs me. It's something I don't want to think about, even though I see death regularly. It's a completely different beast thinking about your loved one's mortality, compared to your own.

I think deep down we are all aware that we and everyone we know are going to die. But I agree it's sort of an unnecessarily painful thing to subject oneself to.  I think it's the fact that we could all be gone in a moment that makes life so precious and makes great relationships so worthwhile. But that doesn't mean I want to spend all that much time thinking about the nitty-gritty of that actually happening.

[jacksongirl]

So, my mother died of a degenerative brain disorder. Everytime i have trouble remembering something, I'm positive I'm starting down the same road as my mom. I don't fear death, but I'm terrified of living like she did, not knowing who her family was, or what was going on or even who she was. I can handle all kinds of shit, but I don't ever want someone I love to look at me like my mom did.

[Corey]

A few months ago I was trying to pull a blanket off my bed and I slipped, and I started to fall. I got stuck slouched over and to the side, with my left leg and armrest pushing into my abdomen. I was still able to breath without too much trouble, but under a slightly different circumstance that could have been it! I was stuck there for 9 hours. Ive thought about death a lot since then. And Ive seen the type 2 SMA survival curves. I dont care so much about me but I dont like the thought of leaving behind a family while they're still young. I am pretty much at peace with being disabled, but this still bothers me sometimes.

[Ath]

Ive definitly been obsessed with death to the extent of it limiting my life and my relationships with other people, not only romantic relationships but the ones with family and friends as well. Its been better the last few years though.
Im absolutely one if those who would blurt out "so hows your heart" before knowing someone.
As a teen I lost so many people grief was the constant state of mind, grief and worry was my "normal" state when I was becoming an adult. I spent better part of a year visiting someone in hospital when I should have been in highschool. Endless number of nights unable to sleep because you have to make sure your partner is breathing or worse, if they have some sort of chest infection, eventhough you know very well you cant do anything anyway. And endless of nights waking up crying watching over even perfectly healthy partners because you are suddenly overcome by this nonlogical fear. Its hard to explain the extent.So many days when you just walked around like a zombie overcome by grief and loss and unaware that life goes on.
I used to worry about my ex partners arguing over who I would spend my time in heaven with once I die. Thats the only thing ive feared about my own death. I've been too aware of my partners or friends mortality to enjoy the time with them the way I should have but its not easy, its one thing to write it and another to live it. And Im great at making people feel uncomfortable by speaking of death
I no longer really think about death and loss on a daily or even weekly basis but Its still to an extent that I have to have that life where Im living on the edge. I dont feel like its my life otherwise its just been that way for as long as I can remember.

[Ath]

Yeah the thought of dude falling when Im not home bothers me, he got a new lift that goes from the floor to the height of his wheelchair but he still has to be alert and have a good day do get up off the floor. I worry about him hitting his head or injure his feet again. The other day I got home and there was blood smears all over the floor! He didnt fall though, he just knicked his toe and didnt notice...
Getting side tracked but the other day the nurse wanted to see him try this lift, and asked him to get down from his chair to the floor, I said that was not a good idea, two seconds later he was schplat on the floor almost knocked out, nurse all in shock...


And yeah one thing about loving someone who is not well is that they will try not to tell you how they are really feeling... wich is really sweet but really annoying and sometimes even dangerous...