[marypure]

Just wondering..thinking..
I have, on several occasions, wondered what it would be like to be paralysed...wondered so much...
Sometimes..I love art so much..sometimes wondered what he feels like...he tells me smart-ass that he is..that it feels like nothing..(well that's not smart-assed, but true) which i am sure is what it feels like..but sometimes i wonder..
because i feel all of my parts...what it FEELS like...is it absence? i don't know..
he doesn't know how he ever felt otherwise because he had his accident when he was two..
what is it like???
i feel like an asshole sometimes..cuz i wheel around in his spare chair all day..like that's supposed to let me know...cuz when i get frustrated, i can just stand up and walk wherever...
i have my legs..what is it like to not just??

[sarah o]

ok, sit curled up on the couch for a few hours until your legs fall asleep.

then witness the different stages they go through as they wake up: first they are totally numb and they won't listen to your mind telling them to move..

then they start to go crazy with tingling sensations..

my experience, having had the 'normal' leg feelings for my first 31 years, is that the first 6 months post injury, was the numbness

for the next 8 years the feeling is a slow version of your legs waking up after being curled up on the couch too long..

that's why we have so many posts regarding pain ~ i bet most people WISH it felt like absense

thanks for asking!

[Joed]

For me, it's like absence...at least in my right leg, there's absolutely nothing. My left has that dull, heavy, concrete feel to it. My pain generates from my spine...I have no pain in my legs.

Oddly, if something 'hurts' my right foot, like the wheels of my w/c, or my 60 lb. boxer standing on it ...my foot will respond by contracting upwards, toes splayed, although I can't feel the pain or the reactive movement at all. So on some mysterious level, it's responsive. I used to think that meant something, but apparently it doesn't.

[Lucydog]

Hi,

This is an interesting question. what it feels like to me is a lot of pain mostly. I wish it really were like 'nothing'. To me it feels like Im impaled on a big white hot spike running up my spine and through my groin. It feels as if Im being flicked with elastic bands all the time, it feels numb and yet it doesnt. It feels like my feet are always in a bucket of iced water. It feels like like Im 'standing' on something vibrating.

So you see to most of us it doesnt feel like nothing, it feels like everything. As was said there is a lot of conversation about pain. And while most of us have very different experiences I think most have experience a lot of pain at some point.
Hope this helps
Lucy

[Coach]

"I was told after I was hurt that the spinal cord is not like telephone wire, which can be spliced, but like mush through which messages travel to and from the brain. When a telephone wire is cut and properly spliced, red to red and white to white, it works as well as ever; when the spinal cord is wounded and heals, it scars, and messages sent up to the brain from below the scarring or down from the brain to below it are blocked at the scar-tissue. One result of the brain's signal to the body being blocked is paralysis, and one outcome of the body's signal to the brain being blocked is a lack of sensation.

"But lack of sensation gives a false impression because what I feel where I am paralyzed isn't an utter absence of feeling. Sitting in my wheelchair, for instance, I seem to feel my weight on my buttocks—but I'd not notice any difference were I sitting on nails. I can feel my legs too, but, with my eyes closed and my body newly positioned in my wheelchair, I am only able to guess whether my legs are or are not bent at the knee. If, experimentally, someone were to squeeze my toe (or penis), I might or might not feel it. If I knew what was being done, I probably would feel it--whether it was in fact being done or not."
_____

Marypure,

The above is from Chapter 1 part i of my unpublished novel LOVE NOTE, which I'm planning to start serializing on the General Spinal Injury Discussion message board of Andy's SCI website http://www.spinalinj...om/homepage.htm on February 13. You can see from it and the other answers you've gotten here that not feeling comes in a lot of forms. I've been hoping other SCI will write about their feeling then but since you've gotten the discussion going, great.

(Hm, this is only the second time I've posted here, and both times I've mentioned that I'm going to serialize LOVE NOTE soon. Worse, I plan to start at least one and maybe two posts about it next week, so all any of this board's contributors and lurkers who don't also use Andy's site will know of me is that I keep pushing my dumb book at them. Sorry. The feeling question made me do it. And this board's so wonderfully active I have never been a regular lurker, let alone contributor, because I'm so busy doing not very much already!)

[Bob Clark]

Hi MaryPure,

After awhile you get so used to being paralyzed that you forget how it felt when you were able-bodied. But I recall this from when I was newly paralyzed. My body felt exactly like I was buried deep in sand up to my neck. It was a fun feeling at the beach but not in a hospital bed! A very heavy feeling on my body that restricted all but the slightest of movements. The next time you're at a sandy beach give it a try. You'll need to get buried deep though. Then start a fire over your body and steam some clams!

I remember, back when I was able-bodied, how I could collapse on the lawn or on the sofa or wherever and stretch out and just feel good all over. No aches or pains... not a worry in the world. Not with a spinal cord injury. There's always something that needs tending to and something that's always tingling, aching, burning or outright hurting. And I have very little pain compared to many SCI people who suffer with chronic and extreme neuro-pain.

It sux!

This post has been edited by Bob Clark: 04 February 2006 - 01:33 AM

[sandyrun]

I do not think that those of us who are ambulatory can remotely imagine what it is like to be paralyzed.

When I first met my b/f back in 1972 at a rehabilitation hospital (you received job training in addition to medical), I never knew that a quad or para had any pain in the area/s that were paralyzed. I just thought that it was paralyzed and there was no pain. After I’ve gotten back in touch with him, I’ve come to realize he’s in constant pain. The pain he experiences is very hard for him to explain to me. He has had several surgeries on his backend and I never would have known that the surgeries and the removal of muscle, etc. back there would cause him pain.

I wish there was some way the whole world could be educated on the handicapped, quads and paras in particular.

[Jilly]

My guy has tried to explain the feeling (or lack of it!) to me many times...He said its like when you sleep on your arm the wrong way, and the blood cuts off and when you wake up its completely numb, you can pick it up and drop it and it flops...
- Thats what its like, and when he touches himself below the line of feeling, it feels just as if he is touching me, or anybody else - theres nothing there except what his hand feels....

Even though I understand what he is telling me I cant truly comprehend it....my brain wont let me.... I try but I simply cant comprehend what that would be like... on a perminant basis....He is T5 complete so there is nothing from just below the nipple line, I just dont get it.....I know it would be simply awful, and try to imagine what that would be like - but I cant get my head around the fact that there is nothing there.....I guess you have to experience it.

Bob I like your description of being buried in the sand, but we would still have sensation and feel the roughness of the sand! My guy has just had his 28th anniversary since his accident (Friday) so he is kind of used to it too.