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by RoboDad on Tuesday, May 15, 2012

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Deep introspection. Very interesting read. As someone who also finds comfort in familiarity, (naturally) I can relate.

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I truly enjoyed reading your post. As a mother of a 10 year old little boy with a T-3 spinal cord injury it's nice to re...

by Johanna on Thursday, January 12, 2012

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Heart & Nerve

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P&P

Posted by Candace
Sunday, Febuary 13, 2011

Comments (11)

I don't know about you but walking is not at the top of my list of actions I'd like to have back from BTCASCI (before the crash and spinal cord injury). I bring up this subject due to a conversation I had with a colleague about a SCI research symposium he attended. This conference was full of scientist expounding on the strides made in the search to get us SCI folks walking. When he spoke of the progress, I took umbrage and got irritated with the idea that they, “the researchers” were making the assumption that walking was at the top of my, to do list, when the cure comes on down the pike.

I don’t remember a survey asking me what I wanted from the cure research. I believe that huge, exhaustive, and vast assumptions have been made that my number one wanting must be walking. It’s what the majority of humans do so I must want to walk, right? Or that my life is missing something because I don’t walk? Few can imagine how someone would not care if they walked? Well, I don’t care. And honestly, if the world would get on board with universal design much a do about walking would be a mute point and what really matters, prefect indoor plumbing, would be the focal point. Opps, I’m of f my point a bit.

I am so greedy; I have two wants from this cure, miles before I walk. My top two are, drum roll please, pee & poop (P&P), to feel it, fully, do it on command and do it without accoutrements. I want to take a seat on the throne, with complete control to go or slow or stop without sticking something somewhere. Yep, that’s right; I’m talking about P&P. Oh I heard that Groan, too gross for you. Well life is gross, so get over it. I know, I know too much information, let’s not talk about these bodily functions we all have. People living with SCI can’t talk enough about P&P and those living without don’t want to hear about, except maybe my grandparents. Maybe that’s it, walking is glamour while P&P is so mundane.

It’s not just me, that dreams of full throttle P&P. Most folks I know living with a SCI say their quality of life would vastly improve if they could tell, without a doubt that it’s time for it to come out. Our lives are scheduled around this act that so many give so little mindfulness to. The other day, I completed another spectacular ski when two of my SCI-ed friends I sit ski with were finishing also. Literally within three minutes the subject turned to a loose deuce and all its ramifications. We did NOT once in the twenty minutes of conversing speak about walking and how much we want it. Pretty much if two or more individuals with a SCI are in the room, the P&P subject is coming up, discussed in detail.

Involuntary. Now there’s a cute word that’s synonymous, within the club, with SCI that has me cringing when I hear it. It means I pissed or pooped myself, there you go I said it again. It’s a usual occurrence in the SCI community. My sister granted a wish I had to swing on a swing just after my release from the internment camp of rehabilitation. As we began to swing higher and higher we laughed harder and harder, know what happened next? Yep, I involuntarily peed all over her. We laughed cuz what else is there do, but really, yuck!

Even my dear family has scant notion of what it takes to eliminate waste products from my body. Of course the've seen the catheters and gloves I drag around. But that’s where the story ends. Lately I have been fantasizing about being a vampire from the Twilight series of books, for several reasons, but among their attribute I covet, yes I said attributes, is they don’t P&P. Heck, I’m well on my way to vampire-ness already; my body is cold all the time.

And the stuff! Oh, please get me started on the land fills I must be filling with all my evacuation instruments. Traveling I fill a second suitcase full of catheters, gloves, pads, wipes, gels, etc, gosh TSA must think I’m a rolling mash unit. Most of my SCI friends have heard my plea for biodegradable materials and packaging for my P&P toys. This concept could make someone millions, are you listening research scientists? If the P&P accessory industry just went green, without the cure, oh, the good I could do for my home, planet earth. Walking does nothing to better my home, this planet, but giving me back my P&P now there’s a step in the right direction.

If you ask me, science guys and gals, I want to feel the urge to purge poop and pee. I want to control the urge and do it without touching it. Once that’s taken care of than I’ll talk the walk, if your ask’n. I’m just say’n.

Blessings to all, In Joy, Candace

Support Candace at Turning Point Tahoe

Find out more about Bladder Management on the Paralysis Resource Center.

Copyright 2011 Candace Cable

RoboDad: I'll take two of whatever you had before writing this masterpiece. Happy Valentine's Day from a fan! You're spot-on accurate, and I laughed from the first sentence through the last. Good job!
John: It is about time someone started talking about all the things that are on my mind long before I walk. Walking is not even in my top ten things I want back that were lost in the accident. Science has lost touch with the humanity of the people involveda and have focused on the technicality of the injury. Just ask me I will tell you what I want. Great posting!
Christopher: I totally understand, and can relate. Having regained a lot of bowel sensation, and have always had ok bladder sensation, like know when I HAVE to go rather than when I SHOULD! I too have had my share of accidents/things to clean up, suffering from constant uti's mostly... Good times...But I have read many things posted here though, talking about the many benefits of being upright, like improved bowel/bladder sensation, that although walking may be way down on list, or not even on yours, the quest to get there involves being upright, and trying may improve these functions for some, albeit not all. I just don't think the quest to walk again should be discouraged, especially for those early in their recovery. I think we all had enough of that.
Denese: This is so so so very accurate! Thank you for posting this! This is definitely my top priority from a "cure". Don't care about walking, I'm with you on universal design!
CHILL: HERE HERE...I 2nd that...but as far as your bladder control, have you tried enablex or toviaz?
Bob: Thanks for writing this. The able bodied public needs to know what SCI survivors live with. Well said!
JLo: Candace, this I think may have been one of your best pieces I've read thus far! Though your "P&P" regimen may not be so simple, this piece you wrote sure is. It's honest, to the point, and gives us everyone - SCI and able-bodied alike - a good chuckle!
Stephanie: The good news is that the cure for walking is likely to be the same as the cure for P&P so we won't have to choose one or the other. There are some researchers that know that P&P is important to us but I think they focus so much on walking instead because it is much more dramatic to get someone onto their feet than to say they can pee and poop like everyone else. And to be honest, I want everything back, not just half the package.
Chrissy: I TOTALLY hear your frustrations! P&P as you put it is something the average person doesn't have to think about, or want to hear about it. Unfortunately, for those of us living with paralysis, it practically rules our lives. I've been injured (C4/C5 complete) for 5 1/2 years now, and I still struggle with this issue the most. I was a very private (some might say neurotic) person, when it came to going to the bathroom before my accident. I could rarely ever bring myself to use a public restroom, to do number one, and number two was out of the question. Being a woman, brought with it it's own obstacles and I always had difficulty with bathroom related issues. I can remember packing my own toilet paper, travel size Lyesol spray, Purel & baby wipes, for long car rides, because I was horrified by the thought of what conditions I might might find at rest stops. Being a woman, I've always felt that having to go number two is the most unfeminine thing possible, and considered it a highly private, secretive matter. Yes, we all have to do it, but we shouldn't advertise it. Obviously, paralysis robbed me of my control and privacy. Having to have a catheter and a bowel regime, have been the two hardest aspects of paralysis. I still find it extremely traumatic, any time I have an "accident" and continue to feel violated by having to have help going to the bathroom. It's a freedom, most people take for granted, that seemingly runs my life. As embarrassing as it can be to talk about it, I think it's important to share the realities of paralysis. Those of us living with paralysis don't have the luxury of not thinking about it, or discussing it, just because it's gross, or unpleasant to deal with. We have no choice, but to have people in our face, helping us, with the most private, and basic of needs. The average person should be reminded of how fortunate they are, because paralysis can happen to anyone, and it's important for people to understand & appreciate how important and meaningful it is to have the ability to care for one's self. Once that freedom is taken away, it's not easy. I have yet to acclimate to the fact that I need help. I understand and accept help, on a conscious, logical level, because I know I have no other choice. However, even after five years, every day I have bowel program, is as invasive and embarrassing as the first. Every P/P "accident" is traumatic. I still cringe and feel ashamed of having to occasionally wear Depends, in my thirties. I'm still repulsed by my catheter, and embarrassed by it. I had twenty-four "normal" years on my feet, as an independent, self sufficient, private person. I don't know how to not be bothered by needing help. I accept it, out of necessity, but it is extremely stressful, feeling like almost nothing is within my control. Especially, given the fact that the most basic needs, have now become a source of constant worry and anxiety. It's insanely frustrating and disheartening, to take dozens of pills (mostly all bowel/bladder related), watch my diet, endure having bowel program every other day, and still not be ale to have 100% piece of mind that I won't have an accident.
At this point, if I could care for myself, and have back my privacy and dignity, I'd be content. I'd gladly settle for just being able to wash, dress, feed myself and be able to go to the bathroom by myself. I'm so worn down by the last 5 1/2 years, that I can barely imagine a cure being a reality for me. I wish I could cope better with the whole P&P issue. On the other hand, I feel like I have every right to feel the way I do about it. Paralysis has stolen so much from me, and I think I'm justified in feeling frustrated, violated and vulnerable. I think the average person needs to hear the realities of living with paralysis, so they can understand why it's so critical for us to find a cure. Thanks for sharing a dose of reality.
Beth: So right. P&P is the only thing I HATE avout SCI. I am 44 years out and old, he cure I will never see. GREAT Article.
nanaboombala: I wasn't ask'n.......but I'm really glad you were say'n ! That was hysterical ! Thank you so much !
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