Comments on Wheelchair Kamikaze: The Un-Comfort Zone

As a single girl in a chair with no ability to sta...

2009-07-11T17:10:16.213-04:00

As a single girl in a chair with no ability to stand at all, I remain held hostage at home by my bladder. Sadly urinals don't help women much!
So much preparation is involved in leaving the house that all spontanaiety is gone.

An empty Yuban coffee can w/ kitty litter works in...

2009-07-09T03:05:56.924-04:00

An empty Yuban coffee can w/ kitty litter works in a pinch. (don't ask how I know that).
Try turning on/off lights with your elbow.
I use two canes for greater balance. Shift them both to one hand at times. Great for opening bathroom stalls as you sit there watching the people watching you...sigh...we adapt...we survive...we mush onward.
and Marc, it does take bravery.
jstlookn

I went to a family reunion over the holiday weeken...

2009-07-08T23:58:19.279-04:00

I went to a family reunion over the holiday weekend. The house had steps leading up to the front door. I can walk, not great though. It was an adventure. I lost my balance enough to scare everyone there. Bathroom was on a different level. Aarcyn

Hey Marc, I been using the pee bags that jell up ...

2009-07-08T15:01:19.401-04:00

Hey Marc,

I been using the pee bags that jell up and control odor for a couple of years. They are great I use my truck to support myself and pee away. It helps not having to worry about public bathrooms which I dispise. I can usually pee twice in bag holds a lot but don't try 3 times could get messy. These bags are my best friend love them.

Tracy

Katja: I find it hilarious when people tell me how...

2009-07-07T22:29:28.341-04:00

Katja: I find it hilarious when people tell me how brave I must be to be able to do what I do. Brave, my ass. You wake up everyday and simply get on with it, as best you can. Brave is running into a burning building to save somebody. Figuring out a way to get from the bedroom to the bathroom without peeing yourself is necessity, not bravery...

Michelle: thank you for your well written and insightful response. You've summed up the situation precisely. Yes, we do need to get out of the house and rejoin the world as often as we can, but the circumstances and timing need to be of our own choosing. The world outside is an obstacle course, and sometimes you're just not up to overcoming obstacles...

anonymous: thanks to your suggestion, my wife found some portable urinals on Amazon that use some kind of gel that solidifies after use, keeping things from getting messy. I'll be using them on my next trip to Bethesda...

kicker: seems like we are all in the same boat, huh? It's a real problem, because I do want to remain social, and I do want to maintain friendships. But I'd much rather the party come to me than me go to the party...

best: yes, it does seem that the bathroom does become an object of obsession with us gimps. I need a rest after using the restroom...

You hit a raw nerve with me. I know exactly how yo...

2009-07-07T22:12:41.775-04:00

You hit a raw nerve with me. I know exactly how you feel because I feel the same way.

It's unbelieveable that life outside of my house revolves around when and where I can go to the bathroom, and if I'll have the strength to get up when I'm through. It's one huge slap in the face every time I can't accomplish a small task and I'm driven to fight myself to succeed.

Bestadmom (the other Michelle)

Geez, I type lousy! Think I checked but still lif...

2009-07-07T10:21:04.941-04:00

Geez, I type lousy! Think I checked but still lift errors - decide, eat.

Weel-meaning people decid I should ear out, go to ...

2009-07-07T09:20:41.840-04:00

Weel-meaning people decid I should ear out, go to a party and drink, etc., then it's avoidance of dealing and talking to the crip (and I once shone at parties)or RREEAALLY nice people talking to the crip,and me wondering how I can use the bathroom. I come home all bothered, vowing I'll never do that again. But I do. Sometimes it's good, often not.

Kicker

As guys, we do have the luxury of using a hand-hel...

2009-07-07T08:50:07.765-04:00

As guys, we do have the luxury of using a hand-held urinal on road trips or even short outings. A urinal and purell and you are set.

I use the urinal at home too. Makes life so much safer.

I agree with you Marc. I'm not nearly as disab...

2009-07-06T22:14:57.262-04:00

I agree with you Marc. I'm not nearly as disabled at home as I am practically anywhere else. A few years ago, well, back in 1983 or so, I could manage wheeling myself on a mile-long stroll around the neighborhood by myself, curbs and all. Now? After not using a w/c 100% of the time since 1985, I no longer have the upper body strength to push myself that far, and no more curbs!

As for walking around my house with one crutch? I know all the sturdy places to grab onto that make it possible. Away from home, I'm also in super-vigilant mode. It's exhausting.

Wow! Great blog. That one hit a raw nerve. It'...

2009-07-06T17:06:30.924-04:00

Wow! Great blog. That one hit a raw nerve. It's an aspect of disability that is invisible and nearly impossible for able-bodied people to understand. That daily complicated "dance" with the furniture, the appliances, the doorknobs, the towel racks, and the funky functioning body that you have to go through to do the simplest of things. That "familiarity with the terrain" that has to be there in order for your mind to be free from a thousand calculations so you can relax a little, feel like yourself, and feel like a somewhat normal human being. As soon as I walk out of that door, everything changes. I become a fearful, helpless, cripple. When my wonderful, well-meaning able-bodied friends "decide" that I've been cooped up in the house too long by myself, they insist on taking me to a concert, or on a road trip, or something. Not to worry! We'll take care of things! They have no idea about the minutiae of my existence. (Nor do I really want them too. I want to spend time with them as "friends".) They're thinking about getting the manual chair in and out of the car, of pushing me around, or helping me up a step. I'm thinking "You're going to come with me to the bathroom? You're going to help me off the toilet seat with my bare ass hanging out? You're going to hand me toilet paper when I discover it's out of my reach? You have any idea how that makes me feel?" And on and on. Often, I have to come up with some lame excuse and they act hurt - like I don't trust them to take care of me. It's not that. I have to weigh the pleasure that I may get from the experience against: the tension that comes from being in survival mode for an extended period of time, the fear of an "accident" that could seriously affect my life if I make a wrong move or get distracted for a second or two, and being smacked in the face continually with just how disabled I actually am. Of course sometimes you DO have to get out. And sometimes things work out okay and I have a good time on balance. But more often than not, I return home feeling physically and mentally exhausted, and extremely depressed. My home is familiar and is adapted to my needs. The rest of the world is not. Yes, it makes my world kind of small, but I can be ME in it. Out there, I'm someone else.

Michelle

It's incredible what a person can get used...

2009-07-06T16:42:55.925-04:00
It's incredible what a person can get used to, isn't it?

It really is. I remember when I thought changing a dirty diaper was the world's biggest challenge...