Friday, April 9, 2010

My MS Story Chapter 34- Tell Me About the Bathroom

Life is like a movie-since there aren't any commercial breaks, you have to get up and go to the bathroom in the middle of it.
Garry Trudeau

A select few of us have legs that don’t work but a bladder that still does. I assume that we constitute a minority of wheelchair users in that way (although not so uncommon in the MS world). Because I have this versatile wheelchair that climbs curbs and stairs, the limiting factor of where I can go and how long I can stay is often bathroom access. My friends appreciate the incredible mobility that I have with my iBOT wheelchair, and often encourage me with phrases like, “Oh, you can get in there with your wheelchair, no problem.” But they don’t think about the bathroom. I, on the other hand, spend considerable time thinking about, wondering about, and strategizing about bathrooms.

New, public buildings are not the problem- airports, hospitals, shopping malls. The ones that make life interesting for me are the old buildings and the private homes.

Our favorite pub in downtown Portland is called Ri Ra. Up until a year or so ago, I could still manage to use bathrooms that required me to get up out of my scooter or wheelchair, struggle through a bathroom door, and use the toilet. When I could no longer do that, Ri Ra just wasn’t working for me anymore. Too bad, because it’s a fun spot to meet friends after work and a welcoming space to bring out-of-town guests for a cold brew.

7c0022d3ada2402cb1385d47769511b4-800 So, as I’m driven to do by necessity sometimes, I became creative. There is a nice hotel directly across the (busy) street from Ri Ra. Now, anytime I’m enjoying my favorite pub and need to use the toilet, I put on my coat and gloves (if it is winter) and cross the street to the hotel. I carry myself as if I’m a guest while I zip by the check-in desk. Sometimes I even help myself to one of their complimentary chocolate chip cookies. They greet me with a “good evening sir,” or similar. I go around the corner to the lobby bathroom, use it, and then leave again. I can't tell if the folks behind the desk are na├»ve or compassionate.  Who's fooling whom anyway? 

John and Ann are good friends. Kim and I often visit their home to watch a Red Sox or Patriots game together. They have three steps up from their garage to their entryway, but this is no problem for the iBOT. Their first-story bathroom is accessed from a narrow hallway. I just can't quite make the corner into that bathroom. Until a few months ago I could manage to get out of my chair and slither on over to the toilet, but no more. So once again, I became creative.

The tightest turning radius in my iBOT wheelchair is actually in the balance mode. So at John and Ann’s house I now go into balance mode in the hallway, make my way into the bathroom, go back down into standard mode, transfer to the toilet, transfer back to the wheelchair, go back up into balance mode, exit the bathroom, and then go back down into standard mode. Piece of cake. It sounds like a lot of hoops to jump through in order to use the bathroom, but as a disabled person you either learn the patience required for these types of work-around plans, or you sit home all day.

Here's another problem I encounter sometimes -- low toilets. I visited some friends in Boston recently. Their condo was quite roomy. I could even get into the bathroom without going up into balance mode. The problem was, once I got situated on their low-rise toilet, it became very difficult to get back up. The vanity was to my right, so I had something to use as leverage for that half of my body.  There was nothing, however, to support the left side of my body.  I found myself stuck on their toilet for about ten minutes. I was on the verge having to call for help, something that personal vanity discourages. But, at the last minute I executed a successful, all-or-nothing lunge for my chair.

Handicapped%20bathroom When I had my CCSVI procedure in Brooklyn in March, we met friends at a Manhattan restaurant for dinner. Kim and I arrived at the restaurant before the other six guests. After a rush hour drive from Brooklyn to Manhattan, I needed to empty my bladder. Unfortunately, the restaurant bathroom was inaccessible. I asked the maitre d’ if there was a handicapped bathroom anywhere nearby, and there wasn’t. Kim and I surveyed the situation in the restaurant bathroom a second time, and devised a strategy. Long story short- I held myself up by grabbing whatever I could (doorknob, countertop, Kim's shoulder) and Kim moved my feet for me one at a time, the 10 steps or so from the door to the toilet and back again. I nearly ended up sprawled on the floor a couple of times, but Kim propped me up (and I only outweigh her by 80 lbs). I refrained from drinking anything with dinner, as I didn’t want to wrestle with that bathroom again.

Last summer I was speaking with a friend of mine about my bathroom accessibility issues. She asked the question, "Why don't you just use a catheter and a bag?" One day I may have to do that, I explained to her, but as long as my bladder is still working I feel obligated to use it. So, for the foreseeable future, I'll continue to make the following request whenever we consider going someplace for the first time:

"Tell me about the bathroom."


  1. No truer words have been spoken. It is a perplexing dilemma that hounds me everytime I go anywhere. Nobody understands how troubling it is to think of bathroom accessibility everytime you go somewhere. And what about outdoor festivals or fairs that offer only those port-a- potties. How in the world are we supposed to use those?

  2. Your friend's comment "why don't you just use a catheter and bag" tossed off so easily just like my friend's comment "well, what's so bad if you do have to wind up in the wheelchair all day?" make me realize 99.9% of the population just does not get it. I suffer from PPMS and my husband from Crohn's Disease, so bathroom issues when travelling and out and about are paramount to us. Low toilets (even in the handicapped stalls), locks that don't latch when you do get in the stall, hand towels or blowers positioned what seems to be miles from the sinks are huge obstacles to overcome while trying to maintain one's balance and not fall face first on the grimy bathroom floor. Your description of trying to rise from a low toilet is exactly what I go through as well. Stuck on a toilet, humiliated and nearly in tears. What has helped me recently, once I do manage to figure out a way to leverage myself up, is to visualize my self standing in one fluid motion! It has helped me somewhat, maybe it will help you too.

  3. Oh, yeah, so familiar!

    But everybody's got blinders of some sort - I just engaged in a discussion on an SCI (spinal cord injury) board that included the following statements:

    "It seems to me that a handicapped/wheelchair accessible toilet doesn't even need a toilet, just somewhere to empty into and flush!"

    "Handicapped toilet stalls are made larger to accommodate a wheel chair, but how many people in wheel chairs transfer to the toilet in a public rest room?"

    "What other disability requires an extra-large stall to toilet?" (i.e., there couldn't possibly be anyone who doesn't use a chair who needed to use the extra-large stall)

    "My opinion is, if you can sit in a normal chair and get up to a standing position unaided, then you should keep out of the HC stalls period."

  4. The problem only gets more complex when you need help to transfer, and your helper is the opposite gender. As much as we enjoy patronizing local establishments, when we're traveling we look for chains that we know have what we refer to as "one-holer" restrooms large enough to accommodate both of us and a wheelchair. We always scout the bathroom first!

  5. Rae, I've seen some handicapped accessible port-a-potties, but they are pretty rare.

    bitemyelbow, I love your name. You are right. Healthy people just don't get it. But I was healthy at one time, and I'm sure I didn't get it either.

    Katja, excellent quotes! It speaks to the ignorance out there about handicapped life- and unfortunatley much of it is not pretty. Since it's not pretty, most of us don't talk about it. We don't talk about it, so the healthy people never get smarter. Their ignorance makes it harder for us. Vicious circle.

    Zoomdoggies, I do love those one-holer bathrooms too. "Bathroom scouting," mind if I steal that term?

  6. DH and I went 3 states away to visit. The rest rooms were gender specific and I need help. so we "snuck" into the Men's room. Some young guys stood outside the main door for us. I giggled so hard good thing I was already sitting on the toilet.

  7. Going to the bathroom is the bane of my existence. It affects every decision I make when leaving the house.

    My office doesn't have an accessible stall in the lady's room, and I work on the 11th floor in a 30+ story building. I, like NYC apartment-dwelling dogs, have to go down the elevator to use the one handicap bathroom in the building. This is no easy feat.

    When I found about the bathroom, there were no grab bars. It's just spacious. It took 3 botched grab bar installations by the building's work crew before I got the opportunity to show them how to read the ADA schematic.

    I've got my own large stall and sink, but I haven't figured out how to reach the faucet.

    So Mitch, the next time we go to dinner in NYC on a work night, be sure to not shake my hand!!

  8. Oh so true! I even have problems at my mother's nursing home!!

    Mitch, stop by my blog -- you've been tagged!!


  9. I use TravelJohn. They work for both sexes. I don't think I'd be working without them.


  10. Kicker, women are not allowed in men's bathrooms because we don't want them to see the tapped keag, big screen TV, and strippers that we actually keep in there. Don't tell any women what you saw, ok?

    Michelle, why don't you just use a catheter and bag, jeese? Kidding.

    Muffie, that's what it's come to for us- more disabled than the people in a nursing home?

    Anonymous, I just bought my first package of traveljohns a few days ago, and have not had the opportunity to try one yet.

  11. I recently went with a good friend to see the venue for her daughter's wedding in an extremely fancy hotel. I happened to notice a directional sign near the elevators pointing to the restrooms with a handicapped symbol. Great! However the arrow was pointing towards a set of 5 stairs!

    My friend was quite upset as three of her guests have MS & use wheelchairs. The "tour guide" said they could put up a portable ramp. However, any way I looked at it, a ramp would be totally obtrusive & in everybody's way (as in across the fronts of the elevators' doors.) What a wonderful way to make us wheelchair users feel "special." I didn't go up the stairs that day to check out the restrooms. They might be interesting, too.

  12. What IS that bar at the back FOR? I posed the ? on my blog a few days ago and no one knew. Do you?