Tuesday, April 18, 2017

The Art of Peeing in Bed (on Purpose)

As significantly disabled people go, I am the exception. My bladder still works. To take advantage of that, however, requires ingenuity.

During the day, I pee into little containers and empty them into the nearest toilet. Straightforward stuff. But liquids have this unfortunate tendency to flow downhill, and that presents a challenge when I’m lying down in bed.

When it became too difficult for me to sit up in bed and use a container, much like I do in my wheelchair, the difficulties began. For a few years, I had the strength and dexterity to roll over on my side. Once I’m on my side, there’s room for the container, and everything flows downhill. Piece of cake.

As my disease progressed, it became too difficult for me to roll myself over, so I had to wake Kim to assist me. Not straightforward. Not a piece of cake. This interrupted Kim’s sleep, one or two times per night, and it was an imperfect process. She had to roll me over and stick a pillow behind me before I rolled back. Our success rate was less than 100%.

This is where ingenuity came into play. As I searched the internet for a better device for Kim to stick behind me after rolling me over, I happened upon this inflatable pillow:

This product is typically placed between the mattress and box spring, and is used to elevate the head of someone's bed. Here is the description:
The Contour Products Mattress Genie Bed Wedge is an adjustable alternative to foam bed wedges, and an affordable alternative to hospital beds. With just the touch of a button on the hand held remote control, you can raise the head of your bed up to 26" high. When not in use, simply press "flat" and the air bladder will disappear from view, eliminating the issue of storage for a bulky foam bed wedge. 
I began to wonder. What if I turned this pillow lengthwise and laid it underneath one side of my fitted sheet? Because it inflates and deflates rapidly, could it serve the function of rolling me over in bed so I could pee in the middle of the night without Kim’s assistance?

I ordered the device, and we tried it out. It worked—spectacularly. Kim and I both sleep better. I no longer need to dehydrate myself in the evening. I had begun to fear that, although my bladder function is near-normal, I would have to resort to intrusive devices simply because liquids like to flow downhill. Now, I’ve put that thought off for a while longer.

Yes, I realize this example is more evidence of how much simpler men’s lives are than women’s, even in the disabled community.

Although I couldn’t avoid the words pee, bladder, and toilet in this blog post, I didn’t use any unpleasant words like penis, urine, urinal, catheter, or New York  Yankees. You’re welcome.

Tuesday, April 11, 2017

Disabled Cruising 2017 Part 5: All Good Things…


The last time we flew home from the Caribbean, the airline lost both of my power wheelchairs. That memory, and the knowledge that we had eight wheelchair transfers ahead of us, might have induced a certain dread for the trip home, but it didn’t. We had something working in our favor—first class seats on both flights. Did we spent more of Kim’s eBay earnings on such an indulgence? No. We had paid for coach, but for no apparent reason, they assigned us to first class.

When we have short layovers, like we did on this trip home, we always specify that both wheelchairs be checked through to our destination. But when we arrived in Philadelphia, they brought my Permobil wheelchair up to the mouth of the plane, despite my instructions to the contrary. Kim, Andy, Karen, and I explained that we didn’t have time to reassemble the Permobil, transfer me to it, disassemble it, and get it on the next plane. Per the tags on the wheelchair, it was supposed to be checked straight through to Boston.

“No problem. We’ll get your wheelchair to your next flight.”

I was satisfied. Kim was skeptical.

The airport wheelchair they brought me was rather ancient, but I knew I’d only be in it for a short time.

“Let’s remove the armrest,” I said, “so I can slide from this aisle chair into the airport wheelchair.”

Six people tried to get the armrest off, then one of the airport employees stated the obvious. “The armrests on this wheelchair are not removable.”

“Then let’s remove the leg rests,” I said, “and I’ll slide in the chair from the front.”

Six people tried to get the leg rests off, then one of the airport employees stated the obvious. “The leg rests on this wheelchair are not removable.”

Apparently, I was the first wheelchair user this airport had ever encountered. The only option became lifting me up and into the wheelchair, instead of sliding. Six people each grabbed a piece of me and made it happen. I survived.

When we reached the gate for my Boston flight, they had already begun boarding the plane. In most cases, this would have caused me some consternation, because passengers already seated in the plane would have been able to gawk at me as I boarded. They would see how the sausage is made. But I didn’t mind in this instance because I was in seat 1A. Surrounded by my team of lifters, pullers, and tuggers, nobody would get a good look at the sausage-making other than the guy in 1C.

Soon after we boarded our final leg of the trip, the flight attendants closed the door, and we were ready to go. But we didn’t go. Kim’s instincts had been right. The pilot came on the speaker system and said, “We are all ready to go but are waiting for an electric wheelchair to be loaded into the luggage compartment. Once that is done, we’ll be underway.”

At least 100 people, the front half of the plane who could see me when I boarded, knew damn well whose wheelchair was holding things up.

I expect their reactions broke down this way:

50 of those 100 passengers thought, “How awesome that somebody so disabled is still able to travel. I guess I can wait a few minutes.”

12 passengers thought, “His poor wife…”

10 thought, “Look at his wife, that lucky bastard.”

7 thought, “I can’t believe the pilot just singled him out that way. Very inconsiderate.”

Sadly, 6 passengers thought, “People like him shouldn’t be allowed to fly. He holds up everybody.”

5 thought, “I wonder why he can’t walk.”

4 thought, “How can he afford to be in first class? Must’ve got a big settlement.”

3 thought, “What if he has to pee on the flight? Or worse?”

2 passengers thought, “I wish I was paralyzed so I could quit this damn job.”

And 1 passenger probably thought to herself, “I don’t know if he has MS or something else, but I sure hope my MS never gets that bad.”

When we arrived in Boston, Andy went to get the van and Karen, Kim, and I headed to baggage claim. Everything was accounted for except the iBot. I went to the baggage office to inquire. The gentleman in front of me was ripping the person behind the desk a new one.

He said, “I am appalled that you would treat a first-class passenger this way.”

You poor baby. You poor fucking baby.

The other attendant quickly found my iBot, and we were on our way.

So ended another wonderful vacation. I’m grateful that I have the resources to travel this way. And I’m thankful for the help of my brothers, my sisters-in-law, and most of all, my amazing wife. We had so much fun that we’re going on another cruise this summer.

Maybe I’ll blog about it.

For part 4, click here.

Tuesday, April 4, 2017

Disabled Cruising 2017 Part 4: On the Ship

For this vacation, we decided to use Kim's eBay earnings to see how the other side lives. We booked a wheelchair accessible suite, which is of course larger than a normal suite, which is larger than a normal cabin.  Certain perks came with the suite package too, such as a butler (who we shared with ten other suites), unlimited internet, premium drink package, private cocktail bar and dining room, champagne upon arrival, preferred seating at the theater, and a bunch of other, mostly minor, stuff.

I’m reminded of the movie Titanic, where the first class and steerage passengers were kept separated. Like Rose’s fiancĂ© in the movie, I knew I would have to remain diligent to keep Kim from sneaking out of our cabin to go below decks and party with the real people. I think I succeeded, but there was that one night when I didn’t hear any snoring from the other side of the bed…

The Ship 


I find large, modern cruise ships to be more accessible than even the nicest hotels. This ship, Celebrity’s Silhouette, did not disappoint. The cabin was spacious and wheelchair friendly, especially the bathroom. When I pushed my key card into the slot, the door to our cabin not only unlocked, but it opened for me. And the public spaces shined. Almost every door I encountered opened and closed for me automatically. The entrance to every public bathroom was equipped with a pushbutton, as was the entrance to the accessible stall within. Few ramps were required because few elevation changes existed. And elevators? There were banks and banks of them.

Outstanding food options are included in every cruise package, but they try to get you with high-end restaurants that require you to pay a premium. With our suite package, we had access to a couple of these without an extra fee. I remember on our first cruise seven years ago, we ate in the main dining room every night, and we considered the quality of the food and the service to be five-star. By dining at the same table every night, we were waited on by the same service folks and sat with the same dining companions. We learned a little bit about the staff and our companions, and they learned a little about us. By day two, our favorite drinks were awaiting us when we arrived. On this cruise, however, we ate at a different restaurant almost every night. Again, the food and service were outstanding, but we did miss out on that classic cruise experience of the main dining room.

Kim and I like to gamble. I play the blackjack tables, and she plays video poker. We frequented the ship’s casino, as did my brother Andy. I came in second place in the blackjack tournament, but that pot wasn’t enough to offset my losses for the week. Kim didn’t make out so well either, but we met a lot of people and had fun.

Each evening we rendezvoused with the rest of our gang on the appropriate deck to have a drink and watch the sunset. Here are a few photos.






The iBot


Although almost nine years old now, the iBot still impresses. My other chair, a Permobil, does more tricks than the iBot, and it is better suited for everyday use, but nothing turns heads like the iBot’s balance mode or stairclimbing mode. In my Permobil wheelchair, people treating me politely if they noticed me in all. In my iBot, I was a rock star. I encountered a problem, however, which was a first for me with the iBot. In balance mode, the chair is quite good about adjusting to various inclines, but it has no ability to adjust for elevation differences in the opposite axis, sidehill situations. Here’s what I mean.

One day Andy rented a cabana on the top deck of the cruise ship. One of the unique features of the ship, or this class of ship within Celebrity, is the real grass lawn areas on the top deck. The first time I approached our cabana, I didn’t realize that a curb crept up on the sidewalk. When I hit the angled curb in balance mode with just one of my tires, see picture below, I thought I was screwed. But the iBot quickly diagnosed the fact that I was about to tip over, and it dropped me from balance mode into four-wheel-drive mode so quickly that I didn't tip over at all. As everyone does when they stumble, the first thing I did was look around to see if anyone had seen me, and they hadn’t. Still, I confessed my story as we sat in the cabana and sipped on tropical drinks.

One evening, as we were hanging out at a nightclub, a gentleman approached me when I was in balance mode.

“How long have you been in your iBOT?”

“Almost nine years. I got one of the last ones made.”

“We’re making an iBOT 2.0, you know.”

“You work for DEKA?”

“Yes I do.”

“Hey, I’m the guy on the landing page of your website…”

We had a nice conversation on all things iBot, and he is excited about the next generation product, although he couldn’t provide me with many details.

I’m going to miss my iBot when it finally reaches the end of its life.

One more post about the cruise!

For part three, click here.
For part five, click here.