Sitting Up for What You Believe in — a Self-Advocacy Win

  Ask and ye shall receive, especially if you ask again and again, or maybe not. Sometimes you have to keep on asking.

This might be a little long but it's a big win and maybe somebody else is challenged or frustrated getting medical professionals to hear them too. I am getting a new wheelchair. After five years you are eligible for one under Medicare. Nancy, my chair, is 5 years old and I'm generally happy with her. I named her for the clinic office manager who fought so hard to push the procurement process through the bureaucratic whirlpool that it was stuck in: I was literally calling the equipment provider, who told me, "You've got to call your insurance company," and then the insurance company would tell me, "You've got to call your provider," and back and forth and on and on. Until Nancy, sweet but dogged, stepped in and started knocking heads together. Actually I never knew exactly what she did, but a few weeks later I had a sparkly new wheelchair, with blue highlights almost the color of the eyes of, you guessed it, Nancy. I wonder how Nancy's doing.

I got the idea of an upgrade from Dr. K when I asked about improving my posture. I don't sit up as straight as I'd like, but it's workable and after a few years I am comfortable in it. But still, posture is a big deal when you're sitting as much as I do. She gave me the once over, and stopped at my chair. She looked like she ate some bad seafood. "How old is that chair?" she said, but her voice said, "You dragged that skanky-ass thing in my clinic?"

I said it's only 4 years old. Don't mess with my Nancy, right?

"You bring this up with me again next year. You need a new chair." And sure enough, at my next appointment she urged me to get a new chair, that new refinements are built into the new chairs all the time. Besides I needed better posture, and the experts at TIRR Memorial Hermann would set me up/sit me up in the best way possible -- and there, I knew she was right. "If you're eligible," she said, talking about insurance, "then you should get it."

When I got home I straight-away made an appointment at the ceiling clinic so we could order my chair. Alas, poor Nancy, you're going out to pasture.

The seating clinic at TIRR Kirby Glen in Houston is top-notch, in my book. Last year, they literally changed my life. I drive my chair with a head array, with drive sensors in the pads of the headrest. I press my head to the right and I go right. I press my head to the left and I go left. It took time to get used to, but it's a setup that keeps me going. Problem was, everything was setup for me and my condition four years ago, which apparently is not the same as me and my condition now. As I would tire throughout the day I began leaning to my left side, so that I could not reach the right side of the headrest as easily. Imagine paddling a kayak with one oar shorter than the other. You might just go around and around in a circle. On a weekend night, I would really be in my glory: After an evening of drinkies – it can get cold as the campfire logs burn down -- you might see me at 2 AM, circling around and around down the road, loping my way gradually home. My buddy patiently walked beside me, probably getting dizzy watching me. Great guy that he is, he would escort me all the way home before I ran into a ditch. There are stories round these parts. … 

Head array: Each button and pad controls something different.

So last year my seating tech at Kirby Glen and my private DME provider who often works with him gave me a new seatback that wrapped around my sides for more support. The result was that I sat up much straighter and more securely. Sitting straighter meant I had better access to my drive controls, i.e., the pads of my headrest, so that I could drive better and more safely. I could go more than 20 feet at a time without having to reposition myself or take a breather. I could go over a bump and not have to stop for 10 seconds to get myself together again. Instead of moving forward in Spirograph loops, I was going wherever the heck I wanted to, even older bumpy hiking trails in state and national parks. In fact, I've grown so used to trails on our camping trips that when I get home I have to keep going out for 2-3 miles every day or I get all stir crazy. That's a gigantic difference! In short, life is so much better now and it's because of two guys. So yeah, I was happy I was going to see them at Kirby Glen again to get fitted for a new chair.

Before the appointment I printed out a list of my questions and issues for everyone in the room, because that's what I do. It's completely anal, but I learned to do it because I always forget to bring things up in the office. We get more done this way. My tech snatched up his copy and said, "We like lists." On it I included features I wanted included on my new chair -- like the things that suck the worst about my current chair (sorry, Nancy) and what I want different in the new one. We took my measurements and I chose which options I wanted, kind of like when you're buying a new car, which is fun. There are a lot of colors available now too. I was admiring the red with metallic gold highlights I'd chosen, kind of Iron Man-y. "This is pretty wild," I said.

The tech laughed. "Not really."

"Old-guy wild, OK? I'm an old guy now."

He laughed. But here's why he is very cool: As I'm telling them the things about Nancy that I want different on my new chair, they started fixing up Nancy too -- something I really was not expecting. "What else you want?" they said. I told them again how they literally changed my life, but mentioned that my posture was bad.

"How so?" was their response, which was weird because whenever I catch myself in the mirror, I cringe. Shoulders hunched, arms lying like dead fish in my lap, and my head and neck craned forward. These guys can't see anything wrong here? And they are seating experts? The same ones who helped me so much last year? At that point I was remembering that I brought up the same issue with them the year before. Hmm.

Slumping 24/7.

They watched me take a spin around the small office area, and I'm paraphrasing from here on, but they said, "It looks like you are set."

"I don't want to be set," I said. "I want it changed."

"But it could mess with your driving, and you're driving well. Are you comfortable?"

"I am comfortable, but I could be better. I want to be better. I want to sit up, I want to breathe more deeply. I want better digestion."

"Are you sure?" they said. "A lot of people don't do well with change."

"I've got no problem with change. I want to sit better."

"But everyone has their own way of doing things. It may not be physically perfect-looking, but it's what works for them. Are you the type of people who can deal with change?"

"Yes," my wife and I both chimed in. "I want to sit better. Can we adjust the headrest a little and see how I do with it right here?"

Finally they got up and reached for the tools. They started on my headrest.

It was that kind of back and forth and back and forth until they really heard what we wanted AND my wife and I both (it was definitely a team effort) convinced them that we were for real. Obviously they'd been burned when making adjustments to people's very personalized setups. Experiences like that would tend to make a seating tech gunshy, right? But finally they took up their tools and made adjustments. Now the headrest is further back and in a more natural position, and after a few hours of getting used to it, I'm driving fine. On my next visit we'll move it back still further. Very happy.

Me jumping for joy: a seat elevator to reach the peanut butter.

Same thing with my armrests and my hands always being in my lap. For one thing it was terrible posture and was contributing to my poor digestion and poor breathing, which you can hear in the lack of power in my voice. Another concern I had was the cell phone mount that would go on my new chair and threatened to make the profile of my chair even higher and unable to fit underneath our furniture and countertops. Already Nancy was just able to scrape under our dining table. Any taller and I would lose more access in my home. So, the seating techs heard this and got to work trying out a couple of ideas. The phone mount would go on my armrest and unfortunately we could not lower the armrests at all, but what the techs did was to angle the front of the armrests down slightly. This accomplished a lot of things. The slightly lowered position allowed my arms to stay up on the armrests better, and suddenly my permanently shrugging shoulders now looked squared-away again -- I forgot what that looked like, but man it felt great. My posture is so much better. Plus, when we arrived home we found out that I could easily get underneath my table and desk now. Before, I had to have things perfectly positioned in order to just barely squeak in. Win-win.

Wow, were we happy that day. It was like getting parts of the house back again. And we didn't even have to call some expensive remodeling contractor. The crazy part was that I had asked for these things for a couple years at least, and from a couple of different DME outfits, including these guys. But here in one 90-minute session they fixed all of it. Why now? One, I guess we were being persistent. Two, was bringing my wife along so I had backup and another voice and set of ears. Three, was overcoming the techs' misgivings about messing with a setup that was adequate but not perfect. They explained that it was because of their experiences from working with a lot of people with a lot of different setups. To break through their protective shell, we had to keep requesting and reassuring them that change was what we truly wanted. By doing so, we scored a jackpot.

In a few weeks Nancy will be grazing in a meadow as my backup chair. And now I'm also more confident that my next chair will be even better. Straight up.