The Parking Placard (Black n') Blues

or, How I Learned To Stop Worrying and Love the ADA, Which Just Turned 35

Thanks to the Underground Bookshelf for awarding this the winner of its Disability Pride contest. It will be featured on their website next month.

It’s an epiphany when you realize for the first time that the white stick-figure on the blue parking sign is you. That's you. Now you can park in that fat sirloin of a spot. Now you are “the disabled.”

For me, this leap to disabilityhood was as every bit as much a mental process as a physical one. And I fought the knowledge, down the line, tooth and nail. I always did, with every new adaptation or assistive device, fight, fight, fight. To some that sounds courageous, but really it’s ridiculous. But I was young, I was always healthy, and I was a guy. I didn't need no stinking hot parking placard: that's for other people. I didn't need nothing. 

I had a thick head. 

So what changed my mind? I can’t remember the moment I decided to pick up a disability parking application. It must have been some watershed event, perhaps my 1,000th fall, the one that rattles your very teeth. Falling itself was no big deal by then, and I might do it a half dozen times in a day (at least that's how it felt). After a while, my body looked like Keith Richards’ after a bender, but cry-cry, I dusted myself off and got back in the game – because you've got to, nobody's going to pay your rent. But maybe that 1,000th time was the one to slosh my brain in its comfy bath of cerebrospinal fluid: Wake up, you green-gray piece of fat!

I used a walker then. An aluminum walker, to go along with the studs of my biker jacket. I would drag the thing to the grocery store for a few items, forgetting half of them by the time I reached the aisles. No browsing, no price-shopping, just throwing things in a shopping bag, and teetering back to the checkout while I fished for cash. Then I dragged my Frankenstein feet out to the parking lot again, cars politely navigating around me   the occasional Einstein would honk, not that I could turn around to see him, not that I could reach around to flick him off.

As my legs exhausted themselves, my steps grew smaller, smaller, until my energy exhausted itself and my limbs locked into jointless boards due to muscle tone. In the middle of the parking lot, I stood stock still, like performance art, like the Tin Woodsman before Dorothy Gale came along. 

The walker had wheels on the front legs so I could push it along instead of lifting and planting it with every step. But once fatigued, I lost the power to hold the walker in place, and the wheels took on a more insidious role, creeping forward slowly. As they gained momentum, I thought, 'No, no, not again.' Unable to lift my feet, my upright posture deteriorated into a letter A, opening wider and wider as the walker rolled away. I couldn’t let go   my hands were locked   so at the fateful moment I'd take a deep breath and bail, thinking: Don't land on the Chef Boyardee!

This happened once on a cold winter's night, after my friend and I attended a wake and, on the way home, stopped for a nightcap. The tavern parking lot was a thin, solid sheet of ice. I straggled back to my car, up a slight incline of drainage built into the black asphalt. Along the way I stopped to rest, talking to my patiently shivering friend while we waited for my legs to unlock.

I detected motion. Yep, I was sliding backward over the ice, in the direction of the drain. I was unable to move or resist; like a Gemini astronaut, I was only along for the ride. At the time I had no idea where I was going: I wasn't even facing where I was headed.

My buddy circled around nervously. “Hey, Fred Astaire, what do I do?”

I was picking up speed. So I had to be honest with the guy. “I got nothing."

Jim dug in behind to brace me, but honestly, in our leather-soled dress shoes, we might as well have been wearing ice skates. At this point he's pushing back simply to save his own hide. But there was nothing he could do; there was nothing anyone could do. We were a runaway train, and I was taking him down with me. Sometimes you're the slowly rolling bowling ball, and sometimes you're the pin. He was the pin.

I could imagine what it was like for someone sitting in the warmth of their car, watching us gliiiide across that parking lot. Floating, gracefully rotating in space. Maybe the Blue Danube Waltz was playing on their radio, while we skated from one side of their windshield, all the way to the other. … Faster and faster… Have you watched curling in the winter Olympics?… On and on and on…

What would become of our intrepid lads?

That’s when I started laughing. When things are out of your control, you do well to laugh. In Chicago when freezing your behinds off we often laugh it off with friends. Because it's better to freeze your heart behinds off together and be laughing, than it is to freeze your behinds off with a straight face. And that's the science behind that.

Also, convulsive laughter is helpful in defeating spasticity. In an instant, we were a giggling heap of metal and man sprawled across the dark ice. In our slick shoes, we'd be stranded on that parking lot a long time. For the life of me, I can't figure out how we ever got up again.

Lucky were the times when there was a friend around and frictionless ice to fall on. More often, it was a sidewalk or a bathroom or a busy street crosswalk, hopefully with one or more gallant onlookers there to drag me out of danger and stuff me into my car. After rebuffing their offers for medical assistance, I would fall asleep on the front seat, sometimes more than an hour, sometimes with the engine running.

Somewhere in there happened magic No. 1000, the one to knock some sense in my noggin, the one to make my noggin scream, “Get the blue placard, already!”

Before then, I clung to a weird, outmoded notion of what independence was. But once I crossed into that thin blue sign, what I found waiting for me was a Technicolor world of fuller independence, of accessible services, jobs, housing, education and protected rights, medicines and tech and yes, even decent curb cutouts and primo parking spaces   a whole societal push to involve everyone, including me, and bring everybody to the decision-making table, even hardheaded fools who happened to fall upon the right decision one day, after he fell absolutely every other place first.

Viva the ADA. Let's get riled up and make sure it lasts another 35 years and another hundred after that.

Girl, it’s so worth it: This red nylon sheet is a powerful tool for caregivers

At Endeavor rehab, when transferring me to bed for the night, a couple of the nurse’s aides lowered me onto a torso-length red nylon sheet spread on the bed. They used this sheet to move me on the bed. My roommate in this place was recovering from shoulder surgery, and turned out to be a real busybody. She always had her nose in my business. “What’s that?” she said to the female aides working on me. See what I mean?

“We use it for positioning,” the aide said about the red sheet. “It makes things easier. I use it all the time.”

Or do you say "slide sheet"?

The roommate got on her phone and found it online. The aide explained that the sheet comes in one-ply and two-ply versions. Some people like the one, other people like the two, it all depends. “Either way, it doesn’t cost much,” the nurse said, “Girl, it’s so worth it.”

“Huh,” said the busybody. She was working that phone of hers, so I had a premonition that at some time in the future I would be seeing one of these at my own home. I guess I should mention here that the roommate was also my wife.. Details, details.

“Done,” she said. “I ordered one.” See? The nurse’s ‘girl’ sealed that deal.

I should further disclose that the roommate is also my caregiver. Also that she and I are mighty grateful to that aide because the red nylon sheet has proven to be a very useful tool over these last several, eventful months.

The way the sheet works is that the nylon material is so slick that there is little to no friction when sliding. Mab will lay it out on the bed and lower me onto it with the Hoyer. The sheet is about 26 inches from top to bottom enter before we incorporate and about 52 inches side to side — only large enough for my bottom, but I guess that’s where most of my weight meets the bed. ( ! ) (Do you like my character? I came up with it just now.) Next, by grabbing an edge of the red sheet, she can more easily slide me into position higher or lower, or side to side.

Also, since we ordered one that is a continuous piece between the top layer and bottom, she can pull the red sheet out in a really nifty way. From the side of the bed, she grabs the bottom layer of sheet and pulls it out from under me. With several small tugs, one after another, she pulls out more and more of the bottom layer, while the top layer directly under me lies undisturbed. Eventually even that top layer gets tugged out, and voila, she’s pulled out the entire sheet without having to turn me over this way and that, like she would to remove a cotton sheet, for instance. It’s pretty ingenious. And the more she uses it, the better she gets with it, and the more uses she seems to discover.

A good example was when we broke an axle on our travel trailer during a recent cross-country trip. We got stuck in a Motel 6 for a weekend until we could arrange a repair for the trailer. Of course, like so many hotel beds nowadays the motel bed was on a platform. Many of you know what happened next: We were unable to use the Hoyer lift to transfer me in and out of bed because the platform blocked the Hoyer’s legs from rolling underneath. Bed platforms are everywhere in hotels across the country and are the reason we moved to a travel trailer in the first place. We have many horror stories about dealing with platforms and with hotel management concerning them. But wait, now we have the red nylon sheet. Stand back, citizen, and watch it work its wonders!

Rather than brute-force me up and out of my wheelchair, my brother had the great idea of lowering me onto the corner of the bed as best we could with the Hoyer. So, I was barely on the bed and way out of position, but I was on top of the red nylon sheet. My brother took hold of the sheet and slid me all away up to the top of the bed, just like that. His eyes bugged almost out with surprise at how easily it went. Actually it was pretty fun!

We are especially glad to have it now with Mab's still-healing post-surgical shoulder. She’s been operating carefully with 1.5 arms. Since she insists on still caregiving for me, but her using the red nylon sheet, the tasks of moving me around, and pulling the sheet out at the end of the process, are all much easier and safer. Thank goodness.

The cost of this wonderful aid: $12.

If you’re a caregiver, or know a caregiver, then girl/boy, you need to know about this one.

Here are some demonstration videos.

Hard days night: To CPAP or not to CPAP? My New Mobility article

For years, Jennifer Miller, 55, of Carleton, Michigan, was a problem sleeper, snoring and gasping through the night. Because she struggles with PTSD from the car crash that injured her spinal cord — and isn’t the biggest fan of doctors and hospitals anyway — she put off seeking treatment for her sleep issues. “I didn’t say anything for a long time,” she says. But that changed a year ago, on a night that literally left her speechless. 

“I couldn’t find breath and I couldn’t say anything. I couldn’t wake up my fiance. I had to sit up and … kept trying to breathe in and nothing was happening,” Miller says. When finally she could draw a breath, her sleep issue had new urgency. “It scared me [and] prompted me to actually speak to the doctor.”  

Illustration by Mark Weber.

Miller’s overnight scare is an extreme example of sleep apnea, the interruption of breathing during sleep. Sleep apnea is experienced by between 9% and 38% of the general population, according to one study, but within the disability community it can be much higher. More than 80% of those with T6 -vertebrae-level injuries and higher have sleep-related breathing problems, according to pulmonologist Dr. Abdulghani Sankari of DMC DRH Sleep Disorders Center in Detroit. In those with disability similar to mine, at C4 and higher, the rate is more like 90% of people.

So then it's no surprise that I turned out to have sleep apnea. Although I didn't learn about it as dramatically as Jennifer Miller did, but I still do so remember exactly the moment I found out. I'd just switched to a new neurologist, Daniel Wynn of Northbrook, Illinois, who would change my life. My daily 20-minute naps clued him in to order an overnight sleep study. Shortly afterwards, he left a voicemail … on a Saturday afternoon: “Mr. Mohler, you have very severe sleep apnea.” My sleep study report read like a horror movie script. In six hours, I had stopped breathing 327 times, with full stoppages averaging 45 seconds each. In short, I wasn’t breathing for 2.5 of the six hours. My blood-oxygen level — considered healthy in the 90% range and severe below 80% — nose-dived to 62%. 

“At least we know you have a healthy heart,” he said later, “because if you didn’t, you’d be dead.” He always has a way with words.

Sleep apnea is nothing to snooze about. Uncorrected, it often leads to, fatigue, messed up decision-making and memory problems, as well as risks for high blood pressure, heart problems and type 2 diabetes. Chronic poor sleep has been linked to shorter lifespans.

The good news is that it can be effectively treated with CPAP and BiPAP machines — but for some people, the bad news is that it is treated with CPAP and BiPAP machines. Some people get used to the things, and others not so much. The masks and tubing come in various degrees of cumbersome, ranging from annoying and uncomfortable to triggering full-on alien-abduction vibes, with strange, elephant-like hoses and Hannibal Lector-type face masks. In terms of looks, they bring to mind the spidery face-suckers from the Alien movies, and they sound like Darth Vader gasping for air. And that push/pull between very good and very creepy, my friends, is the basis of a story:

https://newmobility.com/better-nights-better-days-cpap-bipap-and-disability/

How do you sleep?