Obi is a simple, clever eating aid. Here's my review of 3 years of eating independence.
Saturday, October 9, 2021
Friday, September 17, 2021
If you polled people with disabilities on what superpower they’d choose, the simple power to write disability parking tickets be near the top of the list. What if you could skip the hassle of calling the police and hoping they show up? What if you could write the ticket yourself? In some cities, you can! Meet the Parking Protectors: people with disabilities and their allies who volunteer to preserve access. My new article: https://newmobility.com/meet-the-parking-protectors-avengers-for-access/
The parking protectors are people with disabilities, family and friends, seniors, veterans, retired doctors and lawyers and anybody else who knows how important access is and a passion to make it available. I loved telling their story!
Plus the great illustration by Doug Davis! Thanks to Ian Ruder at New Mobility.
Wednesday, September 15, 2021
My new post at The Mighty is my take on 30 years of support groups, the good and the bad, because the National Multiple Sclerosis Society, The Mighty and little ol' me are launching a big new support group called Multiple Sclerosis Connections at The Mighty. Why don't you come on down?
Thursday, August 19, 2021
Sometimes I go around sniffing. You know, like a dog goes around sniffing? I'm driving my wheelchair in circles, sniffing.
Then my poor wife comes along. She says, "What are you doing?
"Do you smell that?"
"That! Can't you smell that?"
Now she's going around sniffing. Rolling her eyes. "I don't smell anything. Let's go."
"Hold on." Now I'm turning my chair in the opposite direction. I'm going to trick the smell. But it's smarter than me. "Hey, would you smell my shirt?"
She sighs and does it. Nothing. Somehow, after all these years, she hasn't strangled me yet. But she draws the line at the garbage can: I've got to do that one myself. Maybe it will turn out to be a smelly old hamburger or something, I hope.
An old dog sleeping by a bench looks up for a moment, thinking, "What are you working on, buddy?" But he sizes me up for an idiot and goes back to sleep.
These are the things I do ever since my first public accident. Right, I mean that kind of accident. Yes, I'm going THERE.
Around the time of diagnosis, I was getting my crash course in MS, quite literally, because I was falling several times a day. My balance and foot-drop were so bad that even a cane or walker could not prevent falls. At the same time I was having problems with urgency and bladder control. In spite of pills, control pads, different catheters and all manner of cringey rubbery, hosey things, the failures were constant. It didn't matter how hard I tried, accidents happened at - or right before - work, school, and most importantly family functions. Social life? That evaporated about the same time as my confidence.
The cruelest part was how mobility and bladder problems combined. With prescription meds like Ditropan (oxybutynin) and others, the advice is to drink a lot of water. But drinking a lot of water doesn't work too well when you're clattering down the hall in a walker. So how do we solve this dilemma? We didn't, and my medical team never had answers. Really, this had nothing to do with the meds, because you have to drink water regardless, right? The problem was that I had pretty weak medical supports. Plus a ton of bruises and stinky laundry. Welcome to chronic life, kiddo.
With something like this, your entire existence -- your schedule, your social life, your work life, your time, your nerves, you ego, your sleep -- takes a merciless pummeling. But this is not a sad story, because it has a happy ending. True, the root problem did not disappear. However, MS becomes livable when it levels off and you can start managing your symptoms and techniques. Life has returned to normal (my version of normal) and I'm never going back.
Still, That Smell is burned on my brain. I don't have PTSD, but I definitely have Pee TSD. When I smell anything close to it, the hazard-lights in my head start flashing. That smell could be anywhere. My clothes, my seat cushion, my wheelchair, medical supplies, skin, tinfoil hat, anywhere! It could be somebody else's smell, or something else's dog. Or it could be nowhere at all. Am I smelling this smell, and nobody else is? Am I not smelling this smell, and everybody else is? Am I losing my mind? Maybe I should spin my wheelchair in the opposite direction... right... NOW. But the good news is that these surprises are far, far fewer than ever before. (A major shoutout here to my incredible wife/caregiver, who ought to have eight arms to manage it all but somehow gets it done with just two!)
The other good news is that besides successfully managing symptoms, I'm just more confident with my MS. Because of course the smell is not there. Almost all of the time it's not. Occasionally it might be, and guess what? That's not the end of the world.
The ones who I admire the most are those who've reached the point where they just own it. With MS, with disabilities, they embrace it all and wear it like a full-length flashy gown. It's no sin, it's your skin.
When I was in grade school we read a short story about a summer camp for kids with disabilities that sounded a lot like Crip Camp, last year's amazing Oscar-nominated documentary about a camp that helped raise up a generation of world-changing activists. The campgoers in the short story were friends with a unique bond and snarky teenaged senses of humor. The one thing I never forget is that one kid is named Acrid. He had that smell. He also had a great time. He was an equal of the others, and was loved equally by them. That riveted me. Little did I know that he was the shape of things to come.
I'm now many times older than Acrid, but I still don't have his zen. I'm still trying to achieve total Acrid Zen. So if you see a guy sniffing around the park, or a flustered lady strangling him, don't call the cops. We're just working through our thing.
(Extra Credit: does anybody know the name of that story?)
Thursday, July 15, 2021
We returned from our trip, and as advertised, it did not go according to plan.
We spent a couple of nice days, especially in Lincoln country, central Illinois. The town of Lincoln (off of I-55, 35 miles north of Springfield) was named for the man while he was alive, and actually christened by him with a cup of watermelon juice - he sliced open a melon and poured it on the spot. You can see the spot, where there stands a watermelon statue, no kidding. The man knew his audience.
There's a small Lincoln Heritage Museum that's worth a visit, sort of a bookend to the presidential library a half-hour south in Springfield. It tells his life in a nutshell, with high-tech exhibits. These were broken - again, not according to plan. Instead, we had a one-on-one tour with history prof and writer Ron J. Keller (Lincoln in the Illinois Legislature, 2019), which we liked way better. So there.
Lincoln IL is along old Route 66 and it's fun to drive around looking at the sites. Then we found a great little campsite, Camp A While, write-up to come. These were the good parts.
|The Mill restaurant on Route 66, now a sometime-museum|
The bad part was the whole rest of the trip when I got sick. We were super-frustrated, and it was a ton of work for Mab. The RV is a lot of work to her on a good day. That's what we signed on for. But if things go badly, well, my sick doesn't clean itself. A couple of times she was in tears, while I cursed myself under my breath.
These lows were terrible low, but in two years the highs are higher and more of 'em. We're already planning something three weeks from now. Mab's a soldier. I'll follow her lead. Have Mab will travel.
Plus there was this:
|She finished her 300,000 Step Challenge while we were on the road.|
Almost 150 miles in one month!
|Can't find a pic of the finished chart. |
It's still hanging on her side of the bed.
Tuesday, June 22, 2021
We're hitting the road again soon. Already I know things will not go the way we planned.
How do I know? From Mab. She has done a lot of traveling. She lived in Switzerland a few years and really saw Europe. Backpacking, constant weekend trips, saw all kinds of stuff and has a ton of stories. I've done a lot of road trips, but she's traveled.
When we started in the RV, she looked me in the eye. She said, Things are going to go wrong. This I promise you. Things will not go according to plan. Know that going in. You're traveling, deal with it. Words like that.
That's also what I heard John Morris say a the stage at the Chicago Abilities Expo. Things are going to go wrong. Morris is not a pessimist, he's an expert. He's been all around the world in a wheelchair, which he writes about at WheelchairTravel.org What I remember most in his message was to be prepared, know your rights and enjoy the adventure. Embrace the inevitable, figure it out and still enjoy epic self.
OK, so that's two people I heard from. Then I saw it in action.
You have to be hands-on anyway to travel in an RV, ready to roll up your sleeves and get things back up and running. A lot can break down, a lot can go sideways when you're wheelchairing through set-ups like ours. And since the whole purpose of the thing is to get away from it all, who knows where you'll be when something does go down?
|Joe Pool Lake on a nicer day.|
We were camping in Cedar Hills State Park right outside of Dallas. It's a beautiful place because you can feel your mind clearing itself as you drive through its woods (cedars are some literally gnarly old trees) to the campsites on a lake. So it's a peaceful refuge from the world - however if you look real hard, from a certain angle, miles beyond the lake I could make out the outline of one of the stadiums, like a continuity error in a movie. But we couldn't see it from our site or from most of the other sites either. Anyway, we had hurried away from Houston ahead of Hurricane Laura and it felt so good to have found this place. We slept late the next morning and marveled at the blue sky through our skylight, with an occasional white whisp of cloud racing by overhead. Moments like these were why we chose to buy the RV.
Wait, she said suddenly, the skylight cover is smoke-colored.
You opened it overnight? I said.
No, I didn't, she said. She checked, and there was no cover there at all. Our RV was open-air. Like the Pantheon in Rome, except it was only two years old. We had no idea. It must have flown away during the drive to Dallas. It was the second one we would have to replace in a year. The one in the bathroom had cracked several months earlier. Like I said, like the Pantheon, but not like the Pantheon at all.
Instantly, serenity became anxiety. It was Labor Day weekend, we were on unfamiliar turf, and we heard it's hard to find RV repairmen right away. That turned out to be true. We called all kinds of places, and we called Good Sam roadside. We struck out all around. To add tension to the plot, we were due for rain that afternoon, spillover from Laura. And it was true, the faraway skies above the stadium were definitely a different blue, the kind of blue that wants to rain on you. Further tension: our bed is directly under the skylight. Just imagine.
Mab snapped into action. Cue music. We were still relative newbies and had no ladder to climb on our 12-foot roof (and I wasn't crazy about the idea anyway). Instead of tearing open grocery bags for a patch, we cut up a vacuum-storage space bag, much stronger. We lifted the bed on its vertical track - it lifts up to the ceiling - so that she could reach the skylight easily. Then she climbed on the bed and got to work. The job was to seal the hole tight with plastic and duct tape from the inside of the trailer, without an outside view of what's going on. She worked and worked for what seemed like a couple of hours. Her mind and skinny little fingers were busy, never resting, feeling around, prying, pressing. I don't know how she did it, but she sealed it outside and inside with tape. It was really something. And, not a moment to spare: when I looked outside, the low grey rain clouds were creeping across the lake. Deep breath. It's a hard rain's gonna fall.
|Please, baby, hold!|
In 20 minutes, it started. The plastic pounded with rain. The deluge didn't last long, but it was intense. But the shield held! No leakage. Amazing. It held all weekend long, although I don't think we had any more rain. On Tuesday, the first business day after the holiday, we were lucky to find a super helpful place south of Oklahoma City, Silverado Road service diesel and RV repair shop, 6700 South Eastern Ave., Oklahoma City, OK 405-830-8792 silveradoroadservice.com They took care of us right away and did not take advantage, very affordable and fast work. When we pulled in to the shop, the Mab shield was still there after driving a few hours on Interstate 35. She rocked it. The guys in the garage were impressed, but not as much as me. They said the original skylight cover had been not been locked down and so had jiggled a little ways open, then tore away, while driving. So many things to remember.
Now we're gearing up again and she is proud to have figured out the fix to a broken water heater (a fuse) and purchased and installed a backup camera on the RV, with a little help from our friends. Last year on the road, she fixed a leak behind the toilet, which is a small, small space to work. All these surprises and more from a two-year-old trailer (not the Pantheon). She is tenacious! Definitely living what she preaches.
We're about to shove off, so there will be more things to pop up. Because things ain't going to go the way we plan. That isn't going to stop us either. And that's life anyway, right?
Saturday, June 12, 2021
Every once in a while I tell a friend on the phone, "Gotta go! I'm exercising with Mab (my wife) in five minutes."
And he may go, "Oh ho ho! Is that so?" because he knows I'm quadriplegic and I know I'm quadriplegic and maybe I'm talking code for some extracurricular activities about to go down. You know, the old wink-wink, nudge-nudge, say no more. (Any Pythons in the house?)
But I say, "Nope, gotta go, bud, can't be late. Bye." Quick, she's already casting it to the TV!
So now my friend's saying and probably you're saying, Dude, what kind of exercises can a quadriplegic do?
These are exercise videos that Mab started doing during lockdown. Planet Fitness began putting out free ones daily, with newbie-friendly exercises. Not her thing at all, but she was climbing the walls and was surprised to find herself having fun doing them. When retired NFL star Julian Edelmann led a session, I sat in for laughs and support. It grew into something to do together.
So, how the heck can a quadriplegic exercise? Is it wishful thinking? Is it woo?
It's not woo. I'm actually doing this stuff, and sometimes by the end I'm out of breath and heart's a-racing. That's all real. In fact I crave it because wink-wink, nudge-nudge, there are few other activities as exhilarating.
Is it wishful thinking? No, it's not that either. I'm not pretending or hoping to exercise my way out of the wheelchair. I'm not trying to sell a book or diet that in 30 days is going to have you moonwalking across the floor.
So, what am I doing? Pretending? Scoring points with my wife? Because I'm putting in the time, many minutes over many days. It could be the power of positive thinking, but I'm thinking it's more than that. I'm thinking it's like dancing.
Do you know when you're on the dance floor and you hit that groove where the music sweeps you away and takes control? I was a terrible dancer, but even I had moments when my body surprised me with a juke here or a slide there, neither of which I planned or thought of in advance. It was the music cranked it out of me. Can you relate?
So now I watch and listen to the routine going on and try to move whatever's supposed to be moving, whether it does so or not, mostly not.
Even if not, there's a type of exercise called isometrics where there's little or no movement because you press your muscles into or against resistance. Oh, it'll tire you out. That's what I'm doing.
I might try pumping my arms in a curl. Looking down, I may see they moved a centimeter, a millimeter or not at all, but I feel the muscle firing. Other times I swear I'm wiggling my toes or my foot, then check to find nothing at all. But I feel it firing: the muscles? the tendons? the imagination? Who knows? But I can tell you that after 20 minutes or sometimes even 10, I can feel my heart racing. From where I sit, any kind of cardio exertion's good indeed.
The best ones are trainers who throw in a lot of vocal cues and descriptions of specific muscles being used. I respond better, with better results.
I have some proof. After a while, sometimes my legs kick or arms move. It's not all the time, but it's like magic. Sometimes a jerk, or sometimes it goes on and on like a car in winter with engine knock, chug-chug-chug-chug-chugging long after you pulled out the keys. (Do they still do that?) It's funny and it's gratifying.
My torso, shoulders and neck are stronger, too. A lot of people in chairs end up slumping, me included. But I drive with my head, by pressing sensors in my headrest. The better my upper-body control, the better my access and control over my mobility. Also, the better to avoid injuries to neck muscles and bones.
Besides, doing the work keeps my head in the game. It's what we do every day, to boost one another up. We even started looking forward to it. (I know: bizarre!) So we got up to day 123. That's not a brag, it's a lifetime. Then Mab got an attack of vertigo for a day - it's an inner-ear problem (BPPV) that comes and goes. We had to start all over, and got to 9. That's when I got together with some buds for the first time in 14 months, and we reunioned a little too hard, which wiped out most of the next day. Yeah. So we started over again, and today is 25. Again, just clinging to my liferaft.
I've said it before, lockdown was same-old same-old to a lot of folks with disabilities. If you say 20-minute exercises will make my legs kick, keep my brain from turning into mayonaise, and sculpt my wife's legs? Cast that video.
Any quads out there with an exercise program? Tell me what you do.