John Madden Called It the Telestrator. We Call It Monday.

  Last month, the bell tolled for John Madden. A lot of bells, actually, and he earned them. He was great at what he did, and he did a lot of it.

Head coach for the champion 1970 Oakland Raiders football team. Ten winning seasons, zero losing seasons. He won three of every four games he coached. On each will one of those games, he'd blow his gasket stalking up and down all 100 yards of the sidelines.

He channeled all of that passion into broadcasting. Commentator John Madden had a blustery style. In his early days in the booth, you could hear his meaty face reddening and blood pressure spiking through the speakers. To him, a routine three-yard run was a small war:

"Look at those linemen - there's a lot of beef packed on that line! Watch how they power into the defense. Boom! You can hear the bones crunching with your eyes!" Exclamation points, exclamation points, and more exclamation points. The name for it was passion. Sportsfan or not, people are attracted to joyous, unbridled passion. And exclamation points!

Over the years Madden mellowed into a knowledgeable teddy bear, great for landing endorsements for garden hoes and low-calorie beers. Then Electronic Arts named a massively successful videogame franchise after him. And then (catch your breath here) at some point his producers pushed into his hand a clever technology that now is so taken for granted that most NFL viewers have no idea that it has anything to do with Madden. The Telestrator let the announcers doodle on your TV picture during play-by-play. With 22 players in motion on every down of football, the Telestrator made a good toy for Professor Madden to explain the action to his audience.

He'd circle the quarterback: "Here's Montana..."

With lines and X's, he'd show the design of the play: "... and here the defensive-ends collapsed the pocket on a blitz..."

Then he could break down the results:  "... so Montana stepped up in the pocket and boom! he's got all this open real estate in front of him."  

But the secret history of the Telestrator, my friends, is that it was not invented by a TV company or a gifted and gregarious football announcer, no! I've got it on good authority, and personal experience, that people with chronic illnesses, mobility impairments and disabilities have been using the Telestrator long before Madden ever uttered his first Boom - in fact they have been it using throughout history, maybe all the way back to the ancient Egyptians. (Exclamation point, exclamation point.)  Using the Telestrator is what these mighty people do every day, all the time. To them, seeing circles, arrows and dashes becomes second nature, a way of life. 

Let's go to the tape. Here's some classic footage from the Eighties, when the Telestrator was still in its crib. Here's a guy in his early twenties, waling into a convenience store late at night: because of chronic fatigue he overslept and the grocery stores are closed. And see this circle right here? That's his walker, because he has MS. He's here to buy food, but energy is a problem, so he has to 1) do it safely and 2) in as few steps as possible. How's he going to play this situation? Let's look.

-- Like an expert coach, he plans the best strategy, the shortest route, the most efficient path to avoid traffic or doubling back: "The milk is here on Aisle 6, but you can't eat milk - you need cereal! Even better, you need raisin bran because then you don't have to walk over here to the produce: the fruit's already in the box! Two food groups in one, Boom! fewer steps. Raisin bran is over here, end of the aisle and turn left. But that leads you into this pallet of toilet paper that need to be stocked... and there's no one around stocking it! Who does that? See this arrow? That's the clerk, arguing with his girlfriend on the phone - he's not going to help you. So you have to cut back and go the long way around the Slurpie machine." 

-- He's aware of the condition of the field: "Watch out for this freezer. See the spot I'm circling? That's leaking water. And over here, a freshly mopped floor. One slip and oof! your season is over."

-- He knows to be prepared: "Exits, exits, always looking for exits. Does the door swing inward, or out? Push-button, automatic or spring-loaded? Knob or handle? Is it a heavy door? Does it stick? And of course: A-K-W-T-B! You know what that means, don't you? 'ALWAYS KNOW WHERE'S THE BATHROOM!'"

Do you get the idea? Good. For the next play, let's fast-forward a couple decades and watch the same guy in a wheelchair, stopping in at a friend's party after a million invitations because he doesn't want to be rude and plumb ran out of excuses not to:

-- First thing, check the turf: "I'm circling this sprawling throw rug because throw rugs squirrel up and can be a major obstacle. Players want to avoid this hazard. Things are getting sticky already."

-- Scout the defensive formations: "See this coffee table here? this rocking chair there? and this entertainment center right here? They're stacking the middle: there's no way you're getting through! What that does is create running lanes down the sides (dot-dot-dot-arrow). Are you a good driver? You'd better be, because these lanes are narrow, people step in and out of the way, and right here we've got the sharp edge of a fireplace mantle jutting out. Plus if you're not careful you'll scrape the wall. Out of bounds!"

-- Gauge the home crowd: "These scattered toys right here! They belong to these two little guys playing video games halfway across the room. (Hey, those nippers are playing Madden NFL, aren't they? Smart kids!) They're hypnotized by the game and can't hear a word you're saying, but look how the stretched chords prevent all movement. Your offense is bottled up! Perfect D."

-- Clock management skills: "Once the party gets rolling, it harder for you to keep rolling. This joint really filled up, huh? Where once there were spaces, now you are butt-high in a room full of strangers. Looks like you should have gone with your hunch and left 15 minutes ago. But boom! here's a corner for you to sit and wait for a hole to develop, and then pow! you'll make a break for the end zone. Hey, at least you ended up next to the Christmas tree. Let's draw a star on your head, and now you've got matching stars! Are you having fun yet?"

-- And remember the key to every gameplan in every place you go (say it with me, people): "A-K-W-T-B: ALWAYS KNOW WHERE'S THE BATHROOM!"

Put Your Heart Into It: Support Those Who Support Us

These are polarizing times, my friends, but there are some basic things we'll always have in common. Most of us love chocolate. The laughter of babies. And Scooby Doo. But even more basic, since you're reading this now, is that your heart is beating. No matter who you are, where you are, what you've done today, or what you're going to do, I predict that your heart is beating. Mine is, just talking to you right now. You have that effect on me.

It beats dozen of times every minute, thousands every hour. Bump-bump-bump, it keeps on pumping. Bump-bump-bump, delivering nutrients and oxygen to power the whole machine that is your body. It's the thing that never stops, no matter whether you're running a marathon, binge-watching a whole weekend of TV, or jumping a row of school buses with your motorcycle in front of Caesar's Palace, it's always going in the background, bump-bump-bump. Beneath the hundreds of conscious things that we do day after day, we take it for granted that, bump-bump-bump, it is still beating. Bump-bump-bump. Without any accolades, or even a social media account, it goes bump-bump-bump.

There are people who function like this, too. People doing the kinds of things we rely on without us ever thinking about it. We learned this in a big way during the lockdown. Suddenly everything shut down, suddenly things that we needed on the daily were no longer there. But we still needed to grocery-shop, fill up with gas, and use electricity for our computers to run Zoom, right? Those store employees, service station attendants and utility workers got new respect and a new name: essential workers. Like our hearts, they were working in the background. The whole time, quietly, diligently, day and night. Suddenly they were everyone's new best friend. Everyone hearted them.

Like our hearts, the essential workers continue producing even though we might treat them like crap. Some essential workers got pay bumps when everyone realized just how essential they are. Many had the extra pay snatched back away when things were deemed safe again. And now, some employers are having a hard time attracting these ex-essential workers. Similarly, one out of 5 healthcare workers have left their jobs. I wonder why. Like the hearts in our chests, if we treat them badly for long enough, they stop hearting as much.

One special class of essential workers have been putting their very lives on the line taking care of Covid patients in the hospitals for almost two years. Healthcare workers have labored under extraordinary stress, overwork, privation (remember how long it took to catch up on PPE?) and even disrespect and physical attacks. They continue putting themselves at risk, treating others who have refused to take the simplest free measures to protect themselves. This goes on because healthcare workers are a tiny minority who work in enclosed spaces out of sight from the rest of us. But whenever we've got an owie, they #$^& well better be on duty and waiting for us with hot coffee, right?

This is similar to the deal that military people get. A tiny minority serves and fights, often returning to war time and time and time again. It goes on because they are out of sight from the rest of us. I'm writing this on Veterans Day, when we like to thank them for their service. But on the next day, are we caring enough for the 40,000 vets who are homeless? For the 17 vets who commit suicide every day? For their families who go hungry? Or are they, and their sacrifices, out of sight out of mind too?

Caregivers are treated the same way. November is National Family Caregivers Month. Those who ensure the well-being of our ever-growing population of elderly, children and people with disabilities, are in crisis. For instance, base pay in our second-largest state, Texas, is $8.11 per hour, when one can go down the street to deliver pizzas for much more. One in five people are being cared for by unpaid family members. About the same percentage must provide unpaid care to family members. Mostly, this affects women, whose ability to work has already been jeopardized by the measures taken by schools to control the pandemic. We do not even have paid emergency and family leave provided by all other rich countries, even though it's overwhelming popularity with voters of all political parties. Again, here are people who work and sacrifice away the public eye.

Like our hearts beating, the caregivers, healthcare workers, military, first responders and essential workers keep things working and keep saving lives. They will continue doing so even though they are taken for granted, bump-bump-bump. But in the richest country in the world, is that the way we really want to do it? Wouldn't it be much better to take good care of them, which in turn takes good care of us?

As for our caregivers, there is a definite way to help, right now. We can call our senators at the U.S. Capitol Switchboard, (202) 224-3121, and demand support for home-based caregiver services and for family leave. There's a historic bill before them to support these now. I say this without regard for party: about 70 percent of us will end up needing long-term services and supports, and age and disability will come for all of us in a truly bipartisan fashion. Tell them to support these essential caregivers. Tell them to have a heart.

The Ups and Downs of Support Groups - my new column at The Mighty

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?

Oo That Smell

By Wheelieoutthere

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?"

"Smell what?"

"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?)

Trip Update - Have Mab Will Travel

        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. 

Abe schoolin' me outside the museum

Lincoln Heritage Museum

Our guide knew his stuff: Ron J. Keller's book

On the campaign, they called him "the Woodcutter" 

        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.

Expect the Unexpected

        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.

Aftermath. Relaxxx.

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?

How the Hell Can a Quadriplegic… Exercise?

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?

Fair questions.

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.