Kicking around main street in Paw Paw, Michigan

Last week we camped out with a good friend in Lawton, in southwestern Michigan, between South Haven and Kalamazoo. Melville's 7 Lakes Campground is wooded and has lakes, and the woman in the office is helpful. But on the other hand, the campground's dirt-gravel roads and hilly terrain aren't especially wheelchair-friendly to check out those lakes, and the sites are a little too close for privacy, particularly at campfire time. Also, it is down the road from the Welch's plant where my grandmother worked for 20 years. This is fruit country, and it is where my dad and grandpa once bought a couple of acres of land and to start a blueberry field, long ago sold. We put a lot of work in and had a lot of family around here, and the campground was a good home base for us to look around the area and visit with our memories.

Melville's 7 Lakes Campground 269-312-0262, 14701 96th Van Buren St., Lawton MI.

Site 49. ADA, level pull-through gravel site, water, elect., no sewer, near bathhouse. $35 per night, cash/check only. Https://www.facebook.com/Melvilles-7-Lakes-Family-Campground-LLC-216925315021918/

We spent an afternoon with my uncle and aunt, whom we hadn't seen since before the pandemic. When you haven't seen one in a long time, you don't know what you're going to find. But they both looked great and jolly. It was a warm reunion with a lot of laughs. Days like this have turned out to be one of our favorite things about traveling the way we do. Intimate, unhurried visits, in spaces where we feel comfortable since we still are Covid-wary. But they are visits that actually get made and we really see people we want, instead of vague 'let's do that sometime' and glad-talk. And if plans fall through, no big deal, we're out camping.

In nearby Bangor, we visited the small cemetery where my grandparents are buried. By the eeriest coincidence, Mab's grandparents are buried there as well. Yet neither of us are from that area and we met far from here! Spooky strange. We were there in 1995 for the burial of my aunt, and Mab felt a weird jolt of déjà vu. She thought she remembered the burial of her grandfather there, when she was not even five years old. Indeed, her uncle (now deceased) confirmed that her grandparents were buried at that very cemetery, but we never knew exactly where. The city hall, where we could have looked it up, closed five minutes before we arrived. Anyway, skipping ahead, after much wandering and doubt, and in and out of the car and in and out and in and out of the car again, channeling instincts or spirits or whatever you want to call them, she found their graves! You should have seen how her face and body lit up at that instant. Unforgettable.

Down the road, Paw Paw is the county seat of Van Buren County. Lawrence and South Haven both tried to lure away the honor by building county courthouses, but Paw Paw built one itself in 1845. Now that building is the Paw Paw City Hall, because Paw Paw built a more impressive one in 1903 that is on the National Register of Historic Places. 

Kicking around main street, we peered through the glass into the Strand Theater and a sweet lady surprised us with a mini tour of the old movie place. It was converted from the stable of the volunteer fire department. The wood floors were original, the seats were not. A couple of the bulky old projectors were stored at the back of the balcony, which don't show up in the picture. Now it's only open for special events, but the popcorn machine works great and she made us a large bucket.

There was a lot more family overlay here that I can't get into, which along with the company made the trip quite special. A modest getaway, and probably not much to read or write about, but it was a family pilgrimage with some of the sacred in it for me and the kind of great moments we go out for. Getting out there generates its own rewards.

Fall: fun or not?

How do you feel when fall comes around? How does the MS react in you?

Fall used to be my jam! The dread summer heat and humidity had gone, and the air felt crisp, light and refreshing. With every breath I was breathing in energy. I would sit straighter. I would go places and get things done. I had awoken from a long drowsiness and was out in the mix again, before the winter came.

Fast forward a few years, and the same invigorating coolness in the air now feels like chill. It triggers my muscle tone, and leads to aches and fatigue. Now the sunshine is swapped out for dreary gray skies and wetness. Such is life: MS changes and so do we.

I still savor autumn, it's colors, it's smells, but I do so under another layer or two of clothing – and would someone shut that damn window please?

Your place of power: How online MS support groups can enrich your life

        Support groups are powerful places. They can be safe harbors, where we find friends, shoulders to lean on, or someone who will actually listen. How rare is that when we need those things the most?

        I’m no expert, but after 30 years with MS, I’ve seen my share of support groups. As many as I’ve seen, I still wish I’d joined even more and met even more people who shared my situation – because a good support group is such a lifeline. It’s a fire in the hearth on the longest night of the year, and in good times, is a wind in your sail because you know that somewhere is a group of people who know you’re not lazy, not “crazy,” and are fully deserving of dignity and respect.

        One of the most insidious enemies for me and others with MS is isolation. While we’re battling the five-alarm fires of MS (you know what they are) with everything we’ve got, isolation is doing its quiet work in the background, building up brick by brick. When mobility impairments, fatigue, depression and a host of other symptoms arise, so do barriers and isolation from the rest of the world. The terrible irony is that right when we need support the most, the barriers creating isolation in the first place are also turning the effort of going to group meetings into more a stressor than a safe harbor. That’s where online support groups become such a blessing.

        Continue at the "Momentum Magazine" blog: https://momentummagazineonline.com/blog/find-your-place-of-power-how-online-ms-support-groups-can-enrich-your-life/

Somebody Make These: Portable Access Blocks

We’re walking past a new development going up next to our neighborhood. Exciting, right? With brand new sidewalks ringing the site. Sweet curb cutouts, with the gripper things on them. Newborn concrete with the crisp, clean edges: I almost start baby-talking to it. “You’re such a cute cutout. You’re going to be so accessible. Yes, you are. Yes, you are.”

What stopped me, literally, was that those adorable curb-cuts on either side of the development’s entrance do not match up with the level of the road. They’re not even close. It's not a bump. It’s a shelf, it's a ledge. It's a No Way, Jose.

I've got to think that when the construction is done and the last big machine has rumbled away, that they’re going to repave the development and make things flush. My town is good about building in new accessibility and retrofitting what’s old. But here I sit. As Nina Simone would say, I want access now.

Enter the Mab, resourceful wife extraordinaire. We spied some sandbags lying around, there to weigh down a couple of iron separators to keep traffic out, after-hours. Because she works out, Mab was able to carry over a pair of bags that looked to be a size and shape we might work with. And work they did — and there they still sit, their radioactive yellow skins visible all the way down the block. Voile, accessibility. I’d show you right here but I still suck about pictures.

Ferne Clyffe State Park

.

OK, This story has a happy ending but it illustrates that even with “accessibility” present, there are usually many micro-obstacles and problems to be got around. In recent hikes at beautiful Ferne Clyffe State Park in downstate Goreville, Illinois, featuring the primordial limestone formations of that spirit-filled Shawnee Natl. Forest region, we ran into several of these junior obstacles that were enough to foil me on consecutive days. Loose rocks in the path, and concrete slabs and culverts that over the years have become displaced and inaccessible: things that are easily remedied with the smallest budgetary outlay – a few bags of concrete and to clear away obstacles once a month – and someone who gave a shit. I made a couple of attempts at Rocky Hollow Trail, but despite the help of strangers, and our getting further on each try, I was stopped right before the waterfall because of a smallish ledge to gain the final bridge. #$%^&*, as they say. Or how about paying a frigging camp host on site to make sure the campers aren't hijacking ALL the public water spigots? You’ve already commissioned the infrastructure spending, which is the hard part. Now let's give a crap and do better, Illinois DNR. (And an accessible trail at Starved Rock too, damn it.)

The best part of travel: These rockin' folks ;) cleared away a pile of stones.

Also the best part of travel: scenery (Ferne Clyffe SP).

One more: the Ship (Ferne Clyffe SP).

So, here is my big idea, hatched during this otherwise magical but waterfall-less hike:

A Portable Bag of Access Blocks, in a bag hooked to the back of my chair, featuring  

Blocks of durable lightweight plastic that might snap together, or have rough edges to minimize sliding.

Snapable flat pieces, like the skinny pieces in Legos.

Like so: RV leveling blocks.

Wedges in a couple of different angles and sizes. Must be able to use to get over entryway stoops.

A lightweight foldable ramp?

Larger rectangle risers, like the rectangle Lego blocks? How much room do I have in me bag anyway? Maybe the risers should be collapsible.

We need these! What are your ideas, reader?

So you wanna see the waterfall, huh?

Where's muh access blocks?

The Parking Placard (Black n') Blues

How I Learned to Stop Worrying and Love the ADA, Which Just Turned 32

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 parking placard: that's for other people. I didn't need nothing. 

I had a thick head. 

Something new, something blue.

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, and I might do it a half dozen times in a day. 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 way. 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 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, I just toppled things into the basket, teetering in the checkout while I fished for money, and dragging my Frankenstein feet out to the parking lot again, cars politely navigating around me - although the occasional Einstein would honk, not that I could turn around to see him, not that I could reach around to flick him off.

Muh sexy ride.

As my legs exhausted themselves, each step became smaller, smaller, until my energy was drained and my limbs locked like jointless boards due to muscle tone. In the middle of the parking lot, I stood stock still, like performance art, like the Tin Woodsman in the days before Dorothy Gale. 

To make things a little easier, the walker had wheels on the front legs so I could shove it along instead of lifting and planting it on every step. But once fatigued, I lost the power to hold the walker in place, and the wheels assumed a more insidious role, creeping forward slowly. As they gained momentum, I thought, No, no, this can't be happening. Unable to lift my feet, my upright posture deteriorated into a wider and wider triangle as the walker rolled further away. As my angle increased, I could hear Carly Simon singing “Anticipation.” I couldn’t let go to break my fall - my hands were locked - so I'd take a deep breath and bail, turning my face as best I could, because I don’t need to be any uglier.

On the way down, I’d think: Don't land on the Chef Boyardee!

This happened once on a frigid winter night, after my friend and I had attended a wake and on the way home, stopped for a nightcap. The 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 had to stop and rest, talking to my patiently shivering friend while we waited for my chilly 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 the direction I was headed.

My buddy circled nervously around me. “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 me to brace me, but honestly, in our leather-soled dress shoes, we might as well have been in ice skates. At this point I think he was 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.

I sometimes imagine what it was like for someone in the warm comfort of their car to watch us gliiiide across that parking lot. Floating, gracefully rotating in space. Maybe the Blue Danube Waltz was playing on their radio, <CUED UP FOR YOUR LISTENING PLEASURE> 

while we skated from one side of their windshield, all the way across to the other side of the windshield. … Faster and faster… Have you watched curling in the winter Olympics?… 

On and on and on… Circling the drain...

What would become of our intrepid boys?

That’s when I started laughing. In uncontrollable circumstances, laughing is often the best thing to do. In Chicago when freezing your body parts off we often laugh it off with our friends. Because it's better to freeze body parts off together and be laughing, then it is to freeze body parts off and not be laughing. And that's the science behind that.

But also, convulsive laughter is useful in defeating spasticity. In an instant, we were a giggling heap of metal and man sprawled on the dark ice. In our slick shoes, we'd be stranded on that parking lot for some 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 bathroom or busy street crosswalk, hopefully with one or more gallant onlookers there to drag me out of danger and stuff me in my car. After I’d rebuff their offers for medical help, I would fall asleep on the front seat, sometimes for over 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 broken capillaries cry out, “Get the blue placard, already!”

Before then, I clung to a strange, outmoded idea of what independence is. But once I crossed that thin blue sign, what I found was a fuller independence of accessible jobs, housing, education and protected rights, accessible medicine and tech and yes, even decent curb cutouts and parking spaces - a whole societal push to involve everyone, to 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.

Baby Got Back

In the last four weeks Mab has backed up and parked our trailer rig (20-foot van + 16-foot trailer) completely by herself five times now. It's really an accomplishment, and a hard-won and incredibly useful skill that she gutted her way through until she learned. If you've never had the pleasure: small trailers jackknife and go off in any old direction they decide, usually the opposite of what the newbie driver is aiming for - just because. 'Backing up' is the number 1 cause of arguments between couples who camp:

Go left.

I am. 

No, my left, the other way. 

Like this? 

No, the other left. 

I am turning left!

Right, left!

I am!

You're going right, right, right. Stop!

Argh! (Cuffs the steering wheel, puts it in Drive to start all over again.)

So it went. Our trailer is stubborn, but here was a case of stubborn versus stubborn, and no one's stubborner than Mab. It took a lot of time but she wore that ornery trailer down. She hung with it and never accepted help: she insisted on doing it herself, no matter how many attempts it took, no matter how many sour faces from other drivers who had to wait a minute. (Truly, most have been completely gracious about it.) She gratefully accepts help in the form of directions, and there is a whole country of helpful ace drivers in campgrounds everywhere. But no matter how impossible the space is (most are reasonable, but there have been a dozen or so complete headaches), she will never hand over the steering wheel. Leggo my Eggo. And now, after almost three years, Mab's got skills! After a few back-and-forths, she's in that space. What a champ. That's what kind of travel partner I've got. She keeps the whole train running. 

Look, Mab: stairs!

RV travel isn't really easy, at least not for us. There's more work than simply checking in and checking out, especially when one person is doing it all. While she is going through the list of tasks for making camp or breaking camp, I am hovering around like a gadfly, a second set of eyes for safety or to see that nothing is forgotten, that windows and latches are in fact closed… all of the little detail things that could come back to bite us. It's not much, but I do catch things. A guy's got to earn his seat on the ship, right? But in spite of that, she loves traveling this way and wants to keep going. We both do. It is seeing the country from an angle we never have before.

Onward. Can't wait to see her skills three years from now.

Pictures: Boulder Campground Carlyle Lake, 801 Lake Rd, Carlyle, IL, (618) 226-3586 – off of I-55, about 50 miles east of St. Louis. This is a Army Corps of Engineers campground. They are required to provide public facilities like campgrounds with their projects, and these are really worth seeking out! We started looking for them about a year ago and every single one has been ship-shape: clean and well-maintained, with ADA sites that have typically spacious, level concrete pads and look pristine. And cheap! With a senior discount, it's often less than $10 a night. The ones we go to are all on lakes or rivers – like, right on the shore, because usually there's plenty of availability. They are the best-kept secret. Find an area you want to visit and then search for a COE campground nearby, either through Google or Recreation.gov.

Boulder Campground site 53 is a good example of what you'll find at COEs: electric, a super-wide concrete pad that in this case required all of our leveling blocks, which is unusual because most COEs are level. But lush greenery all around, without absolute privacy but plenty of space in between campsites, and of course facing the largest man-made lake in Illinois directly behind us, with sailboats gliding in and out all day long. Total cost of $36 for four nights. You have to fill up water at a public spigot on the way in, and there's a dump station on the way out. Verizon and T-Mobile were four bars. (Unfortunately another lovely COE on I-55, Moraine View State Recreation Area in Leroy, IL, did not rate in spite of its awesome accessible trail through a wooded island, because the Verizon signal was 1 bar and unable to sustain an Internet connection and that's a safety issue for us. T-Mobile was 4 bars. But I increasing suspect that the iPhone I just purchased is not a reliable hotspot for us. We never had these problems with my old $20 Android. How disappointing.) 

A first: wheelchair-accessible grill, Moraine View State Rec. Area, Leroy, IL 

One of our closest friends met us at Carlyle Lake for the weekend. This is why we camp.

B****** gave me the Mummy's Curse...

And I died in nasty ways. Perfect ending to 5-star weekend.

Baaling out at Brazos Bend

        In February, we camped at Brazos Bend State Park 21901 Farm to Market Road 762, Needville, TX, 43 miles south of Houston on the Brazos River. Parks like this, so close to a major city, are secret gardens that cast a spell the moment you enter. When I was a kid looking up nasty demons I came across in the Bible - Beelzebub, Ashtarof, Legion, and hoping for a creepy sketching to go with the definition - I found out that the one named Baal wasn't necessarily a devil or evil at all: a baal was a spirit that belonged to a place, like a babbling brook could have a baal living there, or a shadowy ravine might, or maybe there’s a baal in a tree hollow. And when we visit Brazos Bend, or Cedar Hill State Park outside of Dallas, the congestion, noise and fumes of the world fall away as we enter the park and are surrounded by the peaceful magic of fragrant old trees and the hush of green forest. Instantly we’re part of a different world. The baal’s all around us, and the busy little swipe-swipes of our devices have no power here. OK, that’s an exaggeration. There is wi-fi, but it feels a lot less important here. The point of these places is to wrest my head out of its tangled nest of to-do's, reaching-outs and write-me-backs: I'm here to baal out.

        The baal of Brazos Bend lives in humid woods and finger lakes with marshland. The park has a lot of hiking, many trails wheelchair-accessible. The main attraction though is the wildlife, including deer and plenty of waterfowl. (Bobcats too, but they don't want to be seen.) But the stars who really bring people in are the 300 alligators living in the park. There are plenty of pictures of them sunning along the trails – on the trails! – while Houstonians visit on lunch break. So it's not a very secret garden at all. Except the winter weather chased everyone away. Enter two opportunistic Northerners. We bundled up against the gray and wind and went out to find the baal and its alligators.

        (I ran off at the mouth here, so campsite decription & features to come.)

        We got down three trails, all very accessible. The one we made a beeline for was 40 Acre Lake Trail. Why? That’s where the alligators are, of course! The trail was gravel and old asphalt (sometimes bumpy but generally good) and circles a lake with some marsh and waterfowl. We saw a couple of hurons, ibises, and scores of some kind of swallows skimming and circling the water for bugs. The cold winds whipped across the lake. What, are we in Chicago over here? There were no alligators at all. Mab the Stair Freak even checked from the top of a three-story observation tower, brrrrr. Nope, no sign of alligulators.

        Clearfield Lake Trail is the paved ADA trail that crosses a lake with plenty of large waterfowl that let us come up close. Those trails were for us, and for the birds.

        A short stretch of Clearfield Lake Trail is wooded before it crosses the water. Look at all of the bird****, Mab said, and she's not a big swearer but that's how much there was. It coated the floor of the woods like whitewash. I don't remember the trail itself being too gross. But I did look up.

        "Look," I said. "In the tree." Hunched on a branch 30 feet above was the dark outline of a vulture looking down at us. He was a bad boy, all right. Correction, bad boys. "Look at all of 'em!" It was an arching branch and on it perched a line of silent, menacing vultures framed against the gray sky. They were all checking us out.

They're up there... licking their chops.

        But not only them: they were also in the next tree, and the one after that. And the one below that, and the ones on the other side of the trail. Everywhere we turned were staring vultures. On, on we went, but as we fled one treeful of vultures, another was there stalking us. Impassive, eerie. Once in a while a wind would ruffle a feather, but no reaction. How ominous, how unnerving. Were they looking at me like a Thanksgiving turkey on wheels? I could hear Vincent Price snickering, laughing in the background, and the suspenceful music building, getting louder (in my head). It was impossible to know what these hideous creatures were thinking, but they were not happy. Their car's extended warranty had run out. Something.

        There were hundreds of them around that lake. It was a convention of vultures - really, I looked it up, and a group of vultures is called a convention of vultures. Not a fun convention either, but I loved it. 

        Actually I saw a lot of these kids flying around when we entered the park and were looking for our campground. Bunches of them swirling around, more than I'd ever seen. It was a kettle of vultures swirling round, because flying vultures are a kettle (I'm into this!), and hunkered-down, sitting vultures are a convention. Got it?

        Maybe they'd been sizing me up the whole time. Then, there'd be a wake of vultures (I'm not kidding you. Look it up.), which is what they're called when gathered around, feeding. How about a banquet? Or a buffet?

        We visited the nature center nearby, with natural history and some rescued baby gators in the tanks, soon to be reintroduced to the wild. A ranger told us they didn't know why there are more vultures in the park this year, but she thinks there's more on the way. I knew: the baal. There was no other explanation for some many those large birds just loitering. What was there that is so good? What are they eating? We saw some picking at the ground for bugs or worms or whatnot, but those would seem to be appetizers to birds of this size. They are large. We came upon a dozen of them sitting on the wooden rails of a short pier/overlook, and I crept up on them slowly so that as they flew away one by one, Mab filmed from right behind me. When they launched, their strong wings beat the air like beating a rug: thump, thump, thump. The ranger also said that the alligators were submerged in the warmer water and one. Fine, we didn't need them.

 Analemmatic sundial outside nature center looks like sundial + the game Twister

Also the George Observatory on-site, open weekends

        We had time for one more spin, and that was the Whiteoak Trail. It was late afternoon, getting colder and darker. Some staff had to be heading home by then. We wanted to trail along the Brazos River for a while. Whiteoak is a bike trail, and again we had it to ourselves. It was gravel and earth and crossed through a half mile of silent, baaly forest (thick clusters of yaupon hollies, and here and there a gigantic, gnarled oak standing like a monument). Outside, gray winds. Inside, green and quiet. The trail brought us to the banks of the Brazos, wide and red with clay.

Wild yaupon

        I cranked up the speed setting on my wheelchair to make as much ground as possible before turning back. But in only a few seconds it was obvious I was moving no faster. I asked Mab shield my control display with her hand. My power was down to one bar out of 10! (Glare had obscured the display all day, zoinks.) We turned back immediately, but it was getting darker and darker and the chair getting slower and slower. In our minds we were both rehearsing what to do when I was stranded out there. 

Things are about to get real.

        But, lawdamercy, we limped back and our van Moby Dick came into view. The chair barely climbed up onto the pavement, and it died right in front of lift - Mab had to push me onto it. If we had hiked even 10 feet further, things would have been a mess. But it was completely exhilarating, dodging that bullet. We laughed like maniacs as we warmed up in the van.

        Mr. Baal, you got a good park.

Helping Others, Helping Themselves: Saluting MS Volunteers, Three Stories

        When we're diagnosed with multiple sclerosis, does a sign appear on our foreheads, saying, 'Now Soliciting Medical Advice'?

        "When people would see me on the scooter," said Colleen Voith, who has remitting-relapsing MS in Chicago, "they would say things like, 'I know a lot of people who have MS and walk just fine,' or 'Are you getting enough exercise and taking the right medications?' I would get so angry.

        "I think people need to be more educated about MS and how no two people are alike."

        Since she was diagnosed 27 years ago, Colleen and her husband Dan raised a family of four and now have two grandchildren. She's also gone from cane to walker to scooter, and had to give up driving and working. But she got a phone call with an unusual request, one that led her down a new road in life through volunteering, joining thousands of others with MS who give their time and efforts to help others. With so many of their own challenges, why do they do so? This National Volunteer Week is a good time to hear a few of their stories and the values that drive them. Opportunities for volunteering can be big or small.

        The call to Colleen was from her niece, studying physical therapy at Northwestern University. She asked a question you don't hear every day: would you be interested in coming to my class and answering questions about MS from my teacher and fellow students?

        Hm, what do you say to that: complete strangers staring at you and asking you questions about... who knows what they'll ask? But sometimes a mischievous dimple winks from Colleen's cheek. Sure, she said, I'll do it.

         "I loved doing student labs," she says. "The students are brilliant and said hands-on with a neuro patient helped them better understand how physical therapy helps with MS." 

        They all liked the experience so much that she appeared the next three years as well, the last time remotely (with Dan's tech help). It was fulfilling, and surprising how fun – but kind of not. Because Colleen was also volunteering in another role. 

        The local hospital was knocking down its aquatics center, relied on by Colleen and many others for MS Aquatics and water fitness. "This became my exercise and support group," she says. She helped organized a protest campaign (Saved OPHFC on Facebook), and they won and saved 100 jobs! The renamed Orland Park Health and Fitness Center remains open, and pending Covid, will offer MS Aquatics and MS Yoga.

Don't rile up the red scooter mom: Colleen Voith in action

        "It was so fun. I love to volunteer. It makes me feel good to help others, especially those newly diagnosed," she says. "The best therapy for me was fundraising and volunteering for various events."

        Another event Colleen took part in was Skydiving for MS in Rochelle, Illinois, when she jumped out of an airplane (twice, because Colleen) along with Dan and some 20 other family and friends over the years, codename: "Colleen's Commandos." But just as important, she started lending a hand to the volunteers organizing the event, Cecile and Dave Perez, who had grown it from a one-person fundraiser to a yearly occasion that drew people from across the country. During the year, Colleen helped Cecile raise donations and raffle-items from local businesses.

        "It was the best time ever! I really can't see going back," Colleen says, but the dimple gives her away, "but you never know."

        Cecile has RRMS and jumped twice. She was also the co-chair and chief enabler, the Mama Bear of the event, working year-round to stage the epic fundraising raffles (and catered meals) in the evenings. MS fatigues you, but on event day she worked through afternoon heat and anything else that might pop up to make the event happen and the skydivers (with and without) MS jumping. With characteristic humility she calls the event "a collaborative effort."

        "I had so much fun and help from my family and Colleen with prizes," she says. "The volunteers that day were the backbone of the event and made the event special." Skydiving for MS raised over $250,000 for the National Multiple Sclerosis Society.

        Cecile also volunteers in the MS Society's Peer Visitor Program, keeping contact with people with MS living in nursing homes. Once a month she visits participants who may be dealing with isolation and loneliness. Simply listening and supporting each other over time builds friendships, each looking forward to seeing the other. 

        "We are in this together," Cecile says, "and helping someone with MS, we are helping ourselves."

        Since the pandemic closed many of the facilities to visitors, the volunteers have taken to sending encouraging cards. "To let individuals know they are not alone, that we miss them," she says, "and to put a smile on their face. Better times are coming." It is a workaround that allows volunteering from home.

Awards night: Dave and Cecile Perez, Dan and Colleen Voith

        In 2016, Colleen, Cecile and Dave Perez won the NMSS Greater Illinois Chapter's Volunteer of the Year Award.

        On a different coast and a different part of the MS journey is Pam Swint, a married mother of two in Redwood City, California, who in February 2020, had two shoes drop at once: imagine learning you have primary-progressive MS at the same time that the world is shutting down for the worst pandemic in a century. Thankfully, her sense-of-humor-as-coping-skill remained open for business. 

        "Everyone masking up right as I became immune-compromised with Ocrevus?" she says. "Awesome."

Taking a stand: Pam Swint

        During lockdown, she took advantage of MS Friends, and was able to sort through some of her own issues by talking to volunteers with MS. She liked the experience so well, she wanted to try volunteering herself. Doing so from home made it more accessible.

        "I'm the Mayor of Muscle Fatigue," she says. "I visualize that I have a little vial of energy for the day. I use it up pretty quickly, and it takes a long time to recharge." 

        Now she's a moderator for an MS Society Facebook forum, and so far the shoe fits fine. 

        "Volunteering has been huge for my mental well-being. Being part of a team, interacting with a consistent group, and problem-solving are all wonderful ways to not only distract myself from this disease, but also learn more about available resources." Pam considers the other volunteers her support group. "They tend to [be] proactive and supportive people.

        It's helped give her the energy and desire to do in-person volunteering with Bike MS and Sail MS, putting together a crew of MSers to sail the San Francisco Bay and down to Mexico.

        Thanks to all MS volunteers, with the disease and without, whose efforts of all sizes are step-by-step making this a better world. 

        To volunteer: https://www.nationalmssociety.org/Get-Involved/Volunteer

        Find your local Walk MS, link shortcut: https://tinyurl.com/2byzpw4y

        For the #SavePHFC campaign, go to Saved OPHFC on Facebook and scroll down a couple years. Fun David vs. Goliath stuff.

        SailMS: https://sailms.org/

Frida Kahlo, Disability Artist

        Here's one from my queue that somehow never got posted. It's always a good day for an art post, and color during the endless sludge of winter, and Frida Kahlo...

        "I paint self-portraits because I am alone so often... I am the person I know the best."

At the Frida Kahlo: Timeless exhibit that closed last week at College of DuPage's McAninch Arts Center in Glen Ellyn, Illinois, what gripped me as much as her artwork, 26 paintings, was how profoundly her life and art were shaped by disability. I knew from the biopic with Selma Hayek that she led a life of physical pain, but had l no idea she was bedbound so often and so long that she created a lot of her great art there. The exhibit even placed a replica of her bed right in the exhibit!

At age 6, Kahlo contracted polio that left one leg shorter than the other. At 18 she survived the crash of a bus with a streetcar that killed several passengers. Kahlo was pierced by a metal handrail that fractured her pelvis and punctured her abdomen and uterus. Her spine was broken in three places, her right leg in 11, her collarbone was broken and her shoulder dislocated. That fateful moment dealt her a lifetime of agony, isolation and miscarriages, but also tempered her artistic vision and the resolve to realize it no matter what.

At times she saw herself and others in an almost disembodied way. She created surrealist paintings that looked like medical charts of her miscarriages, vehicular accidents, and the metal rods that propped up her back and caused chronic pain. She turned that same almost clinical eye on her portrait subjects and on the way women are treated. One of the paintings shows the brutality a woman from the headlines had suffered at the hands of a murdering man, and Kahlo pulled no punches on the details, making sure viewers got an eyeful of how many women are treated. But on the other hand, her eye could capture the lace as fine as dewdrops on the sleeve of an otherwise poor and plain-looking young girl whom she painted, signaling the beauty she saw inside of her young friend.

The exhibit highlighted the disability theme throughout the exhibit, and amplified the message by mounting a side gallery of works by Tres Fridas, a collective of artists Reveca Torres, Mariam Paré and Tara Ahern. Tres Fridas (the name is a nod to Kahlo's painting, Dos Fridas) stage disability-related recreations of famous paintings. The nameplates of their works show the original artworks to compare with, as well as explain issues that people with disabilities are dealing with today. Kudos to the McAninch Center for taking this opportunity to underline important issues that the general public gets little exposure to.

Kahlo embraced her own disability as an intrinsic part of her whole self. She wore support braces around her torso, three of which were re-created for the exhibit. One was of burnished leather that resembled a hunting vest or leather armor. Another was moulded plaster, decorated with exotic painted flowers and designs. Another way that disability was manifest in her art was in her subjects, especially herself. As a young woman (she died at 47), her energies and mind engaged with the wider world, yet for much of life her body would not let her. She and her famous and influential husband, the painter and muralist Diego Rivera, reveled in the company of artists and thinkers in Mexico and worldwide. One item in the exhibit is a short film showing her and Riviera with the historic revolutionary Leon Trotsky after he came to Mexico in exile from Russia. (Soviet Premier Joseph Stalin would send an assassin to kill him shortly afterward.) All this, and still Kahlo led much of her life in her bedroom, alone.

And yet, even forced to lie on her back, she created art. To create requires willpower even for someone able-bodied. That she continued to do so through pain and depression is a testament to her power as a person and artist. As I deal with similar issues, she amazes me.

Of course Frida Kahlo is not only a disability artist. She was also painter, provocateur, fashionista and proud mexicana (in the Mexican Revolution of 1910, Mexico threw off the yoke of dictatorship, and society of Kahlo's day embraced and celebrated its native culture and history): all of these things made up Frida Kahlo as a person and as a life, and she incorporated it all into her art and expression. Even her disability and isolation were not overlooked or kept hidden: they were turned into a source of power that made her work unique, that is, uniquely Frida Kahlo. (Until recently, disability and depression were forbidden subjects. Now think about the taboos back in Kahlo's time!) Things like these seem like common sense, and yet we (me) sometimes have to learn basic truths like this, and it can take a great artist and museum to help us understand.

Viva Frida Kahlo!

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!"