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.

Three Years Out!

Until that time, we were stuck. Stuck in place, because of my worsening multiple sclerosis. I rely on a Hoyer patient lift that most hotels do not accommodate. (It's a long story and another blog I'll definitely write.) Without reliable places to stay, we stopped even trying to travel.

But we had an idea, and when my wife retired we rolled the dice: We drove across the country to Mesa, Arizona, where we had purchased an accessible RV - over the internet. On that blazing summertime trek, we slept on the floor of our cargo van, convinced that good things lay ahead. There were some crazy, even dangerous, detours along the way, but I'm cutting to the chase here. When at last we arrived and took delivery of the RV, one challenge still remained: whether or not we could actually use it. We knew that the inside of the toy-hauler trailer had an accessible floorplan, but my way in and out would be by going up and down the ramp in back, something I had never actually done. If you don't know what a toy hauler is, it is a trailer to haul smaller vehicles inside, and the rear wall flips completely down into a ramp. A rather steep ramp, but I could do it, theoretically. Now I'd be putting our theory to the test in 107-degree Arizona heat!

Thankfully I passed the test. Even with my head swimming in delirium and my multiple scleroses bubbling inside my skull like a popcorn, I still made it safely to the ground. But no time to celebrate, we had to boogie! We had reservations for the night at our very first campground a couple of hours north of there, at Grand Canyon National Park. After some basic how-to instructions from the dealer, we left and kept our eyes peeled for a large hole in the ground. 

We rolled into the park just before nightfall. That first night was spectacular. We saw the Big Dipper, a shooting star and a satellite passing overhead. Grand Canyon is about the biggest debut a little camper can make, in my book, and knowing the legendary Canyon was out there so nearby in the darkness was a total rush, a childish night-before-Christmas type of excitement. I got my wheelchair stuck in gravel that evening and got a push from a young man from Holland – absolutely a National Parks experience. This camping was OK!

Arches NP.

The wonders did not stop. From there we went to the Arches National Park. Then Mab drove through the Rockies on Interstate 40. Not only were the views stunning to a couple of flatlanders, but she met the challenge of towing through the mountains like a champ. She hardcore. But the highlight of the trip was still to come, seeing my cousin Tina. Growing up we were close, but life goes on and we went apart during our adult lives. In that time she had successfully battled cancer, and we were so excited that she and her wife and son, along with my aunt and uncle (my godparents) came to visit us early one morning at a campground before they all went to work. It was a brief visit but so sweet and touching. It was the last and best part of our exhilarating trip back into the world of travel.

It was about a year later when the cancer came back. That brief, giddy visit, a hurried reunion filled with outsized smiles and enough excited chatter to fill a whole summer's day, turned out to be the last time Tina and I got to see one another. What a gift, and what a great lesson to keep pushing outdoors and keep moving and enjoying the country and its people.

That was three years ago today. There was more to that adventure, some chills and spills to write about later. We were crazy to do it, but we're so glad we did. At times the camper is a whole other set of worries but it's very rewarding. I remember once reading the summary of a medical study pinned on a bulletin board in my first neurologist's office, and seeing the phrase, "Absence of mobility equals morbidity." Stay still for too long and you'll deteriorate, you begin to die. The paper was talking about moving and staying active, but in a similar sense this is where Mab and I are in our lives. The time is right now. The camper, three years ago, was our Declaration of Independence. Now we're leaning into it and pushing hard:

        19 trips, 36 mos., 19 states, 20,170mi.

Here's to the next three years. Look out, we're coming to your town.

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.

Stax to the Max: another must-see in Memphis

Stax Museum of American Soul Music

926 E. McLemore Ave., Memphis, TN, 901-261-6338. Tues-Sun 10-5.

You're walking in Memphis. You're a music fan, so we know where you're heading. The gravitational pull is too strong, and soon you're looking out over that low stone fence at Graceland. That entire wall was lined with people when he died that summer of 1977, right when Punk was really ramping up. Coincidence? I dunno. But it costs $77 to cross that fence, which sometimes is no big deal and other times, man, it's 77 bucks. Especially when we all know he's not really buried there but is running around in South Africa somewhere with Jim Morrison. But if you're light on cash and you still want to commune with the spirit of Elvis, you could go to Sun Studios or Beale Street where the cat hung out -- and you definitely don't want to miss the Stax Museum. 

The Stax Museum is a blast. If you're into blues, R&B, soul, early rock, any rock, this place will surprise and excite you. We knew that it would, but it was even better than expected. I urge you to see it and the Delta Blues Museum in Clarksdale, Mississippi both (not on the same day: they're 75 miles apart) because they go together like two arms of a shirt, but we'll get back to that later. 

Stax was one of the classic, groundbreaking record labels of the first few decades of rock, roll and soul. The museum stands on the site of the old studio and pays tribute to what and who made that place legendary. What kind of music? A hit factory of records from the likes of Sam and Dave, Albert King, Otis Redding, Isaac Hayes, the Staple Singers, Ike and Tina Turner, Booker T. & the MGs (an interracial instrumental quartet that also served as the company’s rhythm section and house band): sweaty, shakin', good-time music. Open a new tab and play this while you read on.

Your tour starts with a fantastic little documentary on what Stax was all about: a harder-edged R&B that came before Motown, a place that integrated musicians and audiences both, and the magic combo of the blues, gospel and country that swirled around together in this rivertown that inspired singers like young Elvis Presley and the other legends that recorded at Sun Studios. The film is a powerful 10-15 minutes that put us already in a great mood and psyched to see what's next. And it opens directly into a small recreation of an old bleachboard southern church. The effect is powerful: it drives home the message of the film. This place is so well-designed! Now we're ready for anything Stax wants to lay on us.

What follows is a good-sized museum with plenty of rhythm and also enough learning to throw you into Info Overload. We are the geeks who stop to read every panel we come to, but after 2-3 hours our brains shut down. At Stax, you reach IO but with all kinds of lively features and variety thrown in. It's an Easter basket of GitDown! What'll you find in the basket? A working studio room in place of the old one that burned down, producing cool acts like Nathaniel Rateliff and the Night Sweats. Isaac Hayes' Oscar and mondo gold-trimmed Cadillac that's even badder than his chandelier Caddy in Escape from New York. (Shut yo mouth!) The Soul Train room, a re-creation of that famous dance floor. Seriously, this joint rocks! This is the only museum we've ever been where I'm watching Mab dancing while she's reading factual info. Because the soundtrack's powerful! She got that swivel in her hips, yes. Maybe they ought to pipe in some infectious Stax rhythms while the little ones are learning times tables and such. 3×3 equals shake your tail feather!

24 carat, fyi

As far as accessibility, it's all one level with plenty of space, so no problem. The displays and placards are as clear to someone in a chair as to someone standing except in one regard. On a few display cases, like Tina and Ike Turner's, the overhead light glare from behind made things difficult to see from chair height despite my moving around. A detail I'm only remembering now because Stax was such a full visit.

Like a great museum will, Stax alters your understanding and perception. Combined with our experience seeing the Delta Blues Museum in Clarksdale, we come away with a better appreciation of Memphis as a melting pot of musics. On a larger scale, the Mississippi River was a superhighway for commerce and also the Great Migration of African-Americans from the South to the cities of the North, including the music and culture they brought along with them that started important scenes in Memphis, St. Louis, Detroit and Chicago, among others. In fact, Art Bell, marketing director for Stax, is quoted on a placard as regarding Chicago as his market target for breakout or crossover hits. In segregated times, Stax had a harder time getting traction in Eastern markets (New York) and Western (Los Angeles). But if a record broke big in Chicago, then those other large markets grew more receptive. And Chicago was indeed receptive to Stax, because Chicago was part of the same ecosystem of music that traveled along the Mississippi, which came from Delta.

In this way, Bell said, Chicago was a suburb of Mississippi.

        Like the send-off of Soul Train used to go, Love, Peace, and Sooouuuul!

        [Where were we staying? Tom Sawyer RV Park, West Memphis, Arkansas. Wait'll you see this place...]

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/