Sunday, October 16, 2022

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://

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.

Wednesday, October 5, 2022

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?

Sunday, September 18, 2022

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:

Monday, September 5, 2022

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?

Saturday, August 13, 2022

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.

Monday, August 8, 2022

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.

Monday, July 25, 2022

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

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.