Mondays with Mike: The kindness of strangers

Every time we visit our son Gus in his little yellow house in the quiet little town of Watertown, Wis., we love seeing him. And we are always, just a little, discombobulated. Even after 12 years of his living away from us.

Gus and Beth.

Gus and Beth.

Gus is severely disabled. He can’t talk. He can walk a short distance, clumsily, using a walker, but he spends more time in his wheelchair—which he can propel and steer well enough to get around the little ranch home he shares with three other developmentally disabled guys, and with the staff of Bethesda Lutheran Communities, which operates the home.

He invariably recognizes us, letting us know by letting out a sort of shriek of joy, just as he claps his hands right in front of his face. He makes Gus noises—anyone who’s been around him knows what that means. For those who haven’t, I don’t think I can describe them adequately. But they tell you a lot—whether he’s happy, sad, puzzled, anxious.

Saturday—when we visited to celebrate (in advance of his 28th birthday on September 3)—he was especially pleased to see us. The shrieks and claps and laughs went on pretty much all afternoon.

We walked him in his wheelchair to the little park across the street. We wheeled up to a picnic table, where Beth reclined to catch some rays. Some kids were there—and it was a scene that I remember well from my youth but which I rarely see today. They were anywhere from, o,h 5 to 11 years old. They were playing kickball on the baseball diamond, while their bikes sat parked near the pavilion.

Beth caught a few rays on Saturday.

Beth caught a few rays on Saturday.

There were arguments about in-bounds and out-of-bounds, cries of joy when some one kicked a good one. And then they broke up and reconvened to start a new game of dodgeball of sorts on the playground. It was a game that an outsider could only partly understand, but they clearly had crafted and memorized their own rules.

What really stood out about the whole scene: There was not an adult in sight. The kids had organized this themselves. It was straight out of our childhoods. During summer vacation, we’d leave early and come back late. Entertaining ourselves with invented games, getting bored, inventing new ones. It all was kind of quietly astounding, a dreamy escape to the past.

Gus enjoyed it all, too. He can tell when people are having fun, and he gets tickled by that.

While we sat and took in the breeze and the sun, a little guy—the one I reckon to be 5—came by to pet Whitney, who was off harness. He told us about his dog. Pointing to Gus, he asked whether “that guy broke his knee.” After some back and forth, we surmised that his grandma had “broke her” knee and had been in a wheelchair, hence the question.

We eventually said goodbye and walked Gus back home. We said our goodbyes. It was a good visit.

When he first moved away, we’d stay longer, and usually stay overnight. Things changed when we realized: He’s happy to see us, but really, he’s got his own life now. Not like our contemporary’s kids—who are going off to college, starting careers and such. But it’s his life nonetheless. He’s happy to see us, we’re happy to see him. It’s our normal.

Always, I wish we lived closer than the 2-1/2 hour drive we have, so we could just drop by when we felt like it.

But always, I leave grateful that he has a home. That he’s done just fine out of our house. There have been glitches, sure, but there were glitches when he lived with us. We didn’t get everything right.

There was a time when I thought I could never let him live elsewhere. To trust him to the world. That’s what all parents have to do. In that way, Beth and I are like all parents who watch their kids leave. Except we’re not. Of course we’re not.

Years ago Beth, in her infinite wisdom, arranged for me to talk to another father who’d thought the same way about his son as I did—no one can take care of Gus like we can. Like I can. And this father ended up hitting an inevitable wall.

That helped me see ahead, and realize, I needed to learn to trust Gus to the world. For me, for Beth, and for him. So far the world’s doing a good job.

Watermeelo!

When I assigned “The Best Job I Ever Had” as a topic for the memoir classes I lead, two writers in one class came back with essays about jobs they had when they were 11 years old. Last week’s post featured excerpts from Hugh’s essay about putting paper Trains together in 1942, and today I’m sharing excerpts from the piece his fellow writer Bob Eisenberg wrote about another unusual job during that decade.

Bob Eisenberg is not only a good writer, he's a great artist, too.

Bob Eisenberg is not only a good writer, he’s a great artist, too.

Bob starts his essay explaining that when he was eleven, his family rented an apartment right across the hall from a man who had his own business pedaling fruit and junk items from a horse and wagon. One morning at the end of the school year, their neighbor stopped Bob to say He needed a helping hand on his wagon. “He asked if I new anyone who wanted a job,” Bob wrote. . “I jumped at the chance – I pointed to myself and said ‘Me!’” From Bob’s essay:

The start of my work day was my favorite part. I’d get the big brown work horse out of his stall and guide him into the alley. Then I’D pull out the empty wooden wagon and attach the long wooden wagon poles to the horse. I’d sit in the driver’s seat THEN AND WAIT for Mr. Dunn.

First stop? South Water Market. “Our journey started with me holding the reins and driving, Mr. Dunn sitting RIGHT THERE next to me guiding me all the way,” Bob wrote, explaining that Mr. Dunn took over the reins once they arrived at the market. “He guided the horse into the stall so we could load our watermelons properly.”

Once the watermelons were loaded and paid for, they headed back to their “Little Italy” neighborhood, just south and west of downtown Chicago. Again, from Bob’s essay:

Mr. Dunn drove the horse and wagon through the alleys WHILE I stood up in the back of the wagon, cupped my hands around my mouth and yelled, “WATAMEELO!” People ran down stairs from their back porches to buy our watermelons. We talked and laughed with everybody and shared news of the day as we heard it from people along the way.

Bob worked with Mr. Dunn all summer and earned 20 cents for each watermelon sold.  “Buy the end of the day, I felt like I was wealthy.” When summer turned to fall, they turned to buying instead of selling. “I stood in the back of the wagon and yelled, “RAGSALION!” which meant rags and old iron,” he wrote. “People came running down from their porches with old cloths, old pots and pans and all sorts of junk they wanted to get rid of.” “Everything Bob and Mr. Dunn collected was taken to the junk yard and sold. “At the end of the day I was exhausted, but very happy,” bob wrote. “My first job gave me the feeling of self worth and independence at a very young age.”

Mondays with Mike: Bucket Lists

I think we might be at the tail end of the viral Ice Bucket Challenge thing. (BTW, in earlier days, we had another word for viral: fad.)

I confess to being conflicted about the whole thing. There’s certainly a lot of positives about it. To start, one thing that is absolutely unequivocally good: The ALS Association has $40+ million to steer toward ALS research. Here’s hoping that means we find a treatment and/or cure all the sooner for that horrible disease. And here’s to the hope it might provide those who live with the disease.

Another positive: From the looks of things, a lot of folks taking the challenge were young people, and I’m guessing that for many, it was their first charitable contribution. But not the last. That’s a good thing, too.

On the other hand, just in terms of modern culture, in my book the only thing worse than a selfie is a video selfie. At a certain level, it’s all simply come to annoy me the same way that other social media fads have —Gangnam Style, cat videos, you name it.

And as someone who lives with a person who lives with a chronic disease, something has felt a little unseemly about the circus surrounding the Bucket Challenge. I feel like a killjoy for saying it, but it does make me uncomfortable, whether or not it should.

I checked in with a good friend whose mother died from ALS—wondering what he thought about it all. He wrote that it made him a little grouchy, but that overall he was glad that the ALS Association would have more funds. This friend—who has worked at a non-profit as a fundraiser—also feared for all the poor fundraising staff at nonprofits who would be told by their bosses, “We gotta get our own Bucket Challenge, stat!”

I asked Beth whether she would wish for a similar kind of phenomenon around fundraising for juvenile diabetes, one that would fill the coffers of the Juvenile Diabetes Research Foundation. She, too was conflicted. We’d just heard about a possible breakthrough for type 1 diabetics based on stem cell research. She wondered out loud whether research—diabetes, ALS, and other areas—would advance faster if those cells were more readily available. And whether the hoopla distracts from such issues. She also thought that she might in fact be resentful of people having short-lived fun around the whole thing without understanding what the disease meant to people who live with it.

Finally, there’s the sort of arbitrariness of it—that is, in terms of proportional allotment of resources toward research—does it make sense? Here’s a good article that examines that question, and another on federal funding of research.

It was all making me very cranky last week. And then I found a remedy in, of all places, a Facebook post by our friend Kevin Goldstein (Beth’s written about Kevin before here–he’s an exec in the Houston Astros’ front office.) Kevin was nominated by one of the Astros’ Spanish language broadcasters to do the Ice Bucket Challenge, and here was his response:

I’m not going to dump ice water on my head, but I don’t want to be a jerk about it. I’ve enjoyed watching people participate in the challenge, but I’ve always personally decided to give to charities that have trouble getting big media coverage or gaining 100% acceptance. They’re the ones with real struggles for me, and the ones I feel most strongly about and the ones I will continue to give to. I’m glad ALS has found a successful campaign to greatly increase donations to the cause, but it’s not for me.

Still charity is a good thing, and because Joey got wet, and because Joey called me out in Spanish, I will donate $100 to Planned Parenthood Global, who is working overseas to ensure that women, men, and young people in some of the world’s most neglected areas have access to the health care they need to control their bodies and their futures.

In the end, I guess I’d say I hope that folks will donate, consistently and carefully. That they use tools like Guidestar and Charity Navigator to be sure their donations are used appropriately and efficiently (the ALS Society measures up very well by both these organization’s measures, btw).

So who am I to argue with 10s of millions going to a good cause? More power to you ALS Society. And thanks for the prod—like Kevin, I’m not doing the bucket thing, but you have prompted us to up our contribution to JDRF and the other orgs we have on our short list each year.

Here’s why Lionel went back to conventional trains in 1945

When I assigned “The Best Job I Ever Had” as a topic for the writers in my memoir classes, Hugh went home and started making a list. “I wrote down every place I’d ever worked,” he said. “This one kept coming up on top.”

His essay opens in the summer of 1943. Hugh was 11 years old, American soldiers were fighting in World War II, and everyone here at home was rationing. “Metal was necessary to use in making all kinds of military equipment,” he wrote, describing scrap metal drives, manufacturers of pots and pans switching to making mess kits for soldiers, Boy Scouts collecting tin cans that would eventually be turned into airplanes.

An assembled cardboard Lionel train car (and action figure).

An assembled cardboard Lionel train car (and action figure).

Less important businesses like toy manufacturers had to stop using metal altogether, and Hugh said it hit the Lionel Train company hard. ”They knew they wouldn’t be able to sell any new electric trains to run around the Christmas Trees.” What to do? Execs at Lionel put their heads together and hired a novelty designer who came up with the answer: paper trains. From Hugh’s essay:

My mother worked for a market research firm that was hired to test whether the paper trains were easy enough to assemble and to produce enough samples to show to the retail stores. Mom, in turn, enlisted my 14-year-old brother and some of his friends to assemble a bunch of paper trains. Needless to say, although I was only 11, I tagged along and got hired, too.

Hugh describes the flat 11×15 lightweight cardboard sheets he and his buddies worked with: each sheet had train parts printed in authentic colors, and Lionel’s insignia was on every page. “The kit included an engine, a tender, a boxcar, a gondola car and a caboose,” Hugh said, stopping to take a breath before continuing to read his essay out loud in class. “It also had a crossing gate, a crossing signal and enough paper ties and rails to make a good sized circle.” The wheels were laminated cardboard, too, but the axles were little rods made of wood. “It took us many tries to be able to assemble the cars and the track, but eventually we became pretty good.”

It was difficult to find any information online about these 1943 paper trains, and I might have started worrying about Hugh if I hadn’t found a Lionel Wartime Freight Train page on Wikipedia. The Wikipedia page confirmed Hugh’s story and reported that paper trains did well financially in 1943. After buying a paper train for their children, though, most parents became so frustrated by the assembly process that they gave up on putting it together and threw it out.

Hugh and his buddies got paid for testing the paper trains ahead of time, but he couldn’t remember how much they earned for their work. “It must have been by the hour,” he wrote, realizing now that if it was by the piece, they wrecked so many that they never would have made anything.

”It was really fun being with our friends and playing at putting these things together,” Hugh wrote. “And I got paid!” The all-paper product train sold for a dollar during the 1943 Christmas season, but it went off the market after that due to poor customer response. Seventy years (and many, many jobs) later, however, Hugh maintains that getting paid to put those paper trains together “is still The Best Job I Ever Had.”

Mondays with Mike: I saw a man, he danced with his wife

I have a deep-seated desire, a need even, to try to keep up with current events. And lately, I’ve been thinking that’s gonna kill me. Between bankrupt domestic and local politics, and conflicts here and around the world that continually point out the human genius in finding ways to terrorize, brutalize, and diminish other humans, it can overload anyone trying to make sense of it all.

The scene at Chicago Summer Dance last Friday night.

The scene at Chicago Summer Dance last Friday night.

I find myself needing more than an escape—I need evidence that people are—or at least can be—good. Luckily, here in Printers Row in the summer time pretty much any weekend, Beth and I can find joyful evidence of goodness at Chicago Summer Dance.

It’s just a three-block walk from our building to the Spirit of music Garden on the western edge of Grant Park. For the last 18 years, the City of Chicago’s Summer Dance program has presented an hour-long dance lesson, followed by a live performance by some terrific swing bands, salsa bands, and DJs. It happens all summer long, Fridays, Saturdays, and Sundays.

This summer’s weather has been as gentle and mild as the past winter was wretched. That’s how it was this past Friday evening—warm, not hot; breezy, not humid. At dusk, with Chicago’s skyscrapers shining in soft sunshine framing the scene, at least a hundred folks lined up for a swing dance lesson.

The dance floor was expanded awhile back—but it was still crowded. The instructors knew what they were doing, though, and somehow the hour flew by. The Fat Babies played on Friday—they are a superb traditional jazz/swing septet that’s earned some justified acclaim of late. We’d seen them at their regular gig on a rainy night at a Pilsen club called Honky Tonk Barbecue—Beth’s trombone-playing brother Doug sat in for a bit the night we saw them.

On Friday, as always, lots of people came out just to hear the music–they bring lawn chairs and little picnics and ring the dance floor. And everyone was in good spirits and behaved like, well, civilized people.

The band was terrific.

But the dance floor is always the best. Short dumpy men whose footwork belies their physiques dance with statuesque women. Young couples who take their dance seriously and dress the part. Young black men dancing with women who look like my middle-aged mother. Blue hairs and kids, black people, white people, Asian people and Hispanic people, drag queens, guys that wear yacht-captain hats. Women in flowing dresses and impossible heels.

All partnering with one another, the only condition being you have to want to dance. It’s a liquid tableau of color and people.

And every time I leave, I’m reminded: It’s not all bad.

All dogs allowed

So many dog lovers who see me out and about with Whitney stop, sigh, and say, “I wish I could bring my dog with me to the store.” This month, if you live anywhere near Chicago, you finally can!

My longtime friend Jenny Foucre Fischer works at The Bookstore in Glen Ellyn, Ill, The store is celebrating the dog days of summer this month — not only are they encouraging customers to bring their “furry, feathery and scaly friends” along when they come to shop for books, but they’ll give you a reward if you do. Don’t believe me? Here’s a quote from their August newsletter: “Stop by with your pet and meet us in person, — or show us a photo of your favorite animal companion (real, stuffed or imaginary) — and you’ll receive 10% off an animal-related book in August. What can I say? The Bookstore is a rare breed, ahem, and this story about them in the Chicago Tribune explains why:

The store is one of about 50 independent retail booksellers in the Chicago area. Not too long ago, all of them and the other roughly 4,000 independents across the U.S. were supposed to vaporize. By some estimates, more than 2,000 did.

But about 1,500 survived. And as the Tribune story says, “through a mix of obsessive attention to detail, lean inventory, an embrace of technology and resourceful salesmanship, they hang in there.”

The Bookstore has been extremely supportive of my books over the years, and of course Hanni and Beth: Safe & Sound is one of the books you can purchase with your discount when you bring your companion animal with you to shop there this month.</

That's Jenny with Hanni and me a few years ago at The Bookstore in Glen Ellyn.

“That’s Jenny with Hanni and me a few years ago at The Bookstore in Glen Ellyn.”

And wait. There’s more! Email The Bookstore at justbook475@yahoo.com to share a photo of yourself or someone in your family reading to your pets, and if you give them permission to use the photo on their website & social media pages, they’ll give you an additional 10% off an animal-related book, bringing your total discount to 20%. What. A. Deal.

Mondays with Mike: On a bicycle built for two

Our current ride

Our current ride

For her birthday, on December 23 1983, I gave Beth a brand new Peugeot bicycle. It was a dandy ride—a lovely light blue, classic upright riding position, folding saddle baskets, three speeds. Perfect for the young and lovely university professional who wanted to commute to campus and run errands on her bicycle.

She loved that bike. But Beth only got one good season out of it, then the diabetic retinopathy put an end to her riding days. We eventually gave it to an exchange student at the university. Beth wasn’t sentimental about many things after losing her sight, but somehow the presence of that bicycle gave us both stomach aches, so we got rid of it.

Back then, can’t remember exactly what year, our good friend Greg Schafer called one day and said he’d spotted a Schwinn Twinn tandem in one of those weekly ad papers. He and I took a look, and I took possession.

We’ve had a tandem ever since. Just this past Saturday, we schlepped our big long bike out of the basement of our building and rode to another hood for a terrific breakfast. Later we headed out on and did some grocery shopping.

It was a swell day. But. Our tandem bicycles—the Twinn lasted a long time but we’re on our third now—have been, in a very real way, a telling representation of how Beth’s blindness changes things, and how it doesn’t.

On the one hand, it’s cool we can go for rides together. And Beth still gets that feeling of the wind in her hair. On the other, it’s a circumstance that’s dictated. It’s not like we rode a tandem and fell in love with riding together one day. Back on the first hand, it’s another example of how adaptation can help fill gaps left by Beth’s disability. On the thumbs down side, like most of the adaptations—a talking computer, audio books—it’s not the same.

For Beth, she has to follow my lead and put an enormous amount of trust in me. She can’t just go for a ride if she feels like it. I have to feel like it, too. And even recruiting other friends isn’t a great solution—because in truth, it takes some practice to ride these things safely, and you have to learn to work together.

It hasn’t always been easy. And it’s sort of representative of a lot of the give and take we’ve had to work through. I have short stocky legs and prefer a faster pace in a lower gear. Beth likes pedaling slower at higher gears. I like to coast when Beth likes to get on the crank. I have to be vigilant about traffic and such, she’s just pedaling away.

And so on. It’s like that in other scenarios off the bike. It just is. And I wish it weren’t so. But it is. It’s not what we’d choose if we had the power. But we don’t. It’s the best we can do. And it’s pretty good.


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