Meet Gus, our son.

Our little man and his mom.

He’s 30. He laughs heartily when I sing to him in a Louis Armstrong voice. He loves music, especially stuff that has unusual rhythms—Prince is a favorite. He doesn’t seem to be able to see very well straight ahead, but he manages with his peripheral vision. And he knows Beth’s voice and my bearded face.

He can’t talk. He can kinda’ walk with assistance. And he wears diapers. He lives in a group home in Watertown, Wisconsin. It’s operated by Bethesda Lutheran Communities.

Gus was born with a genetic anomaly called trisomy 12-p. Pretty rare. The only literature we found at the time said he was unlikely to reach age 30. But he did. I’m proud of him. And of us. And of my fellow Americans who made it possible.

By the time Gus reached age 16 he was mobile and strong enough for it to be a safety issue for him and for us. We were lucky to find Bethesda. It’s a religiously affiliated non-profit. It gets donations. But it can’t do what it does without help from the broader community—like Medicaid and other programs.

Gus needs help with everything. And he gets it. From salt-of-the-earth-people who make, essentially, the minimum wage. Medicaid helps pay for that. But barely enough. Bethesda is in the midst of financial struggles, as are lots of such agencies across the country.

Gus gets medical care from providers who accept Medicaid. It’s hard finding providers in some fields—like dentistry—but overall, compared to a couple of his housemates, he’s fortunate to not need a lot of specialists’ care.

I want you to trust me on this. I’m a pretty smart person. I love my son. I’ve watched closely. No one’s getting rich off of others’ labors in this equation.

Gus is served by a Wisconsin program called Family Care, which is essentially a kind of HMO for people like him. Family Care administers Medicaid funds and pays the group home operators, and oversees the operators, and looks after Gus’ care, and communicates with us about his health and any behavioral issues. Family Care does a very good job.

Which is great—but we’re lucky to have Bethesda looking out after him because they’re on it. We always hear pronto from Sarah, who’s a lead at the home where he lives, if anything is amiss with Gus.

Beth and I have always worked. We’ve paid a lot of taxes. But even if we were totally frugal, we couldn’t cover the cost of Gus’ care. And though we’re both sort of healthy, we haven’t been able to provide that care directly for a long while now.

I’ve worked at non-profits, at government-supported institutions of higher education, at startups, and at Fortune 500 companies. I’m here to tell you, they’re all a mess. They’re a collection of humans being humanly clumsy. They all rely on enough people trying to do the right thing. If not enough of those people are in the right places at the right time trying to do the right thing, failures ensue. Government. Private sector. Doesn’t matter.

There are worthwhile discussions to be had about the devils in the details of programs like Medicaid, Medicare, etc. I’m not a rigid ideologue. Everything can work better than it does.

But we’re not having that discussion anymore.

Awhile back I wrote a post about how when bad things happen you can feel pretty alone. And about the value of understanding that you’re not.

Right now I’m feeling pretty alone. So are a boatload of other people.

I hope you’ll speak up and prove us wrong.

In addition to leading weekly memoir-writing classes for older adults, I work part-time moderating a blog for Easterseals National Headquarters here in Chicago. For the past couple of weeks we’ve been publishing posts on the Easterseals blog written by people with disabilities who count on Medicaid to help them pay for everything from personal care attendants to doctor visits.

My co-worker Erin Hawley has muscular dystrophy and describes herself as a “Geeky Gimp.” She’s the digital content producer for Easterseals Thrive, a site providing mentorship for young women with disabilities. When she’s not at work, Erin watches lots of Star Trek, meets up with her board game group, obsesses over Mariah Carey, and attends pro-hockey games — all while working on a Master’s degree online from East Carolina University.

The post Erin wrote about Medicaid changes for our Easterseals blog was quoted Tuesday in an opinion piece on CNN called Medicaid Works — Let’s Keep it That Way.about proposed changes to Medicaid. I was moved by Erin’s post, and thought you Safe & Sound blog readers might be as well. Here it is:

by Erin Hawley

Erin Hawley

Almost every morning, a personal nurse gets me up and dressed so I’m ready for work. They assist me with eating, toileting, and keeping my airway open – the basic necessities of life. When I don’t have a nurse, my parents and boyfriend take over those duties, ensuring my ability to live in the community rather than a nursing home or other institution. Medicaid pays for my nurses and the medical supplies I need – paying for these out-of-pocket would cost more than my entire paycheck. And without my nurses and med supplies, I could not live how I choose to live, and how I must live. My happiness and well-being shouldn’t be contingent on whether or not I can afford healthcare.

The drastic cuts to Medicaid in the AHCA would be a disaster for anyone receiving services under the program, and low-income disabled people would be the hardest hit. In many states, Medicaid is already on a strict budget; further cutting that budget puts states in a difficult position of denying its citizens the care they need to thrive in the community. Low-income individuals already struggle to stay afloat, and losing personal care assistance, medication coverage, or access to a physician could lead to worsening health or even death. This is not hyperbole; states that rejected Medicaid expansion made their citizens suffer, possibly leading to over 7,000 deaths. Cutting Medicaid further would simply put more lives on the line. The program may not be perfect as many still don’t receive as much care as they need, but the answer is not pulling funds to an already underfunded system.

The Senate needs to make the right decision, and side with their constituents who would suffer under the AHCA. Cutting Medicaid would also endanger the programs at Easterseals that give people with disabilities the freedom to live independently, go to work, attend school, or find a community of friends. The AHCA would endanger all ages, from babies to seniors. And if you don’t think it’ll affect you, remember that you or a loved one could become disabled at any time and require the services Medicaid provides. Even if you are not directly affected by the AHCA, someone you know probably is, regardless if they speak about it publicly. We can’t prosper as individuals or as a society if a portion of its citizens are literally fighting for their lives.

I am asking that you call your senators or send them emails asking them to protect Medicaid. Easterseals has a list of resources available on how to contact your representatives, including images you can use on social media to further this cause. Let’s work together to #SaveMedicaid.

Two weeks from now I’ll be flying to New England to write in the surroundings of a national park in Maine. Or should I say, in Canada?

FDR slept here.

I am one of a handful of writers accepted to Iota: The Conference of Short Prose at Roosevelt Campobello International Park this year. The schedule they sent with my acceptance letter clued me in on just how international this conference location is. “All times on the schedule are in U.S. EST.,” the IOTA director wrote from the conference office in Lubec, Maine, pointing out that Campobello Island is a New Brunswick island in a Canadian time zone. “This is a source of constant confusion, and we’ll go over it all when we’re together.” As a P.S,. she reminded us to bring a passport. “You’ll need it!”

Roosevelt Campobello International Park was created in 1964 after an international treaty was signed by Canada’s Prime Minister Lester B. Pearson and U.S. President Lyndon B. Johnson. Both countries provide financial support to the park, and Parks Canada and the U.S. National Park Service share responsibility for its upkeep.

The conference promises three days of writing workshops, facilitated discussions and nightly readings led by published authors Abigail Thomas and Debra Marquart. Any of you Safe & Sound blog followers who liked the memoir A Three Dog Life as much as I did will understand how eager I am to meet Abigail Thomas – she’s the one who wrote it. Debra Marquart is no slouch, either – I just downloaded an audio version of her memoir The Horizontal World and plan to finish it before we fly to Bangor in July.

Abigail Thomas is from upstate New York and Debra Marquart is from Iowa. Both teach writing during the year, so in addition to working on my own writing at the conference, I’m also hoping to pick up some teaching tips I can use in the memoir-writing classes I lead in Chicago when I get home.

Of course I’ll be bringing copies of my book Writing Out Loud to share with my new best friends Abigail and Debra. And with other Iota participants, too, whether I meet them in Maine, or in Canada.

Some twenty years ago, when Beth and I lived for a couple years on the Outer Banks of North Carolina, one of our beach friends talked me into joining her at yoga class. I’d heard and read good things about yoga, but I confess that I had a crunchy granola prejudice against it that made me a little reluctant.

Plus—especially back then—yoga classes seemed to be attended overwhelmingly by women. Not that there’s anything wrong with that, and I like being around lots of women as much as the next person (if I were ever single again I’d do two things: get a puppy and walk it a lot, and take yoga). But it can make a person self-conscious.

But, our friend was persuasive and one day I joined her at class. I’m glad I did. Like lots of self-inflicted trepidations, my reluctance was not well founded. I really enjoyed the class. I learned that it’s surprisingly rigorous and relaxing at the same time. I got stronger, my balance improved, and my joints ached less.

My yoga bro Steve is threatening to bring this to class.

Of course, like a lot of things that are good for me, I let yoga lapse. I took a class here and there but never stayed with it. But over this past year, I’ve found myself wanting to say “oil can” more and more often when I get out of bed.

So I talked our friend Steve into joining me in a beginner’s class at Tejas Studios, just a healthy walk from our neighborhood.

And again, I was struck by how hard it was to do these things that don’t seem like they should be hard. And how much I sweated and how tired I got without ever leaving my little yoga mat. But it really felt great.

After our first class Steve and I turned our phones back on and found we had texts from our spouses. Steve’s spouse Laura, Beth and our friend Ruth were Kasey’s, a local watering hole, and we should meet them there. So Steve and I, relaxed and refreshed from yoga, bounced up in our elastic tights and our neonish yoga mats to meet our womenfolk, who were huddled around a table over their beers. As Steve put it, what’s wrong with this picture?

It was then that Laura noticed that my neon green yoga mat nearly matched my neon green Nikes. This was wholly unintentional: I’d purchased each online at steeply discounted prices because, well, they’re neon green. There were a few requisite Lululemon jokes and a good time was had by all, albeit much of it at Steve’s and my expense.

Steve couldn’t make the next class (he took a makeup session) so I made it through on my own. Again, it was rigorous enough for me to feel like I’d run several miles even though I never got out of a 10 square foot space.

On the way home, I remembered I needed some vegetables to go with the fish I was going to cook the next day. So I stopped at Trader Joe’s. And as I checked out, I realized: I’m in my yoga clothes, with my yoga mat, talking to a pierced, tattooed exuberantly happy clerk who clearly approved of me.

I called Beth from the store and explained the little tableau I found myself in. I felt like asking, “What’s happened to me?” At least she didn’t say “I don’t even know you anymore.”

Namaste.

One of the many many things I love about people of a certain age? They answer their phones when you call.

Gwen and her big-hearted spirit lived to tell her story. Photo by Darlene Schweitzer.

After my new book Writing Out Loud came out last month, I dug up a computer file from a dozen years ago and started tracking down the seniors who’d been in the first memoir-writing class I led in Chicago. A few have moved away since then (some to the Great Beyond) but here’s another bonus to working with seniors: many never change their phone number. And so it was that I could pick up the phone, dial Gwen’s number from 2004 and, abracadabra! A familiar (and amazingly recognizable) voice answered.

A very moving and poignant essay Gwen wrote when I assigned “1968” as a writing prompt is featured in Chapter 8 of my new book. The subtitle to Writing Out Loud is “What a Blind Teacher Learned from Leading a Memoir Class for Seniors,” and boy, oh boy, did I learn a lot from Gwen.

I figured the 1968 prompt would lead to a lot of essays about the Democratic Convention in Chicago that year, but I was wrong. The writers had jobs in 1968. “We couldn’t take off work to go downtown and bother with that mess,” one of them told me.

Their essays definitely spoke of the times, though. Gwen read right after Tom that day in class. Tom grew up on Chicago’s South Side and wrote that he and his wife had decided to move their family to the suburbs that year. As Tom delicately put it, the neighborhood was “changing.”

Gwen and her husband had also decided to move their family to a new house in 1968. Over the phone last month Gwen and I had a spirited conversation about the essay she’d written about that move, and I invited her to come to a party celebrating Writing Out Loudwith writers from my Grace Place class here in Printers Row and the “Me, Myself and I” class that meets at the Chicago Cultural Center.

That party was last Friday afternoon, and Gwen and two friends drove 30 miles from the far south suburbs to be here with us. Attendees seemed tickled to meet Gwen and the writers from other classes. One party-goer told me, “It’s so great to put faces to the people in your book!” and I overheard someone else asking Gwen for an autograph.

I’ll leave you here with a promise to share more about other characters who’ve been with me at book launch parties and book signings the past few weeks. For now, here’s an excerpt from Gwen’s chapter, Chapter 8: “1968.”

“On the day of the closing we took our sons out to see their new home,” she reads, explaining it was located in the Rosemoor neighborhood on Chicago’s far South Side. “Our boys were excited to have a larger home, although they didn’t want to leave their friends. My husband and I were happy that the house had been vacated by the former owners and we had immediate possession.”
But Gwen’s husband called her at work the next day with disturbing news. Someone had tossed a chemical into their house – the chemical simmered throughout the night, eventually burning through the floor. A worker from People’s Gas Company who had been sent out to take a final meter reading the next morning noticed the windows were all black from the smoke. He called the fire department.

“The fireman, who knew how to enter a burning house, told us that if we had opened a door, the house would have exploded and been completely destroyed,” Gwen writes. “We were completely unaware that we were the first Black family to move into that block. Had we known, we would have skipped that area. I did not want to put my children in danger.”

Their three-year-old was afraid to enter the house, so the family moved into Gwen’s brother’s attic for a few weeks until her husband decided it was time to clean up the house and move in. He checked on it every evening during the process, hoping the culprits would return.

“But of course they didn’t,” Gwen reads. “And I was glad. I didn’t want a confrontation.”

After about a year, the family finally moved in. But Gwen tells us it took a long, long time before they could relax in the house. “It seemed that every time we started feeling comfortable there, the weather would turn humid and the smoke smell would seep down from the attic.” They lived there for 20 years, and after the kids were grown they moved to the south suburbs.

Gwen can barely speak for sobbing, but as she nears the end of her essay, she straightens herself, catches her breath, and finishes without a hint of anger or bitterness: “We cannot allow the actions of a few to poison our minds and cause us to react in a manner that would be completely contradictory to what Martin Luther King and other Black leaders have preached and marched against.”

When Gwen is finished reading, Tom says he thought that kind of thing had ended long before then. He had no idea people were still burning houses down like that in 1968. A quiet chorus of “uh huhs” rises from the other South-Siders in class. Gwen says she’d buried this whole ordeal deep inside until I gave the assignment to write about 1968. “It all came back to me then,” she says.