From Millionaire to Medicaid

With official escort, John (in wheelchair under the red shade umbrella) leads a parade across the mile-long Grand Coulee Dam spillway

If my late husband could’ve written his memoir, the title might have been “From Millionaire to Medicaid in One Not-so-easy Stroke.” Some twenty percent of U.S. citizens access health care through Medicaid, the government program for the elderly, disabled and poor. John certainly never expected to be one of them. He was a successful, small-town newspaper publisher when he was paralyzed by a brain stem stroke at age 61. Diagnosed with “Locked-In Syndrome,” John’s fully functioning brain was locked inside a body that could not move, speak or eat.

He required skilled and vigilant care 24/7. He was fed through a stomach tube. A tracheotomy tube protected his airways. He communicated by blinking his eyes, using a simple alphabet code. We were determined that he would live at home, not in a facility. We had good insurance, but insurance doesn’t cover everything and eventually benefits run out.

We sold our newspaper—the beloved business that had brought us together and been our shared life—for a million dollars and change. I spent it all. I spent it on paid caregivers, reducing my caregiving load to only 80 or 90 hours a week. I spent it on assistive devices—everything from a talking computer to a specially designed shower chair. I spent it on physical, occupational and speech therapy. Daily therapy motivated John to live.

There’s a medical myth that stroke survivors “plateau” or stop recovering anywhere from six months to two years after the event. Seven years after his stroke, John was finally able to steer his electric wheelchair, leading a parade of friends and family across the mile-long spillway of Grand Coulee Dam. It was a publicity stunt to dramatize the importance of long-term therapy for stroke survivors. John’s determination drew national media attention.

Ultimately our money ran out. It’s been well established that medical bills are the chief reason for family bankruptcy in the United States. I knew of broken-hearted spouses who were forced into so-called “Medicaid divorces,” the only way they could get care for their loved ones. We escaped both bankruptcy and divorce with the help of an adept attorney. When I expressed embarrassment to a social worker about receiving state aid, she contrasted what we were receiving to what it would cost to put John in a nursing home, where nearly two-thirds of Medicaid patients live.

“The state’s getting a bargain,” she said.

Nearly fourteen years after his stroke, John died of respiratory failure. He did not leave a wealthy widow, but those fourteen years were the richest time of my life.

Because of today’s political climate, Medicaid cutbacks are apparently inevitable. Under proposed legislation, they won’t be immediate. It’s more like the proverbial frog who sits calmly in warm water on the stove. When the water ultimately gets too hot, it’ll be too late. We’re all going to feel it in when we reduce what is already minimal care for our poor, disabled and elderly.

Hot and tired, John and Sadie after the Grand Coulee Dam publicity stunt

Park It Here

RV Park in Clear Lake, Iowa. No extra charge for Sunday services.

Like a turtle, I drive across the country within the shell of my abode. At the end of the day, I have to hunker down somewhere in my camper/van. I have yet to hang out with other RVs in a Wal-Mart parking lot. That’s called dry camping — relying on your vehicle for power and water. My vehicle has the capacity, but I lack the audacity. I prefer snuggling up with other rigs in the tight quarters of an RV park just so I can plug into that lifeline that RVers call “shore power.”

I’ve paid anywhere from zero to $49 for an overnight stay. The latter sounds like a lot, but RVers in those big fancy rigs expect a lot in addition to basic water, power and sewer: wi-fi, a full spectrum of TV channels, swimming pool, game room, miniature golf, laundry, etc. Some parks won’t accept rigs older than 10 years. Mine is a 1996 Dodge — usually the oldest and smallest outfit in the park. I’ve never been turned away, because—explained one park employee—I stay only one night.

At the high end are the KOAs—the Holiday Inn Express for RVs. You always know what to expect at a KOA. There’ve been a few long days of driving when I’ve been darned glad to land at a KOA. More often, I look forward to a certain element of surprise that independent parks offer. Why else bother to travel?

I rely quite a bit on the RV community, which reviews parks at various sites online. The reviews often tell as much about the reviewer as the park. I’m amused by RVers who want easy access to the park but in the next sentence complain about freeway noise. If I end up near a freeway, I just close my eyes at night and pretend the roar of vehicles is the pounding of surf on an ocean beach.

One of my favorite places this trip was an old park with new owners in Waco, Nebraska. It’s a mom and pop operation—a couple in their 30s or so. They bought the place, said the dad, “because the location was right, the price was right and it was so terrible I wouldn’t let my own family stay here.” They’re well along in fixing it up. They assigned me a spot where I drank in the view of pond and neighboring golf course while sitting in one of several old-fashioned, wooden porch swings that the owner and his dad made.

The most iconoclastic find was Oakwood RV Park in Clear Lake, Iowa, where amenities included a country church, built in 1890 and still active. I wasn’t there on a Sunday, but the park brochure informed me services are held at 9 a.m. Park brochures list various rules, usually about quiet hours and keeping dogs on leash. This one added, “Please don’t feed the chickens.”

Last night I pulled into my favorite park of all. After 5,063 miles, it’s good to be home.

Traveling Companions

Tawny (left) and Daphne at our campsite on the bank of the Ohio River

“Oh, you have dogs!” the woman exclaimed with a combined tone of relief and comprehension. She’d been walking purposefully toward my campsite in a crowded RV park when she spotted my dogs, Daphne, the aging black lab mix, and Tawny, the adolescent every-breed mix.

About my age, Joan from Pennsylvania had spotted me an hour earlier as I was checking into the park. She and her sister were traveling cross-country in a camper van the same size as mine but much newer. She immediately wanted to know how an older woman dared to be on the road by herself. When she saw the dogs, she quickly understood.

It’s true that the dogs provide a sense of security, both at home and on the road. They’re friendly, yet they have loud barks that might ward off danger. Their companionship is far more valuable than just the warning bark. A person who lives alone, and especially a person who travels alone, is in danger of becoming totally self-absorbed. Tending to dogs doesn’t allow that. Their needs have to be addressed first thing when I get up in the morning, last thing before I go to bed and throughout the day. On the road, when I’m tempted to pass up rest stops so I can clock more miles, I know they need the break, so I stop. In truth, I probably need the break more than they.

Today as I drove, I managed to find a public radio station amidst the FM static and heard a report about a new study that determined dog owners in their 60s and older walk more than non-dog owners. Another study by the American Heart Association concludes dog ownership probably leads to a lower risk of Cardio Vascular Disease.

Most of all, dogs are bridge builders. They inevitably spark conversations with strangers who want to pet them and know more about them, who want to tell you about their dogs. The other morning, in a crowded campground, a toddler had his first opportunity in his short life to pet a dog. He fondled Tawny’s silken ear, to the delight of them both.

Driving, living, eating, and sleeping in an 18-by-8 foot space with two large dogs does not make for a pristine environment. Both dogs shed. I could sweep and vacuum on a daily basis, but I’ve given up. I’ve adjusted to the fact that I’m privileged to be traveling in a four-wheeled dog kennel with air conditioning, running water and canine companions.


Driving through the Badlands on paved roads–almost too easy.

If you want to get to the Badlands of South Dakota in the worst way, I can tell you how. First, however, I must say that the Badlands are badly named. The designation apparently originated with natives, because the harsh environment was not favorable to subsistence living. For the 21st century traveler, however, venturing through the massive, wind sculpted formations with their brilliant coloring is like entering a grand cathedral, hand-designed by the Creator.

But I digress, and because as a traveller I am prone to digression, I also get lost—at least once a day. My GPS voice has adopted an exasperated and sometimes irritated tone as it instructs, “Make a u-turn …”

I favor roads less traveled by and that, as Robert Frost advised, makes all the difference. In my case, the difference between smooth sailing from Point A to Point B at 70 mph on the Interstate, as opposed to rumbling across gravel, washboard roads while choking on dust at 15 mph tops. That’s the worst way to get to the Badlands.

I’ve driven through the Badlands in the past. This trip I wanted more time and fewer crowds. I consulted a map—never a good idea—and found a two-lane highway that would take me into Badlands National Park from the rear. Not only that, I spotted a gravel road that would cut off a number of miles. You can always count on a shortcut to extend travel time. The road was so rough, everything inside my van shook. The vehicle has been quivering ever since. When I finally reached blacktop, I wanted to jump out, get on me knees and kiss it.

My proclivity for misdirection landed me onto another gravel road in Indiana. I was headed for Harmonie State Park, only I wasn’t. One of my problems is an inability to cut my losses. When I’m on the wrong road, I stubbornly stick with it until I can’t go any further. In this case, I ended up in someone’s backyard. I was turning around, being careful not to hit the owner’s truck when I heard a bang. I’d knocked over a portable basketball hoop that was in my blind spot.

The owner came charging out of his house followed by his wife. He immediately pointed out that the post was rusted at the bottom, had long been a goner, his grandkids hadn’t used it in years, and was my van OK. Then we had a long chat about their visit to Washington state a few years back and various other topics. Do you want my insurance information, I asked. He guffawed at the idea and waved me back up the gravel road to the park, which had a paved road.

They were the first two people I met in Indiana, and they surely gave me a grand welcome to their state. If I hadn’t been lost, I would’ve missed it.

Oregon Trail

DSC_8700I was inspired to travel the Oregon Trail after reading “Women’s Diaries of the Westward Journey” by Lillian Schlissel. The book is a compilation of what women’s records of their experiences during the massive exodus between 1840 and 1870. The women bluntly describe the hardships, danger, congestion, duplicity, disease and starvation that were rampant. A quarter of a million Americans gambled that they’d survive the trip. Ten percent lost the gamble. A not infrequent cause of death for women was childbirth.

Those phenomenal three decades of expansion created a nation, as the politicians planned. It was also an invasion of holocaust proportions, all but extinguishing native cultures that had thrived for thousands of years.

Sculpture of pioneer emigrant at National Trail Center in Independence, Missouri

There are four trails, really: California, Oregon, Mormon and Pony Express. Today’s roads sometimes cross, sometimes parallel, but only rarely duplicate the early trails. It took the emigrants up to six months to make the journey. These days, it would take at least six months to visit all the historic signposts, sites, museums, cemeteries and roadside attractions. I’m trying to do it in six days. Experiencing the landscape, even though it’s greatly changed from 150 years ago, sharpens my sense of incredulity. However did they do it?

The immensity of the migration is mirrored in the vastness of the territory. I drive at 60 to 70 mph, trying to imagine walking this distance, step by step. The story is too big for telling. So many books have been written about the trail, their assembled pages would probably more than paper the thousands of miles. Still, much is left to imagination.

I pick and choose my stops, absorbing maybe one or two stories a day. At the grave of 18-year-old Rachel Pattison, I learned that she and her 23-year-old husband Nathan were DSC_8682newlyweds, on the trail with Nathan’s parents, five brothers and other relatives. They’d gone no further than current Nebraska when Rachel came down with cholera one morning and died that evening. Nathan buried her there, finding a rock on which to carve her headstone. After great privation, the Pattisons ultimately reached Fort Vancouver. Nathan never remarried. He died in Olympia at the age of 67.

I was amazed and delighted to find some of the most sensitive writing about the trail in a series of small, free trail guides published by the National Park Service. The text articulates the complexity of the era and its events.* The fatality rate on the trail,  the guide concludes, “was no worse than that of eastern cities, where disease and poverty ran rampant. Hope wrestled with fear as Americans started out across the Kansas prairies — and hope generally won out.”

*Small print in the back indicates the writing and editing were by Lee Kreutzer and Chuck Milliken of the National Trails System.

Walking With the President

Harry Truman Walking Trail
Truman Historic Walking Trail in Independence, Mo.

It dawned on me that our 33rd and 45th Presidents have four things in common: the first four letters in their surnames. Surely someone else already figured this out, but I haven’t heard or read any commentary on this coincidence. Their names also uncannily reflect their character. Truman could be parsed Tru[e]-man. Trump has a variety of meanings, including—in cards—a superior suit or a surprise card that can win the “trick.”

I don’t know that the two Presidents have much else in common. Admittedly, Truman was, like Trump, capable of venting publicly, especially in response to negative critiques of his daughter’s short-lived career as a singer. While Trump follows Truman’s footsteps chronologically, I followed those footsteps literally yesterday. I walked with my dogs along the Truman Historic Walking Trail in Independence, Mo., Truman’s beloved hometown.

I’m too young (Oh, gosh. That was so much fun to write, I’m going to repeat) … I’m too young to remember Truman as President. Eisenhower was the first President I was aware of. His grandfatherly image is the one I’ll always superimpose on the office. Succeeding Presidents either live up to that naive childhood perception, or they don’t.

Only in college did I become intrigued by Truman and the ongoing debate whether he is to be considered one of our “great” leaders. After leaving the presidency, Truman returned to Independence. Reportedly, his daily routine included a walk around town. His walk has been memorialized with maps and large signs. Plaques are embedded in the sidewalk in front of gracious, large homes of the era. You learn where Harry’s poker playing buddies, Bess’s bridge club members, and even a “staunch” political opponent lived.

As I walked, I wondered. What if I were the person who’d approved the unleashing of atomic power to end a war, causing the horrific deaths of innocent civilians. What would I be thinking about on my morning stroll past the homes of my lifelong friends.

I know that if it’d been my decision to make, it would’ve ultimately driven me mad. Perhaps it was returning to these Midwestern neighbors, who just wanted to live their lives simply, as good people, that kept Truman sane. Or so it would seem.

Butterfly House

IMG_4030Fortunately for me, my sister’s personal totem is the butterfly. Otherwise I probably would’ve skipped visiting the Butterfly House & Marine Cove in Sioux Falls, SD. I stopped, planning to pick up a postcard to let her know I was thinking about her. Turned out, her devotion to butterflies was a gift to me.

The Butterfly House is way more than a tourist attraction. Situated in a beautiful city park, the building even looks butterfly-ish. The facility offers a range of educational and healing programs.

There’s an aquarium room with an array of brilliantly colored sea life, even a shark petting pond. But I didn’t linger. I was there for the butterflies. To enter the butterfly room, you open a heavy door and wait in a small, dark foyer until the door has closed. This is to assure no critters escape. When you open the second door, the first thing you do is smile. You can’t help it. C.S. Lewis himself could not have created such a scene behind his fabled wardrobe.

More than 800 butterflies from all over the world are flying freely. They present a range of colors, sizes and intricate wing patterns that push the boundaries of imagination, much less description. Their habitat is Eden-like. In the 80 degree climate, tropical flowers burst with bloom. A pond is filled with small fish. Scurrying under the lush plants are tiny Asian blue quail.

The website claims, “Research shows that viewing peaceful nature scenes helps reduce blood pressure, heart rate, breathing rate, and stress while improving mood and speeding recovery time.” I don’t know about my heart rate, but my joy quotient skyrocketed. I strolled and watched, grinning like an idiot.  A woman walking toward me had the same kind of smile on her face.

I wanted to stay all day, but the road beckoned. Leaving was the same process as entering. A volunteer checked me over to make sure I had no hitchhikers on my body. No butterflies escaped with me, but the joy lingers. I was reminded: there is much goodness in this country.

The Butterfly House in Sioux Falls, SD