GOOD PHOTOGRAPHY
IS MINDING WHAT MATTERS
Journal of Healing – Aug. 28, 2002

By Mary Koch

Hey, c'mere. I wanna show you my photos from this summer. Aw, don't turn the page. That's rude. Besides, these aren't typical vacation photos. They're not out-of-focus, under-exposed panoramic views of microscopic subjects, like:

"And here's the eagle we saw. Well, actually it's the forest where we saw the eagle. But right on that 18th tree from the middle is the limb where the eagle was sitting just moments before I snapped the picture."

My photos aren't like that. They're in the moment, close up, perfectly in focus with exquisite lighting. They're the photos in my mind.

Photo No. 1: You're asking who that beautiful woman is, chatting merrily with my husband as she kneels by his wheelchair. I wondered too.

Summer is created for an evening like the one in this photo. The heat disappears with the fading light. Scattered clouds are dusted with flecks of rose and reflected on the river. Across the river from our house, the usually tranquil East Side Park has gone through its annual transformation to become, for the weekend, a boisterous rodeo and carnival grounds.

John is in his wheelchair at the edge of the patio where he can enjoy the sights. I'm back in the kitchen for a moment when I glance out the window and spot the mystery woman. Click, snaps the mental shutter as I recognize daughter Jean, who lives many miles away. Not only is she paying a surprise visit, she's disguised under a charming new hairdo.

Photo No. 2: That's John and his entourage, homeward bound from our Bartlett Street Back-Alley, Back-Yard Garden Tour. An August morning, the thermometer still on the friendly side of 90, and John wants to go driving in his power wheelchair.

John's only moments of independence and freedom are when he's driving. He's good at steering and can execute a hairpin turn. There's only one problem. He can't stop. It's always full speed ahead. He depends on Russell, his No. 1 assistant and companion, to hit the kill button when it's time to stop.

That's why his driving is restricted to out-of-doors and away from crowds, yet his drives have a way of turning into parades. Along with Russell, there's Sadie, the people dog, and me, pretending to keep Sadie under control. That day we added our friend Penny, who was visiting, and her dog Tasha.

This photo has a sound track as neighborhood dogs trumpet our progress down the street, along the alley, and back. Our arms are filled with pots and planters gleaned from the senior citizen center dumpster. Rummage sale rejects still usable. Penny is carrying an enormous bouquet of Russian sage, fresh-cut from neighbor Karen's lush backyard. Click.

Photo No. 3: Evening again. The river is like glass except for a circle of small waves radiating around a teen-age grandson, who at the moment is part otter. Tim asked if he could take a quick swim, which has evolved into a luxurious, lingering inspection of every mussel and rock on the shallow river's bottom. Click.

File that one alongside a 50-year-old photo of a lake nestled in the pines and birches of northern Minnesota. A young girl, pretending to be a mermaid, is playing in the water so long her 8-year-old skin has wrinkles like an 80-year-old's.

Photos in the mind can fade a little over the years, just like photos taken by a camera. But you don't need to process, digitize or file them. And they pop into view just when you want or need them.

FEELING FLAT?
GET SHARP WITH MUSIC
Journal of Healing – Aug. 21, 2002
By Mary Koch

Every morning I help my husband orient himself by reminding him of the day, date and the day's agenda.

"It's Friday, August the 16th, and we'll be assaulting Beethoven this morning." John laughs, knowing that in a few hours my friend Nora will arrive at our front door, cello under her arm, for our weekly practice session.

John kibitzes and critiques. His most frequent observation, which he spells out with firm eye blinks: "Piano too loud." He means me.

Nora picked the Beethoven sonata we're working on. She points out that Beethoven called it a sonata for "Klavier und Violoncello," not the other way around. The piano gets most of the showy parts while the cello adds a challenging but not as impossible obligato.

For the pianist, it's a knuckle-breaker. I would love to be able to play it, but that would take many hours of diligent practice on my own. Weeks go by and I can't find even one hour for practice, other than the appointed time Nora and I spend together.

* * *

SO I HAVE adopted the Professor Harold Hill approach to Beethoven. Remember him? The con-artist band leader from "The Music Man" taught his students to "think" the music. In other words, pretend you can do it. I'm "thinking" my way through rapid runs, racing arpeggios and torrid triplets. The result sounds similar to Professor Hill's band: triumphant but clangorous.

There's only reason Beethoven is not spinning in his grave. As every music student knows, he was deaf long before he died. Sometimes I think about chucking the project, but I slog onward for two reasons: (a) John and Nora are willing to tolerate my performance or lack thereof, and (b) I may be saving myself from Alzhiemer's, dimentia and depression.

Recent brain research shows that specific kinds of mental stimulation (along with healthy living practices) may slow aging of the brain. What kinds? Things like traveling, gardening, knitting — and playing the piano.

A Michigan State University professor recently had a group of retirees take "wellness-enhanced keyboard lessons" for 20 weeks. It was a regimen of group piano lessons that started out with "warm-up stress-reduction exercises." The elderly piano players ended up experiencing "significantly" less anxiety, depression and loneliness than folks who didn't get music lessons.

* * *

NEUROLOGIST Paul David Nussbaum, from the University of Pittsburgh School of Medicine, not only prescribes strengthening the mind, but takes his own medicine. At age 38, he is learning to play the piano. Just mastering "Old MacDonald" was darned difficult, and that's why it's worth it, he says.

"We can nurture brain cells that have been dormant and build and rebuild brain cells through education and learning across our life spans," Nussbaum said in a "HealthWorld Online" interview. "How much and how well the brain is engaged will determine a healthy mental quality of life."

Barry Bittman, M.D., a columnist for "HealthWorld Online" (www.healthy.net), says he has observed "a fascinating spark that magically returns to our patients who are engaged in the process of making music."

Bittman suggests a gift certificate for music lessons for parents or grandparents. It may, he says, get them starting the day with a dose of piano instead of Prozac.

I've long suspected that music lessons, like youth, are too often wasted on the young. So go ahead. Become the musician you've always dreamed of being. And if it doesn't sound so great, don't worry. Just "think" the music the way you want it — that's what it's all about anyway.

RIDING THROUGH
LIFE'S UPS AND DOWNS
Journal of Healing – Aug. 14, 2002
By Mary Koch

My husband and I went to hear native American singer Jim Boyd at the Omak Performing Arts Center recently. For the first time since John's stroke, more than eight years ago, we entered through the front door.

There's a new ramp out front. Wheelchair users no longer have to find their way to the back door.

More than a dozen years ago, John and I campaigned vigorously to convince our community to build the new theater as part of an ambitious school construction project. To garner senior citizen support, we promised the facility would be accessible and user-friendly for the disabled.

Just a few years later, after John's stroke, we met up with one of life's little ironies as we struggled to get into the theater.

People with two working legs may have the best of intentions to provide access for the disabled. But you don't really begin to grasp the problems until you've ridden or pushed a wheelchair in real life situations — such as in a dark parking lot during a snow storm, when the handicapped parking spots are full, there no curb cuts to get you onto the sidewalk and automated doors don't work automatically. Then you begin to grasp the meaning of the word "barrier."

* * *

OVER THE YEARS I pointed out those problems to the school district, frequently with a shrill voice. My concern was not about John and me. We have our system pretty well worked out. We felt an obligation to our community, to whom we had promised an accessible building.

Not only was the back door difficult to find, it carried an unspoken but unwelcoming message to wheelchair users. The new ramp to the front door cost about $4,000, enhances the building's esthetics (in my opinion), and sends a hospitable message.

My bet is, plenty of people who don't use wheelchairs will happily use that ramp. With passage of the Americans With Disabilities Act (ADA) in 1990, a concept called "universal design" began catching on. The idea is that an inclusive design accommodating everyone can be better for each individual.

Entrances without stairs are not only better for people using wheelchairs and walkers, they're better for people with strollers, heavy suitcases and even for clumsy people who tend to trip and fall on stairs. And, of course, people who fall on stairs sometimes file lawsuits.

* * *

WHICH LEADS US back to the ADA. It has opened the world to the disabled, but it also is providing job security for lawyers. Supreme Court Justice Sandra Day O'Connor commented that the court's most recent term would probably go down in history as the "disabilities act term." Four decisions by the court during that one term are considered, by disability rights activists, to have narrowed the impact of the ADA.

But abiding by the letter of the law is hardly the best reason for building — or not building — a ramp. Dr. Tad Davis told me that when he remodeled his "Old Flour Mill" in Okanogan into a skate park and restaurant, he was grandfathered in. He didn't have to install a ramp, but he built one anyway.

It was the right thing to do. That's the best reason for doing anything. Instead of worrying about the law, let's just do what's right.

Jim Boyd's concert was the ideal venue for our first use of the new ramp. Many of his songs are about barriers — cultural and racial barriers. His message is sometimes harsh and angry, but his singing is sweet: like a horn playing the blues is sweet, like a perfectly executed double play is sweet, like wheeling through the front door is sweet.

HOMEBOUND ARE RESTRAINED
BY MORE THAN ILLNESS
Journal of Healing – Aug. 7, 2002
By Mary Koch

When my husband was diagnosed with "Locked-In Syndrome" following his stroke eight-and-a-half years ago, we were told the condition was very rare. Since then, I've learned that some 50,000 Americans are "locked in" — but not like John.

John is totally paralyzed and cannot speak, but thanks to modern technology he can at least leave home whenever he wishes.

More severely locked in are Medicare patients who receive home health benefits. Up until now, it hasn't been their illnesses or disabilities that confined them. It's been government restrictions.

President Bush took a step toward freeing the chronically ill and disabled on July 26, the 12th anniversary of the enactment of the Americans with Disabilities Act. Surrounded by TV cameras and people in wheelchairs, the President announced his administration is "clarifying" Medicare policy.

Up until now, anyone receiving home health care via Medicare couldn't leave home without jeopardizing those benefits. What an irony. A goal for anyone housebound by health problems or disability is to get out of the house.

"It is essential for me," John spelled out to me after I read this column to him.

* * *

FOR MANY YEARS, John was a home health care client, but the benefit was provided through private insurance. There were no restrictions on his travels. I don't even want to think about how bleak those years would have been if we hadn't been free to come and go like the grown-up adults we are.

That's one of the inequities of our health care system. Different rules and standards apply depending on where you live and what kind of insurance you have.

Advocating changes in Medicare is 41-year-old David Jayne from Georgia. Like John, Jayne is totally paralyzed, but his situation is far more dire. He is in the acute stages of ALS, or Lou Gehrig's disease, which is almost always fatal. Jayne requires both feeding and breathing tubes. He communicates by raising his eyebrows to operate a speech synthesizer.

If life weren't already difficult enough, Jayne got into real trouble by attending a college football game. With the exception of hospital stays, it was his first overnight trip away from home in three years.

"The trip was difficult but wonderful," he said in a television interview. "I had not felt that alive in years."

* * *

QUITE A HUMAN interest story. It got written up in the local paper, and his home health agency yanked his services. He was no longer homebound, the agency reasoned – unreasonably. Despite his disabilities, Jayne launched a campaign that ultimately led to Bush's action.

The President made an important first step, but advocates for the disabled and homebound say there's a long way to go. Medicare still is in the position of telling people when and under what conditions they can leave home, says Henry Claypool, who is with an organization called "Advancing Independence."

John, who rarely makes a sound, vocally agreed with Claypool's comments on the evening news:

"It's an issue of freedom," Claypool said.

Money, of course, is the real issue. Congress has steadily decreased the Medicare home care budget, which now stands at about $13 billion a year. Loosen restrictions and there will be more demand for services and more pressure for funding.

Technology, especially improvements in wheelchairs and other mobility equipment, is making it easier for people to get out and about. Medical advances are keeping people alive longer, even after a terminal diagnosis.

But what's the point of keeping people alive, if they can't have a life?