Don’t bother knockin’ if my brain is rockin’

I was thrilled to be able to get the word out via a story in the Washington Post’s health section (reprinted below) about the crazy travel-related illness that I and others suffer from.  It’s called Mal de Debarquement, or MdDS, and is commonly (but not exclusively) triggered by going on a cruise. The main symptom is a constant rocking feeling, like you’re still on the boat. My big news is that I think the disease goddess chose to reward me for writing the story, because my “motion hallucination” seems to have finally dissipated after six months.  Read on if you’re interested in this fascinating blip of the brain, and spread the word so doctors will finally believe us!

Rare disorder makes people feel off balance for weeks or months

By Diane Daniel
Special to The Washington Post
Tuesday, March 16, 2010 

When Claudette Broyles tries to describe to friends how she feels, she likens herself to a balloon on a string, tied to a post.

“I’m constantly rocking and swaying, but the level changes,” said Broyles, 60, of Woodstock, Va. “If I’m having an average day, then it’s like I’m a balloon in a mild breeze. If I’m having a bad day, it’s like it’s really windy.”

I hadn’t heard the balloon analogy before, but I could relate.

This sailing trip in the Virgin Islands triggered my second bout of MdDS, in 2003

Broyles and I suffer from mal de debarquement syndrome (MdDS), an uncommon balance disorder that one researcher describes as “motion hallucination.” For weeks, months or even years at a time, we feel that we are rocking, bobbing, swaying, even though diagnostic tests for balance, hearing and vision show up normal. The name for the illness is French for “disembarkation sickness,” so called because it most frequently occurs after being on a boat.

Of course, many people have experienced the swaying sensations that occur just after a boat trip. But for those with MdDS, that feeling doesn’t let up; it persists with varying degrees of severity, causing everything from clumsiness to the inability to walk without some kind of support.

Just how many sufferers there are is unknown, says neurologist Yoon-Hee Cha, who this year launched a study funded in part by the National Institutes of Health, the first time federal money has been used for research into the syndrome.

“We don’t know how many people suffer from MdDS since many people are not able to get the right diagnosis,” she said. “Until there is more widespread familiarity among physicians, we won’t know for sure.” She isn’t sure who gave MdDS its name, but she believes it was first diagnosed in the late 1980s.

Cha, of UCLA’s David Geffen School of Medicine, uses neuro-imaging to try to identify the location in the brain affected during MdDS episodes, with the hope of finding a treatment and a cure.

“It’s a real disorder, even though patients don’t look sick. It’s still very under-recognized among physicians, so a lot of patients are educating their doctors about it,” she said.

Broyles is going through her fifth round of MdDS in 28 years. Most episodes, she believes, were triggered by boats, but the latest occurred after a turbulent flight from England. The first two subsided within a few weeks, and the other two within six months. Her most recent? It has lasted eight years — so far. The disorder prompted her to move from Fairfax to slower-paced Woodstock and has altered her life in many areas, she said.

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They’re dying for you to see it

Race car #61, marker for Joey Laquerre Jr.

I recently came upon a mention of Hope Cemetery in central Vermont, bringing back memories of our own visit there a few years ago. Situated in the small city of Barre, the “Granite Capital of the World,” the cemetery is the canvas for masterpiece markers honoring deceased granite workers. Some are somber, some are playful, and some are just wild. Here’s a piece I wrote about it for the Boston Globe: 

BARRE, Vt., — It was a dark and stormy day. And all the better for visiting Hope Cemetery, except that our marker map got soaked. This cemetery in central Vermont is no ordinary final resting spot, but a Louvre of memorial art. 

In memory of soccer fanatic Robert Davis

When you live granite, as a huge number of Italian immigrants did a century ago in this working-class Vermont city, you die granite. What better way to memorialize a granite sculptor or a worker’s loved one than with a locally produced and quite unique grave marker? 

The 65-acre cemetery, just north of Route 302, is a lovely setting for viewing and strolling. Visitors — from all over the world — are a common sight. A large burial service was going on when we were there on a late fall afternoon, which kept our mood rather somber. That is until we came upon the granite automobile marker, and the airplane, and the soccer ball. These markers celebrate life as much as mourn death, striking a balance between comical and poignant. One of my favorites was an oversized chair in the form of a favorite chair of the deceased. 

Elia Corti's impressive gravestone stands out as being cut from a single piece of granite

The floral carvings are also amazing, and the Visitors Guide to Hope Cemetery, published by the Barre Granite Association, explains the meaning of some of the flowers. Roses symbolize love and wisdom, Easter lilies, purity, and calla lilies sympathy. 

One of the cemetery’s most famous gravestones is that of Elia Corti, who died at age 34 in 1903. This large statue was cut from a single piece of granite and is a life-size likeness of the deceased, carved by his brother. In the sculpture, Corti is seated with his right elbow on his knee. Seams, wrinkles, and creases, and buttons are detailed in his clothing. His face is extraordinarily lifelike. The tools of his trade surround him. All this from one block of rock. 

A granite cube honors Paul Martel

You’ll also come upon bas relief carvings, including one of an angel and another of an elaborate sailing ship said to symbolize salvation. There are family mausoleums as well. The Vanetti family’s has eight crypts. The elaborate grillwork on the door is made from granite. 

Whether your day is dark and stormy or sunny and clear, this is a place to celebrate life and the rocks of ages. 

Hope Cemetery is at Merchant Street at Maple Avenue in Barre. For a map, contact the Central Vermont Chamber of Commerce, 877-887-3678. The cemetery can be reached at 802-476-6245.

Endearing robots steal the shows

For the March 6 edition of my regular “Who & Ware” feature on artisans for the News & Observer in North Carolina, I wrote about Amy Flynn, an amazingly creative maker of artsy found-object robot sculptures. Read on and make sure you check out her online gallery: 

By Diane Daniel

Amy Flynn with her creations

If you’ve been to the Raleigh Flea Market on a Saturday morning in the past year, chances are you’ve encountered Amy Flynn scouring the tables and stalls for, well, she’s not really sure. “I’m never looking for anything in particular,” the Raleigh artist said. “The most fun is seeing something you’ve never thought about using.”

Later she amends this.

“There is this certain type of drawer pull, if you turn it around backwards it makes the most wonderful cat whiskers,” she said. “I do have a couple vendors on the lookout for those.”

Over the past 18 months, Flynn, 49, has gone from underemployed illustrator to successful creator of unique robot sculptures. Except for a few nuts and bolts, the 10- to 20-inch-tall creatures are fully made from her vintage findings at flea markets, yard sales and, if pressed for a particular object, on eBay. The “Fobots,” as she calls the found-object robots, are artistic, humorous and totally endearing.

Junior Birdman

“They’re not symmetrical. There’s always something off, like one eye bigger than the other, or the arms are mismatched. I really feel like that’s what makes them human,” she said.

Take, for instance, “Junior Birdman.” His body is a bird food tin, his arms are faucet handles, and his head is a tea ball topped with a toy propeller. Other components include hydraulic fittings, a button and watch gear.

The Fobots’ debut has been well received. In the past year, they have gained Flynn entry into some of the country’s most competitive art fairs, graced the pages of the Anthropologie catalog and, most recently, earned a cameo role in the ABC comedy “Ugly Betty.” In the March 10 episode, 14 Fobots lined the shelves of the tube walkway that connects the reception area to the inner sanctum.

Flynn is surprised, elated and a little embarrassed by her success at a time when many veteran artists are having a hard time.

“I want everyone to do well, not just me,” she said. “The most important thing isn’t the success or the sales. It’s that I’m just really happy doing this.”

For many years, Flynn was content as an illustrator, doing what she’d always loved.

“My mother will tell you that I’ve had a crayon in my hand since birth.”

Flynn's robots grace "Ugly Betty" show

Her first job out of San Jose State University in California was with Hallmark Cards, illustrating greeting cards. Later she did similar work at Current in Colorado, and eventually left to freelance so she would have time to illustrate greeting cards and children’s books. Her drawings for cards and books were, for the most part, soft, sweet and seasonal.

Flynn landed in North Carolina when her husband, Phil Crone, who works in the computer software industry, was transferred to Raleigh in 1993.

She continued to freelance, but over time her regular clients all but vanished with the economic downturn. She was miserable.

Flynn isn’t sure what led her to make her first robot.

Fobots having fun

“We had all this junk in the basement, and it inspired me,” she said. She had collected most of the items at flea markets to potentially use for theater props. She and Crone have been involved in community theater, working with Raleigh Little Theater, Theater in the Park, the Actors Comedy Lab and others.

“Mostly I acted, but I liked to pay my dues backstage by making stuff,” she said.

In the Maine woods, with snow and wine

Here we go! Wessel snowshoes to the hut carrying a backpack and skis

While spring is in the air (yay!), my thoughts are still with the winter wonderland we recently submerged ourselves in at Maine Huts and Trails, near Maine’s western mountains. For now, the four-season system contains 30 miles of trails and two full-service off-the-grid lodges, or “huts.” At some point, it hopes to grow to a dozen lodges covering 180 miles. You can go to one at a time, or hike or ski between them. And, yes, the ski trail is groomed.

I learned about it last year, when one of my professional organizations, the Society of American Travel Writers, gave Maine Huts a Phoenix Award for outstanding conservation efforts. As an awards judge, I read detailed information about the environmental practices, including solar energy, geothermal heating, and composting toilets (love those!). I couldn’t wait to see it for myself.

A glimpse of Flagstaff Lake Hut through the woods. Lodge is more like it

Wessel and I were there the last two days of February for a Washington Post travel story, so I’ll save the details for that. We aren’t strong skiers, so decided to stay at one hut and explore around there instead of attempting to ski 10 miles to the other hut. We chose Flagstaff Lake Hut over Poplar Stream Falls Hut because it’s a flat area. For ski weenies like us (especially me), the cross-country skiing from that lodge was non-life-threatening and sublime.

The hardest part of the weekend was the hour-long schlep in from the car on snowshoes, carrying loaded backpacks with our skis and poles strapped on the back. Agony. Most skiers just ski the 1.7 miles in from the parking lot, but I would have ended up like a turtle on my back, yelling at Wessel to please roll me over and set me upright again.

Diane skis over bridge across creek

We were lucky to have nice temps (high 30s!) with fresh snow both nights, so the mornings before the meltdown were transformative. The world was all white, with snow weighing down the branches and covering the ground. We had a blast skiing on the gentle trail that runs along the lake, which, in the summer, you can swim in. Closer to the lodge, we snowshoed out to a piece of land jutting into the lake. Dunes of wind-swept snow rose along the banks and a white backdrop shone as far as the eye could see. Sublime.

Beauty from the banks of Flagstaff Lake

The cost is about $75 a person per night for a private room and a yummy breakfast and dinner. As of this winter, the huts can also serve beer and wine. Woo-hoo! The rooms range from three beds to family size and are pretty stark, but staying inside isn’t the point here. While I think anytime but mud season or black-fly season would be a draw, if you can come when there’s snow, you will be enchanted. That’s a promise.