Megan Jennings rarely sits still at MDA summer camp. The 15-year-old is always on the move, nosing her wheelchair around her cabin’s porch singing along to “Grease,” or zipping over to the arts and crafts cabin to work on her costume for the dance, or playing hide-and-seek in the flat, lightly forested, shady spaces near the cabins.
|*Note: It's possible that Megan's ahshwa" comes from the French expression "au choix," which means "by choice." Or, perhaps it refers to another French term, "à joie," meaning "with joy."|
If she does sit still, say while watching a power soccer game, playing cards or waiting to get into the pool, she restlessly powers her wheelchair footrest up and down, backscratcher in hand like a royal scepter.
Nighttime is Megan’s favorite time to get around. In the July darkness outside Columbia, S.C., she roams Camp Burnt Gin doing what she calls ahshwa walking, which she says comes from a French expression she heard once that means to wander without a plan.*
“It’s a very relaxing way to cool off,” she explains in her gentle drawl, adding, “I have a tendency of being a minimom. I like going around to all the cabins saying ‘g’night y’all.’”
There are really no opportunities for “ahshwa walking” back home in West Columbia, S.C., where Megan, who has spinal muscular atrophy (SMA), is an active high school student interested in everything from ballet to wrestling. As for having the freedom to simply do what she wants, when she wants — well as they say, that’s priceless.
That’s what MDA camp means to kids — freedom from barriers, regular life and being different. Camp also means being surrounded by a caring, goofy team of grown-up kids (MDA counselors and other volunteers) who have a blast making sure each camper has the best week of his or her year.
An addicting habit
|Kelli Prather hopes for a strike, with encouragement from Fat Rat, aka Matt Lam.|
|Morgan Harrell has been Megan Jennings’ counselor for the past eight years.|
The MDA summer camp program, which celebrated its 50th anniversary last year, serves some 4,200 kids with neuromuscular diseases ages 6-21, in some 90 free weeklong summer camp sessions every year. More than 5,000 older teens and adults serve as camp volunteers, including about 300 medical staff. MDA staff and counselors assure that camp activities are accessible and safe for all.
Each camper is assigned a personal counselor who attends to the camper’s needs 24/7, from the personal and practical to the wacky and frivolous.
You need someone to turn you over at night and figure out how to transfer you into the pool without causing any discomfort? You want somebody’s bed suspended from the cabin rafters? Someone to cover themselves in peanut butter and let you spit peanuts on them? Call an MDA camp counselor.
To qualify, counselors must be at least 16 years old and physically able to lift and care for campers.
Volunteers are thoroughly screened — including criminal background checks, health and reference checks, and personal interviews — and provided with training in helping children with neuromuscular diseases.
Megan’s counselor for the past eight years has been Morgan Harrell of Columbia. Most of the year, Morgan works for South Carolina Gov. Mark Sanford. Five days a year, she’s Megan’s arms and legs and partner-in-crime.
“You can’t do without it. It gets in your blood,” explains Morgan in the rec room/cafeteria during the 2005 camp, where campers are bowling, hanging out and listening to a CD by local singer Jim Le Blanc, who performs at camp every year. Other counselors, some of whom have been volunteering at Columbia’s MDA camp for more than 30 years, emphatically agree.
Matt Lam, or “Fat Rat,” a Columbia fire fighter, voices a common sentiment: “I’d lose my job before I’d miss camp.” Other counselors confess they’ve already done so.
And the winner is...
|Counselors Ricky Northcutt and Jessica Milam gamely endure being slopped by the Bad Egg.|
At times, MDA camp involves large quantities of disgusting goo.
Kelli Prather, 9, of North Augusta, learns this firsthand while playing the Bad Egg. (Kelli, a first-year camper, has SMA type 2.)
The Bad Egg isn’t really an egg, but it is bad. Two hollowed-out watermelons painted white are filled by campers with such delights as turkey gizzards, Alpo, salsa, pudding, syrup, ravioli, watermelon innards, sweet and sour sauce, ketchup, relish, green beans and ranch dressing. Yum.
The Bad Eggs are prizes for the boy and girl winners of an Easter egg hunt (the camp’s weeklong theme in 2005 was “holidays”). The winners each select a counselor to get a Bad Egg dumped on his or her head.
As the girl winner, Kelli picks counselor Ricky Northcutt, an easygoing practical joker from Cayce, S.C., who sells tow trucks most of the year. Ricky, who’s been coming to camp for 23 years, suffers the putrid splash and then, dripping and grinning devilishly, heads over to give Kelli a big congratulations smooch.
Kelli’s counselor, Ashlea Osbourne of Kennesaw, Ga., quickly throws a tarp over Kelli, protecting her chair. Ee-yew. Gross.
Kelli thinks that’s the end — except in Ricky’s mind, payback isn’t over. The next day, Kelli finds her bed and rocking chair suspended in the rafters of her cabin, with her stuffed animal still sitting in the chair exactly as she left it.
She stares silently upward, dumbfounded. “Um, may I ask a question?” she finally says politely. “Do I have to sleep up there?”
A place to grow up
|Camp nurse Jenna Livingston dances with camper Levonne Croker, 13, of Cades, S.C. Levonne has Duchenne muscular dystrophy.|
Megan is delighted by Kelli’s Bad Egg experience (which she helped engineer), because she knows this is the kind of thing that bonds kids to camp. She frets a little about kids she meets at MDA events during the year who’ve never tried MDA camp.
“I keep working on kids to come, but they won’t,” she says. Some of their reticence may be due to fear of homesickness, although that quickly passes, she says. “And I guess it can be a little overwhelming, having all these people and all these (power) chairs around.”
But a normal, healthy part of growing up is separating from your parents, advises Arden Peters, a psychologist who ran MDA family support groups in Wichita, Kan. Beyond all the silliness and goo, camp stretches kids and helps them grow in confidence and self-esteem.
Plus, it’s a good tool for learning to handle disability and finding support. “Kids at MDA camp open up to each other in ways they won’t with anyone else,” Peters noted.
Explanations about the psychological benefits of camp are lost on Jeremy Susenbach, 7, of Hickory, N.C.
Jeremy, who has Becker muscular dystrophy, and the other boys in his cabin roam the camp as a pack, bristling with water guns, accompanied by counselor-drawn wagons for those whose legs get tired.
“The little boys all travel in a mob and we just kind of do zone defense,” explains counselor Jo Ellen Aspinwall of Offerman, Ga.
But their little boy bravado gets a serious test at one of the major events of camp: the Dance. This year (as every year) the dance hall has been transformed by the biggest grown-up kids around, Charleston builder Andy Beall and his brother Thomas (aka Zombie).
|Camper Eric Trofatter, left, and volunteer Thomas Beall (aka Zombie) check out progress on the haunted house exterior.|
Each year the Beall brothers load up a trailer with thousands of dollars worth of decorations, all bought at their own expense. They then spend days sequestered mysteriously inside a cabin, tacking up black plastic sheeting, spray painting and assembling props.
In the past they’ve created a beach scene complete with buried treasure; a ghost pirate ship (like “Pirates of the Caribbean”); an exploding volcano; and 12-foot-high ants for the “A Bug’s Life” theme.
This year’s dance theme is Halloween, and the haunted house the Bealls have created is of Disney caliber.
Jeremy and his best buddy, Zachary Griffin, 7, of Rock Hill, S.C., who has Duchenne MD — respectively costumed as Spiderman and the Incredible Hulk — cling to the legs of counselor Chip Raffine of Columbia. As Chip tries to move forward, the little boys — sorry, superheroes — shuffle hesitantly behind him, their eyes pasted wide open.
Inside, the scene is fantastic: mechanical skeletons, screaming zombies, severed limbs, giant cobwebs, rubber rats and a loud bouncy Halloween music track run by volunteer deejays Robert and April Elwood, who cut short their vacation in order to be at the dance.
Scary but fun
Quickly, Spiderman and the Hulk get over their fear, release their stranglehold on Chip’s legs and start grooving to the beat. Michael “Fast Freddy” Schleenbaker, 14, of Clark Hill, S.C. (who has SMA and cerebral palsy), wears a grin so wide it threatens to swallow his face. He stamps his feet and rocks in his chair, dancing with Nikki Nirenberg, 21, of Columbia (Charcot-Marie-Tooth disease).
|Brave (on the outside anyway) superheroes Zachary Griffin, left, and Jeremy Susenbach are ready for the dance.|
Josh Bush, 15, of North Ellenton, S.C., who has an unspecified muscle disease, is decked out in white, with a cape, a Three Stooges tie and an eight-ball walking stick. He tosses plastic butterflies to girls to invite them to dance.
Morgan, the Bride of Frankenstein, begins a dance called the Train and power chairs circle the floor, punctuated by “woo-woo” cries. During the costume judging, Megan wins $50 for her power chair version of Cousin It from the Addams Family. (The prizes, which this year include a game cube and personal DVD players, are donated by a camp volunteer.)
Meanwhile over in the cafeteria, Kelli, in a ghost costume, sits quietly playing cards with Ashlea. The haunted house was a little too much for her, but she’s feeling better now after a quick call to Mom.
“Now don’t you think you’re not coming back next year,” orders Ashlea.
“I know,” says Kelli, and smiles happily. “I will.”