|Jon Whitmer / Photo by Pat Whitmer|
Dive into ‘Charlie’s Lake’
An independent documentary film following the daily life of one family in Billings, Mont., affected by Duchenne muscular dystrophy (DMD), is airing on Public Broadcasting Service channels across the country and will continue through April 2010.
Named after a favorite fishing spot, “Charlie’s Lake” tells the story of Jon Whitmer (who died in 2005 at age 33 while the film was being edited) and his refusal to let obstacles stand in his way.
Check with your local PBS station to see when the film is scheduled to air. (For a Quest article on Jon Whitmer, see “Five for Freedom,” September-October 2002.)
Read all about it
Co-edited by San Francisco resident Karen Myers, who has facioscapulohumeral muscular dystrophy (FSHD), My Body of Knowledge: Stories of Illness, Disability, Healing, and Life is a compilation of poetry, fiction and personal essays written by people with disabilities and chronic illnesses.
Frustrated that there weren’t many articles and books written by people with disabilities, Myers and her friend and co-editor Felicia Ferlin decided to put together a book that would capture the full range of experiences and emotions of living with a disability. Myers, 43, wrote one of the articles in the anthology, called “Step by Step.”
“Our intention was to access the wealth of insight and knowledge that people with disabilities have — simply from living in their bodies — and to share it with others,” says Myers. “We wanted to show that sometimes climbing a flight of stairs is as huge an achievement as climbing a mountain.”
My Body of Knowledge, which was first posted online in 2004, was published three years later by PageFree Publishing and can be ordered through bookstores. The anthology is online.
The chef recommends …
Khris McFarland is into food in a big way. He eats the stuff. He creates recipes for the stuff. He watches scads of food shows on TV.
Maybe that’s why, at 15, he’s already scored more than his allotted 15 minutes of fame.
Khris, who has congenital muscular dystrophy, is known as Chef Khris at Little Anthony’s Diner in his hometown of Tucson, Ariz., because several of his recipes appear on the menu. Diners are now his favorite type of eatery.
|Khris McFarland with a photo of a diner, his favorite type of restaurant.|
At home, he and his father, Ron, had experimented with chili recipes; then a couple of years ago Khris got into the culinary big leagues. When cruising channels on TV he stumbled across “Good Eats” on the Food Network, and that brief introduction was enough to hook him.
Thinking back to one of his first creations, a marinade, he rattles off a few of the ingredients: “Black pepper, ketchup, Worcestershire sauce, molasses, mustard seed … stuff like that.” With limited mobility, he can help stir, but family members usually prepare the combinations according to his directions.
Tongue-searing heat seems to be a regular component in his recipes. His menu items at the diner include Khris’ Dragon Hot Chili Cheese and Fries.
Khris has strong opinions to go with his strong spices. His vinaigrette includes balsamic vinegar, olive oil, garlic powder, salt and pepper, prepared mustard and … of course … cayenne pepper. Khris likes to dip bread into the mixture. He rejected his mother, Linda’s, offer of spinach leaves as “too limp.”
He also suggests ordering a Chicago-style pizza — from Chicago. “If we order it today, it’ll be here by tomorrow,” he reasons.
Khris receives hospice care at home, so he has plenty of time in which to indulge his favorite activities of video games, cooking shows on TV and movies. He’s big on the “classics,” films like “Call of the Wild” and “Where the Red Fern Grows,” along with “Star Wars,” “Lord of the Rings” and “Harry Potter.”
Khris is also fascinated with new cooking gadgets.
If he had one wish, he says, it would be to have an “Extreme Makeover” of the family’s house. “It would have lots of video games and a huge kitchen and a water park.”
“I don’t know how workable it would be to have a water park in the house, sweet pea,” Mom says.
“Hey! This is my wish,” the chef reminds her.