Matt's Place a shrine to friendship and caring
By Robin Connolly
Wednesday, January 31, 2007
The Daily Item
They gave him six months to live. Matt Eddy, 29, took what he wanted.
He "drove them crazy" in the rehabilitation hospital - organizing wheelchair races, hiding the nurses blood pressure cuffs, and singing (and mock drumming) in the quiet of hospital halls at night, "Nobody sleeps in the house tonight."
"Yes," quips Matt Eddy, confined to a wheelchair since the age of 10 and the advance of Duchenes Muscular Dystrophy (the most common and most severe form of the disease). "I wasn't a favorite."
He was - just over six years ago - after unsuccessful attempts to wean him from the trach-tube and ventilator that saved his life, deemed "chronic" and waiting for placement in a nursing home or state hospital.
"That's when I met Ron (Steenbruggen)," the without-stop, wise-cracking Eddy says of the Shaughnessey-Kaplan Rehabilitation Center respiratory therapist who helped him set up an apartment, and when it didn't work, bought a house, rehabbed it and stayed with him.
"He felt sorry for me," the fiercely independent Eddy says. "I keep telling him to go away, but he won't."
He will, Steenbruggen says, when there are places for those like his friend to go that don't equal "a death sentence."
"It's the truth," the father of three grown children says of affection for this particular patient that came, initially, when he "looked at my kids, and what they have to look forward to, and heard what they wanted for Matt. This is a great, spirited kid, full of life. How could I just walk away? I couldn't."
He couldn't, and still can't, accept the reality for patients, like Matt, adults with few options than institutionalized living.
"We started Matt's Place," he says, of the joint charity effort, "to finish what we've started and move to group housing with a pool of PCAs and inhouse medical assist."
It's a venture, both say, in its infant stage that already has believers. Among them is a friend in a state hospital who "hasn't had a shower in 10 years. He gets sponge baths because it's too hard the other way."
It's the way, the right way, they say found here with a bed/bath setup to accommodate a wheelchair/ventilator, that's dignified.
"Do I get depressed?" Eddy echoes with his description of an "up, then down" life. "Not really. I don't allow myself."
He does, he says, without apology, get angry.
"Oh, do I," he says, remembering the medical person who, despite his objection, removed his ventilator tube leaving him unable to breathe. "I told her not to do it, and she did anyway."
He told a series of personal care assistants not to steal from him, or abuse him, but that, too, didn't work.
"It's tough sometimes," says the fighter, well at the top of the statistical survival rate for Duchenes, "but what are you going to do?"
They do what they need to do, the respiratory therapist and the Pink Floyd fan, who sports multiple earrings and "at least five tattoos," including, Matt admits, one of "The Transformers" of 1980s television.
"I know. I know," he jokes, "but I think it's because it was one of the few positives of my childhood."
The positives now include Ron, girlfriend Robyn Powell, who also suffers from muscular disease, is in a wheelchair and in her third year at Suffolk Law School, personal care assistant Jade Saelee, Boston Terriers Daisy and Maia, and "Matt's Place's" first fundraiser.
"It's at Giggles on Route 1," this group offers, "and it's on March 15. We would love for everybody to do whatever they can."
Matt Eddy does and will continue to do so. Make a donation. Make a promise or prediction. Matt Eddy can take it. He has a track record that says so.