Facing down ALS, Sterling man sets sights on ‘finishing strong’
October 3, 2012
“Hi, my name is Dave Murray, and I’m dying of ALS.”
With less than a dozen words, Dave Murray had the undivided attention of Heritage Church’s Celebrate Recovery group.
Heads snapped up, bodies leaned forward, mouths and eyes widened as the Sterling Heights resident spoke of the incurable neuromuscular disease that will progressively rob him of his ability to move, talk, swallow, and eventually, breathe.
When Murray glanced up from his notes and saw people in the crowd crying, he became choked up himself, shaking his head to clear the tears from his glasses so he could finish reading.
“After that meeting, I had a few people tell me that I changed their life,” said Murray. “So you hate having this disease, but there’s some times when you see the joy in somebody’s eyes, and you changed their life — it makes you feel good.”
Delivering a presentation about his impending death is far from the idyllic post-retirement life in Tennessee that Murray imagined he’d be living right now.
“The worst part of it is that you’re losing something every day,” he said. “There’s things that I can’t do now that I did last week. It’s like watching yourself die, in a way, right before your eyes.”
But even as his physical strength ebbs, Murray said his commitment to helping others deepens.
With the Tennessee move on the horizon, Murray — wanting to capitalize on his already-met insurance deductible — sought treatment in July 2010 for his sluggish left hand and arm cramps. He’d chalked it up to age, perhaps a pulled muscle, a pinched nerve.
The seemingly minor ailment turned out to be anything but. As he went through a barrage of tests, the possibilities became increasingly grave.
Before the official diagnosis in February 2011, some symptoms subsided, sending his hopes soaring. But when Murray’s neurologist told him he had amyotrophic lateral sclerosis, “truthfully, I just went into a corner and cried like a baby, and told my wife to listen to her, because I wasn’t going to understand anything,” he said.
Often called Lou Gehrig’s disease, ALS degenerates the muscle-controlling motor neurons in the brain and spinal cord. For most patients, life expectancy is only a few years.
Murray, now 55, feels fortunate that his progression is relatively slow compared with many patients. He’s heard horror stories of people with fully paralyzed arms and feeding tubes within a month of diagnosis.
But life is still changing fast. His hand muscles are deteriorating, and he’s awaiting a voice recognition program so he can “type” on a keyboard hands-free. He eats with specially designed utensils because he can’t clutch most forks. His leg muscles are weakening. A machine aids his breathing while he sleeps.
“The latest … is that my diaphragm’s weakening, and once the diaphragm goes, I go,” he said.
Further complicating his condition: He suffered a heart attack last November and underwent a quadruple bypass in December.
His wife, Sheryl, dresses him, bathes him, handles cooking and cares for the house with assistance from their grown children, Chris and Michelle.
The Murrays have abandoned the Tennessee dreams, opting to remain close to family and friends in Sterling Heights and satisfying their wanderlust with short excursions: Alaska, Niagara Falls, Mackinac Island.
‘As long as I’m vertical’
Just after the diagnosis, Murray and his wife decided to take a two-week “dream trip” to Hawaii that turned out to be serendipitous. There, on a tour with strangers, Murray met a relative of ALS of Michigan President Jay Welford.
After Murray came to terms with his condition and became determined to devote his remaining days to helping others — on multiple fronts — he turned first to ALS of Michigan.
He joined the organization’s board of directors and began raising money for the cause. His upcoming projects include an Oct. 21 bowling fundraiser at Sunnybrook Lanes in Sterling Heights.
Such events are critical for ALS of Michigan, considering the nonprofit raises “every dollar from scratch, every year,” to address the daily living needs of patients and their families, said Executive Director Sue Burstein. Resources provided range from support groups to medical equipment loans.
Murray also signed up for an oral medication clinical trial involving 580 ALS sufferers worldwide, which concludes in mid-October, out of a desire to help find treatments and a cure. In November, he’s slated to receive a diaphragm pacemaker, which is expected to extend the failing muscle’s functionality for a year, via another trial.
And he discovered Heritage Church.
Murray said his initial anger at the diagnosis prompted him to seek out either a psychiatrist or pastor to help him cope. After nearly 30 years away from religion, he and Sheryl were vetting local churches, seeing where they felt comfortable, when a wrong turn led them past Heritage.
Pastor Kevin McCarthy called it “providential” that he happened to be greeting parishioners and delivering the message that morning, which isn’t an everyday occurrence.
As Heritage’s care ministries pastor, McCarthy is responsible for overseeing such programs as Celebrate Recovery, and after developing a friendship with Murray, he enlisted him as a presenter.
That group is primarily addictions and codependency struggles, but McCarthy knew Murray’s story would put members’ problems into perspective.
“It just inspires people,” said McCarthy. “(They think), ‘If he can face that with hope, with faith, with determination, with discipline, I can tackle this.’”
Murray also was one of the catalysts behind Finishing Strong, a new Heritage group for individuals — and their spouses — facing life-threatening, terminal or debilitating conditions, with no prognosis for remission or recovery. Its purpose: sharing comfort, inspiration, resources and prayer among people in similar circumstances.
Thus far, members have met every other Thursday, but they plan to begin convening weekly starting in October. Murray co-leads the group with Lee Kueppers, who has cancer.
Recounting his story, Murray is, by turns, cheerful, tearful and wry, but all with a core of resoluteness.
“As my body dies here, I know it’s getting stronger for God, for eternity,” he said. “But as long as I’m vertical — and maybe still in a wheelchair — I wanted to do something for other people that are depressed and can’t get out of their houses.”
McCarthy considers it a rare gift, as many in Murray’s position would turn inward to cope.
“Dave’s an inspiring guy because he is certainly facing this disease with hope, and he’s become an outwardly focused person, very conscious about leveraging his life, whatever is remaining of it, to influence others, to inspire them and comfort them,” said McCarthy. “I think his goal is to make as big a footprint as he can in the hearts and minds of other people.”
Murray’s bowling fundraiser for ALS of Michigan is Oct. 21 at Sunnybrook Lanes, 7191 E. 17 Mile in Sterling Heights. The cost of $25 per adult and $15 for kids ages 12 and younger includes three games, shoe rentals and food. Raffles and silent auctions will be available. For more information, call ALS of Michigan at (800) 882-5764 or email Murray at firstname.lastname@example.org.
For more information on Finishing Strong, call (586) 977-9490 or visit www.experienceheritage.com.
Murray’s personal journal is online at http://www.caringbridge.org/visit/davemurray.
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