‘He had such a strong spirit to live’
LIFELINES Door was always open at Paul MacDougall Jr.’s Even confined to bed, he made ‘so much of life’
Paul MacDougall Jr. had Duchenne’s — a killer, a muscular dystrophy that shows up in about one in 3,500 young men, never girls, when they are just toddlers and the one that takes most of them in their teens or 20s.
MacDougall was 11 days shy of 31 when he died Aug. 18 — and he lived larger than most.
Red-blooded, fun-loving, he loved rock ’ n’ roll; parties anytime, anywhere but especially at the Grey Cup and Super Bowl; sports; and women, lots of ’ em.
For his 16th birthday, he asked for and got a hooker. Same for his 17th, 18th, 19th, 20th and 21st. After that, his father said with a laugh, he was on his own. And with his blazing blue eyes, crooked grin, long dark hair and the kind of personality that attracted people like bees to honey, he did just fine. “When he was 13 or 14, he joined the Canadian Electric Wheelchair Hockey Association,” said his father. “ He met a lot of girls there.”
“ I always thought Pauly was kind of a cool dude,” said Angie Bebee- Wright, who played on a couple of his teams as well as against him. “ He was a digger. If the ball was in the corner, that’s where you’d find Pauly. He was aggressive as a player. He hit hard. Then he’d give you a wink, a grin and carry on.”
“ When I played against Pauly, he made me laugh. He would make faces. I was only able to score against him once,” said Gwen Reid, who was engaged to Paul Jr., until they realized they were better as friends.
“ Pizza and beer nights, talking to teammates during the game, whole audiences screaming ‘ Go’ — it’s such a lot of fun,” she said. League electric wheelchair hockey has been going since the late ’ 70s and the players, young men and women who all suffer from a neurological disorder such as cerebral palsy, spina bifida, brittle bone disease or Parkinson’s, are graded into five categories based on ability. The top is being able to hold a stick on your own and take a shot; the lowest category can do neither. MacDougall started as a category two forward and ended up playing as four, the second lowest level.
“[ Electric wheelchair hockey] was the best thing that happened to him and to his family. About 50 of us were at the banquet every year,” said Paul Sr., who has been a volunteer with the organization for about 17 years and coached his son’s team for five years. Paul Jr. could talk pretty well anyone into anything and he talked his Dad into coaching, later into fundraising for the association. MacDougall’s half brother, Clayton Thomas, 20, now coaches the Dragons.
“ I do it because it gave me an extra day with Pauly,” he said.
MacDougall was never a star player. He lost a lot of muscle control one summer early on in his hockey career and when he was 18, a friend came right at him during a game and flipped him in his chair. He broke his arm and could never hold a stick again. The friend was an angry young man, furious at his fate. “And you know what?” said Paul Sr. “ He forgave him. Pauly was never bitter. He just loved life totally.” As a kid, he would be strapped onto his father’s motorcycle and the two would ride through the bush at the cottage, where he used to go for boat rides. His parents separated when he was 8, but he was adored by both his mother’s and father’s new families.
Paul Jr. was the kid from Sunny View public school chosen to present then prime minister Brian Mulroney with a bouquet of flowers. There were family vacations in Jamaica and California to see the Olympics and a deep- sea fishing trip from the Children’s Wish Foundation to Hawaii. His dad gave him a wheelchair- accessible ’ 76 black van for his 16th birthday, in which, he said, Paul Jr., and one of his cousins used to cruise town “ picking up girls together.” He graduated from Sir William Osler high school, moved into a facility to learn to live independently and at 21 got a place of his own at Kingston Rd. and Main St. in the Beach. He was busy all the time, visiting his buddies, hitting the boardwalk, catching his favourite heavy metal groups at the Air Canada Centre and the Argos at the SkyDome. His door was always open; night or day. Everybody always ended up at MacDougall’s place.
“ It gave him a life he never would have had,” said his mother, April Thomas. “ He got to live independently and grow up. It was as close to a real life as he could have had.” But his illness was also progressing. He was always in and out of hospitals. At 12, like most young men with Duchenne’s, he had a steel rod put in his back to stop his spine from curving inward and crushing his lungs and heart. He was never able to sit comfortably again. About four years ago, he suddenly dropped 40 pounds, the veins in his lungs becoming as brittle as an 80year- old’s.
In hospital, he had to be vented with a feeding tube, which most people never get off. He did.
“ He had a mind of his own,” said April Thomas.
Paul Jr. knew exactly what he was up against. His friends had started dying at 23, 24. He lost his best friend, Clint McMann, four years ago but he fought hard against the inevitable, refusing three times to get a tracheotomy to help his breathing, changing his mind at the very last minute on the operating table. To him it was the last resort, a sign the end was near.
In 2002, it was done as emergency surgery. He had been rushed to hospital and after the surgery was in a coma for four days. His family feared the worst, but when he awoke from the coma, “ it was the same old Pauly,” as his father put it. It was another 18 months before he was able to go back to his apartment, where he needed nursing care seven days a week and spent most of his time in bed. But he worked his world from there, phoning friends and family up to five times a day, and planning outings to concerts.
“ It’s amazing how somebody can make so much of life from bed,” said his mother.
“ He once told me he was going to live to be in his 40s and I believed him,” said his mother. “ He had such a strong spirit to live and be alive. . . I will never see such determination again.” Catherine Dunphy can be reached at cdunphy@thestar.ca