Thalidomide survivor Daniel Scheidt with his wife Carollyne outside their trailer in West Kelowna, B.C. on June 14, 2016. He has seen a turnaround in his life ever since Ottawa delivered on its financial support package last year. He went from being a shut-in to someone who finally left his house and started to enjoy life again. Thanks to the money, the couple was able to buy a new home in Hope, B.C., where they'll be moving in mid-July. (Jeff Bassett for the Globe and Mail)The Globe and Mail
On a bright April morning, Daniel Scheidt awoke in the shadowy darkness of his mobile home and decided to do something he had not done in over three years. He asked his wife to open the curtains, then told her he wanted to go out.
"What?" Carollyne Scheidt said, barely believing her ears.
For over three years, Mr. Scheidt had lived as a near recluse, seeing no one, venturing nowhere. Laid off from his electrical engineering job, he sank into a depression and cursed the pain that came from being born maimed by the drug thalidomide.
But that morning last year in West Kelowna, B.C., something transformative was under way. A day earlier, Mr. Scheidt received a $125,000 cheque from the federal government as part of its historic settlement with the country's nearly 100 thalidomide survivors.
With a single gesture, Mr. Scheidt felt his country was recognizing him, and he was ready to face his country again.
"I was dragged out from a very deep, dark hole I was going into," the 54-year-old said. "I'd been worried about how we were going to survive. [The settlement] brought me back to do things, enjoy things again."
The turnaround illustrates the life-altering impact of Ottawa's $180-million agreement with members of the Thalidomide Victims Association of Canada, who gather in the National Capital region starting Friday to mark the success of the group's compensation campaign.
Before the federal deal was announced, Mr. Scheidt had cashed in his savings and was so worried about his financial future, he believed he'd soon be "living under a bridge somewhere." But as the curtains of his home parted, Mr. Scheidt looked out at the birdbath in the yard and the cottonwood trees and Mount Boucherie beyond, and saw possibilities again.
"It was like a rebirth. His whole life opened up," Ms. Scheidt said. "Before, he had shut the door on the world. He fell through the cracks and felt nobody cared. When the [cheque] arrived, he could see the light at the end of the tunnel. Now, he laughs every day. He's got a future. The government gave him his life back."
The effect of Ottawa's package is being felt across Canada, where survivors are investing in everything from home care to new homes. In La Pocatière, Que., the deal let Nelson Emond dream about a life beyond the walls of his semi-basement apartment that had limited him for eight years.
Mr. Emond's mother took thalidomide after Ottawa approved the drug in 1961 on the faith of the manufacturer's pitch that it was safe for pregnant women. Mr. Emond was among the babies born with rare and severe deformities, including missing limbs and internal organ damage. It was Canada's most notorious drug scandal, and last year, Ottawa agreed to pay its victims single lump-sum payments of $125,000, along with pensions of $25,000 to $100,000 a year.
Mr. Emond, born with most of his legs missing, had been living in a 4 1/2-room rental apartment too cramped to accommodate his wheelchair. A positive, amiable man who worked in various jobs as long as he was able, had to manoeuvre around his apartment on his leg stumps, so worn that their tips had become dark and calloused. Every time Mr. Emond wanted to go outside – even to take out the garbage or pick up his mail – he had to pull on his artificial legs to climb the five steps out of his apartment.
In mid-May, Mr. Emond left the semi-basement for the last time. With the help of friends and family, he moved his belongings into a new single-family house a short drive away. It has a garage so Mr. Emond won't have to depend on the goodwill of a stranger to dig out his car in winter, and a deck where he can breathe the outdoor air. Mr. Emond could not hide his excitement.
"I had always dreamed of having a house," said Mr. Emond, who has also suffered thalidomide-induced damage to his eyes and partial paralysis to his face that gives it a mask-like appearance. "But if I could buy one now, it's because of the federal funds. It's changed the stakes completely. It's giving me the freedom to do things I couldn't before."
His father, Albert, watched his son in the kitchen of the new home with a pinch of emotion. The parents of thalidomide babies saw their children overcome obstacle after obstacle through the years. Aging themselves, the parents view the federal settlement with a sense of deep relief.
"I'm 72 years old. Maybe I won't have many years left to live," the elder Mr. Emond said as a contractor took measurements of the bathtub to adapt it to his son's needs. "I won't die worrying whether or not he'll have the money to look after himself. I know he'll be protected for the rest of his life."
The pain and confusion of the birth of Canada's thalidomide babies in the early 1960s remains vivid for their parents, who had little support or information about what was, then, a shocking event. Until then, many never imagined that medicine could cause so much harm to an unborn child.
Mr. Emond gets tears in his eyes recalling the sacrifices to get his son cared for, how he sold his car to buy him prosthetics in the days before Medicare. In 1963, Canada's health minister, Jay Waldo Monteith, vowed that Ottawa would care for the country's thalidomide victims "in the best possible manner." That promise was unfulfilled until last year. "Why did it take 50 years to recognize their mistakes?" Albert Emond asked.
In 1961, Paula Finlayson was a nurse in her early 20s working the night shift in an Edmonton hospital when, exhausted, she felt desperate to get some sleep. An intern offered her a new drug. "Take this, it's a good sedative," he said. Ms. Finlayson took a single tablet of thalidomide on each of the two nights remaining in her shift. She had no idea she was pregnant.
Her son, Brian, was born with shortened arms. "If I hadn't done it, Brian would still have arms," Ms. Finlayson, 76, said recently from Edmonton. "I still take personal responsibility for swallowing those two pills." Like many other parents, she, too, survived the thalidomide tragedy in history's shadow, carrying a lifelong burden for a fiasco caused by drug makers and government.
She plans to travel to the Ottawa-area gathering to meet other families touched by the tragedy, and mark the milestone of the government settlement, which she admits she never thought would come to pass. "It's going to make such a difference in their lives," she said.
No amount of compensation will rewrite the years of neglect for Canadians like Mr. Scheidt or Mr. Emond, but the new funds have offered a measure of comfort as they face an uncertain medical future. "It gave people peace of mind, a sense of security," said Mercédes Benegbi, head of TVAC.
Nowadays, the Scheidts allow themselves occasional luxuries, such as ice cream or Genoa sausage, that they had denied themselves for years. They bought a second-hand camper, leaving their mobile-home enclave to travel again. Earlier this month, after they realized that Mr. Scheidt could no longer manage getting in and out of the bathtub in their mobile home, they put a down-payment on a new house with walk-in showers. It's in the town of Hope, B.C.
The couple has made one other, permanent, change to their home. They keep the curtains open, every day.