A special remembrance for SFU piper
On Sunday night, Derek Milloy celebrated the two great loves of his life. It was bittersweet.
At a concert by the SFU Pipe Band at The Vogue theatre, Milloy was presented with the Opal Award for Caregivers by the Multiple Sclerosis Society in recognition of the 20 years of devoted care he gave to his wife Darleen as she battled MS. The autoimmune disease of the nervous system took her ability to play the bagpipes, then her mobility and last May, it took her life.
Through those years of struggle, tears and uncertainty, Derek and Darleen were buoyed by their shared love for each other and for the pipes.
Those loves were intertwined.
They met playing the pipes. They courted playing the pipes. And when Darleen was diagnosed shortly after they were engaged to be married, they sought strength and normalcy with the pipes.
Darleen was a member of the SFU Pipe Band and a champion solo piper when Derek arrived at the Burnaby Mountain campus to study philosophy and, perhaps more importantly, play the bagpipes with the renowned band he'd heard so much about in piping circles in his native Minnesota.
They hit it off and became an item. That was in 1988.
But already the insidious tingle of MS had inflicted its presence. A year earlier Darleen awoke one morning and couldn't see out of one of her eyes. The vision came back and her doctor couldn't pin down a cause. Still, she won the B.C. Pipers' MacCrimmon Calm and the silver medal at the Northern Meeting in Scotland.
Over the next five years there were other symptoms, mostly minor. In 1992, a series of tests including an MRI confirmed a diagnosis of MS. On the way home from getting the news from her neurologist, Darleen's fingers started to tingle, yet another manifestation of the disease.
Undeterred, Derek asked Darleen to become his wife.
"We didn't know how the disease would progress. It could be one symptom or it could get even worse," says Derek, who's now a teacher at Douglas Road elementary school. "But it was never scary enough to throw away the wonderful relationship we had."
Already the disease was robbing Darleen of her ability to play the pipes, as her fingers could no longer stay steady over the holes that form the notes. But she remained actively involved with the instrument she'd first yearned to play when she was only three years old by teaching and judging at competitions.
"She just loved it so much," says Derek. "Not being able to play was frustrating for her."
By the time they were married in 1993, Darleen was having trouble with her balance. She had to stop working as an accountant. A year later she started using a wheelchair and gave up driving.
But that didn't keep her from attending the pipe band's practices and performances, sending Derek and their friends in the band off with words of encouragement when they traveled to concerts or international competitions.
"The band kept us busy. They were our social network and a huge support for her," says Derek. "It was great that they also included Darleen."
Eventually even that became increasingly difficult as her mobility and ability to communicate declined.
But neither Darleen nor Derek let the disease diminish their spirit.
"People loved spending time with her," says Derek. "She was bubbly and personable. She had a sparkle in her eyes."
Derek just learned to roll with the punches.
"I couldn't worry about things I couldn't do anything about," he says. "I just had to take it as it comes."
With the help of family, friends and support workers, Derek was able to keep up his commitment to the pipe band. When he returned from yet another championship performance, Darleen shared in the pride and joy.
The couple often went for walks near their Burnaby home, Derek pushing Darleen in her wheelchair along the bumpy pavement to a favourite spot at the duck pond by the clubhouse at Burnaby Mountain Golf Course. A bench and yellowbird magnolia tree now memorialize their peaceful place of refuge.
"Simple things made such a difference to us," says Derek.
Shortly before she passed away, Derek and Darleen participated in the annual MS Walk that raises money for research to find a cure as well as provide support to those afflicted with the disease. It was the least they could do for the years of help, guidance and equipment they'd received from the MS Society.
"It's a little way to say thank you," says Derek, who plans to continue his involvement with the walk and other MS Society events.
Sunday, it was the MS Society's turn to say thanks.
This years Vancouver Scotiabank MS Walk takes place on April 29th, starting at 8 a.m. in Ceperley Park in Stanley Park. There is a 3 km and 5 km route, both of which are accessible to scooters and wheelchairs. For more go to www.mswalks.ca