Grounded by unwavering love
Husband has been by wife’s side through her 20 years with MS
Paul Bacakos adjusts his wife’s legs, one baring a large scar that travels down her right shin — a reminder of the many arduous surgeries she has been through.
“How’s that, baby,” he says, her wincing face slowly relaxing. “Better?”
Mary Bacakos rests beside him in a bed at St. Michael’s Hospital. Around her neck is a small fan that cools her face, which turns red when she’s in pain.
Mary, 56, has had multiple sclerosis, an incurable condition, for almost as long as the pair have been married. For the past 20 years, uncertainty has often cropped up in their lives. They’ve lived separately for most of their marriage, and her switching between hospitals and care centres has exacerbated things.
Mary was recently diagnosed with colon cancer and underwent surgery at St. Michael’s to have a tumour removed. Her health is currently stable, says Paul, 60.
Paul oscillates between happiness and sorrow as he discusses the ups and downs they have grappled with during Mary’s long illness. Keeping them grounded, however, is their unwavering love for each other.
One in 340 Canadians has MS, an autoimmune disease of the central nervous system. It’s unpredictable and can cause extreme fatigue, lack of co-ordination, weakness, cognitive impairment and vision problems, among other symptoms.
Mary’s MS is severe. She’s had seizures and her vision blurs at times.
“MS is a disease that affects not only individuals, but also families and loved ones,” said Jennifer Asselin, a spokesperson from the MS Society of Canada.
Paul and Mary met at a coffee shop in the early ’80s, became fast friends and started courting. When Paul’s mother broke her knee, Mary stepped in to help and wash her hair.
“I thought, if she can do things for me and now my family as well, she’s a keeper,” he said. “She’s a caring person.”
The two were married in 1992. About five years later, Paul remembers coming home from work to find Mary swaying.
The next morning, a doctor looked at her eyes and determined she had a symptom of MS.
The disease attacked Mary’s system — fast. Within four weeks of being diagnosed, she had a seizure and lost the ability to walk. She’s used a wheelchair since then. Around the same time, Paul was laid off from his job as an auto-parts counter person.
“I was in a rage,” he said, as it was time of high anxiety not knowing how her illness would progress.
Over the next year, doctors treated her as best they could, Paul said, adding the disease eventually went into remission. In 1998, Mary entered the Toronto Grace Health Centre, a 199-bed facility that specializes in health care for multi-faceted chronic diseases and offers spiritual, recreational and therapy services. Through rehab, she was able to use a walker and was able to go home.
But in October 1999, another seizure occurred, resetting the process. She later returned to the Grace, which has since become Mary’s surrogate home.
“They’re aware of the chronic-type illnesses,” Paul said. “They know how to treat them, whereas a lot of the other places don’t.”
For two decades, Mary has been in and out of the Grace as her condition often means lining up care at other facilities. This has taken a toll on the couple over the years, as Mary has bounced from chronic care to acute care and back. She has been in at least six hospitals and health centres — circumstances that don’t get any easier with time, Paul said.
Mary was featured in a 2010 Star story when the Grace was threatened with closure, caused by the Salvation Army’s intention of backing out from owning the centre. This position was later reversed and the charity is currently at the helm.
“These people are family,” Paul said, mirroring what Mary told a Star reporter nearly eight years ago.
“The fact that Mary has been here for almost half her life plays a big emotional part,” he continued. “They were always there for me, always there through difficult times, concerned that I don’t burn myself out.”
During these transitions, Paul has done whatever he can to be with Mary, who moved back to the Grace earlier this month after being discharged from St. Mike’s.
“My angel . . . He’d do anything for anybody, but he’d do more for me.” MARY BACAKOS PATIENT WITH MULTIPLE SCLEROSIS
“See the way I’m dressed right now? That’s the way I went to bed last night. I have an overnight bag I’ve kept in my truck for over 20 years,” he said, adding he often spends the night at the hospital, curling up at the edge of the bed or on a nearby chair.
When he’s not at the Grace, Paul gets up at 4 a.m. and drives to Brampton from midtown Toronto, where he works as an auto parts salesperson. After his shift, he stops at home to check on his 91-year-old father, Louis Bacakos, whose health is declining. Paul cooks, cleans and ensures his father takes his medication. He then makes his way downtown to be with Mary.
There, Paul helps Mary, too, beyond emotional support. He washes her hair, gets her dressed, positions the bed pan and helps her get to and from bed.
“Everybody thinks you just sit beside the bed and keep her company,” he said. “Sometimes it can be a lot of work. It gets tiring.”
He said the process makes him feel like a robot.
“It gets to the point where I know it’s hurting my health,” he said. “I don’t know how I do it sometimes . . . but I find it odd that someone wouldn’t do that for someone they care about.”
Levity and the support of friends helps keep despair at bay, Paul said.
“The health system, I’ve just been thankful they’ve been able to help her,” he continued. “They’ve kept her around for 20 more years. I can see her smile, I can talk to her. I can do this all day.”
Despite the emotional strain that’s tied to the illness, Paul and Mary light up when they see each other.
“When she’s everything, I haven’t given up nothing,” Paul said, referring to the hectic schedule he balances to help take care of Mary.
“My angel,” Mary said. “He’d do anything for anybody, but he’d do more for me.”