Battling back from a crippling blow
Oakville Beaver photographer Barrie Erskine is fighting to keep the life MS could steal
Angela Blackburn
Published on
May 14, 2008
Oakville Beaver photographer Barrie Erskine is learning to plan for the worst and hope for the best.
He is not focused on which cameras, flashes or gear to bring to an assignment, or whether or not his subject will be camera shy -- but rather his life, and future.
Not quite a year ago, Erskine, an award-winning photographer who was a newlywed with a healthy infant daughter, didn't think for a moment that before his daughter Emily's second birthday, she'd be handing him his cane and that he wouldn't be able to carry her upstairs, in case he fell.
It was early last summer that Erskine began his painful, emotional journey along a path few would care to follow.
Born 41 years ago in Rawdon, north of Montreal, Erskine and his sister, Bonnie, moved to Bowmanville with their parents, John and Lyn, in 1981. The family later came to Oakville when John was transferred to Hamilton.
In 1989, Erskine graduated from Sheridan College's photography program and began working at The Oakville Beaver.
Last July, Erskine was heading home from work one night and stopped by the drug store to purchase skin cream as his hands had been itching.
The pharmacist pointed out a rash on his arms so Erskine headed to a walk-in clinic.
While there, the photographer experienced severe chest pains and was rushed to Joseph Brant Memorial Hospital by ambulance.
"That's what started it all," said the soft-spoken Erskine.
"We could not figure out what was wrong, but Barrie continued to feel worse and worse," said his wife, Melissa, 32.
Over the next weeks, Erskine was tested for West Nile virus, lupus, Lyme disease and more.
In August, he began to develop numbness and tingling in his arm and was becoming weaker daily.
"Just to walk across the street was a chore," said Erskine. "I had to stop numerous times and just rest."
Then, Erskine began losing consciousness and was often disoriented. An internal medicine specialist sent Erskine to a neurologist, which led to an MRI, a diagnosis of a brain lesion and a spinal lumbar puncture.
"It's a very painful procedure," said Erskine, who passed out during the first attempt.
"By the end of September, Barrie was really having trouble walking," said Melissa.
At home, Barrie was losing consciousness and Melissa was trying to catch his fall. He was unsafe and his condition was unsafe for her and their daughter.
"It was a scary time," admits Erskine.
"We took him to OTMH (Oakville-Trafalgar Memorial Hospital) and I basically told the doctor that he wasn't coming home, that they needed to admit him and observe him because we were not getting the answers we needed," said Melissa.
What followed was complete bed rest, more tests, another neurologist, an infectious diseases physician and psychiatrist.
"The psychiatrist said that I had nothing to be depressed about other than what was happening to me," said Erskine.
In the end, the hospital was prepared to discharge Erskine, but Melissa refused to have her husband come home until there was a diagnosis.
The following week, Dr. Jim Kovacs, co-chief of family medicine, sat down with Erskine and numerous diseases were further investigated and ruled out.
By Thanksgiving, the Erskines were told the talented photographer probably had MS, multiple sclerosis.
Diagnosed with Clinically Isolated Syndrome (CIS) -- a definitive MS diagnosis won't be made until more time has passed with evidence of further brain lesions -- Erskine was sent to rehabilitation at the hospital and referred to the MS Society of Halton and the MS clinic in Hamilton.
Erskine began taking a drug used in the treatment of the onset of MS symptoms and his rehabilitation included work with a physiotherapist, speech therapist and occupational therapist.
Then came another big trauma -- going home again.
"It was a hard thing for me to do. I was comfortable in the hospital. I was safe. Going home was a big mental challenge. I didn't have a nurse right at the end of the call button and no physiotherapist right around the corner," said Erskine.
Now, with a cane, sometimes a walker, Erskine is becoming more mobile. He tires easily and works on conserving energy.
Erskine, who enjoys cooking, has even re-organized his kitchen so that he may not tire as easily while preparing food. He still experiences pain in his legs and feet.
"It's like burning and pins and needles and it's like walking on glass," said Erskine, admitting he and his wife have come to not talk about "it" all the time anymore.
He holds his daughter on his knee, but still does not carry her.
"Mentally, it has taken a lot out of us, just because of the not knowing what was going on and then the realization that it is possibly MS," said Erskine.
Going to the MS Clinic -- which has proved invaluable to the Erskines -- was greeted differently by Barrie and Melissa. For him, it was a relief; for her, a grim realization.
"We're at different points of the grieving process," said Erskine.
Melissa had been back at work from maternity leave only two weeks when Erskine fell ill. She has been working, caring for Emily and for her husband. The couple said their extended family is owed a huge debt of gratitude for helping with Emily, with Erskine, and supporting Melissa.
The Erskines believe a virus sparked Erskine's MS attack. Until he has other attacks and more evidence of damage (multiple sclerosis means multiple scars on nerves and Erskine describes it as your own body attacking itself and the resulting damage short-circuited nerves), a definitive MS diagnosis won't be forthcoming.
He is on medication that aims to inhibit more attacks, and as Erskine said, he has a lot to live for and does not want to risk it -- or the damage that could result.
"I had a choice to go on the medication. If I did not and things progressed, I would be kicking myself. I have a young daughter, it will be three years in July that we were married, I've got a lot to live for, I don't want to be in a wheelchair quickly," he said.
Erskine takes Avonex, used in Canada since 2003 to treat those who have had a single event suggestive of MS (CIS), to delay the onset of clinically definite MS. More than 80 per cent of CIS patients develop MS.
Identifying the 80 per cent is important since evidence suggests starting disease-modifying therapies early improves outcomes. Erskine has lost his driver's licence and hasn't picked up a camera -- due to both lack of interest and strength -- in some time. He hopes to regain use of both soon.
"I'm starting to think about it again and hoping to get back to work," said Erskine, who continues going to the YMCA of Oakville as rehabilitation.
"I want to be there for my daughter. I want to be able to pick her up and hold her," said Erskine, who still battles pain, fatigue and, when he tires, one side of his body droops as though he has had a stroke.
"We can't really plan," said Melissa. They do not know on which day Erskine may have another attack and what damage will result. The future is unknown.
"People need to be advocates for themselves," said Melissa. "We really had to push and that's really hard when you're in a crisis."
Since the Erskines' lives are settling, Barrie participated in a recent MS fundraising walk (starting on foot, riding a scooter, then finishing on foot, which he said was psychologically important) and are helping promote MS Awareness.
In the midst of it all however, on Friday, Erskine had another episode of difficulty walking. He remains at home, on medical treatment, and while coping with what appears to be another attack, is wondering if this will lead to a definitive MS diagnosis.
The fourth annual MS Golf for a Cure will be at Crosswinds Golf and Country Club in Burlington on Wednesday, June 18. Proceeds benefit the Halton MS Chapter. Contact Robin Halliwell at the MS Society-Halton at 905-681-1166 or robin.halliwell@mssociety.ca.