Life with MS: Challenges, losses, but also purpose and 'deep joy'

Originally Published on February 9, 2019

When asked to describe what it's like to live with multiple sclerosis,Elizabeth Rathbun offers a surprising analogy.

"It's like having climate change all bound up in your own body. It's not going to get better. It's going to get worse,"Rathbuntold Dr. Brian Goldman, host ofWhite Coat, Black Art.

"It's not curable and given that it's neurological, [it's] going to affect every functional system of the body ...from muscle weakness, to fatigue to bowel and bladder problems to swallowing issues torespirologyissues. There's not much it doesn't affect."

It may sound bleak, but the 66-year-old Vancouveriteis quick to make clear that she's leading a good life.

"Despite everything that has come to me and my family with MS, I consider myself to live a life that is purposeful and brings deep joy," said Rathbun who hasadvanced secondary progressive MS.

Canada hasone of the highest rates of multiple sclerosis in the world 11 Canadians are diagnosed with the disease every day, according tothe MS Society of Canada.

More than 77,000 Canadians live with the unpredictable and debilitating condition, which affects the chronic nervous system, including the brain, spinal cord and optic nerves.

'I was blind-sided'

Rathbun was 34, and a new motherwhen she was diagnosed, after finding she had a loss of sensation in her fingers, and could no longer tie her shoes without looking at her hands or do up a clasp at the back of her neck.

"I was blind-sided, I didn't know that much about MS," she recalled.

But like many people diagnosed with MS, she was symptom-free for years, "blessed," she says, with a 15-year "break" that allowed her to continue to work in a job she loved as general manager of the Vancouver Chamber Choir, and to have a second child.

But that break also allowed for something else to take seed: A hope, even a belief that the disease might pass her by.

"By 1998 I kind of thought I was home-free. I thought I was just incredibly lucky," she said.

Caregiver relationships are 'a gift'

But in 2001, while out on a run, she found her right foot was dragging.

She knew immediately it was neurological, but the magicalthinking crept in again.

"There was this remarkable, perhaps foolish optimism that ... it would be minor again, perhaps in a new area of the body but that it wouldn't progress."

Instead, she says, "It started and it never stopped. "

"So, from being a healthy 50-year-old who could walk briskly across Hamilton Street in the year 2000 ... I am now a quadriplegic," said Rathbun, who uses a motorized wheelchair and relies on family and full-time caregivers to help her with daily tasks, such as showering, eating, and transferring from her wheelchair.

Rathbun is no longer bothered by needing that help;and in fact, relishes the relationships she has with her caregivers. one of whom stays close by during the interview to offer sips of water when needed.

"My relationships with my caregivers are filled with joy. I am enormously loyal to them. They are smart, intelligent kind resourceful reliable ... It is a relationship that's a gift, and it's a gift I would not have had without this disease."

What you discover about yourself is an enormous capacity for denial.- Elizabeth Rathbun

It took some time to find her way to that acceptance, she admits, because of her continued denial about how the disease was taking hold.

"What you discover about yourself is an enormous capacity for denial. Denial that it's happening. Denial of what the future might hold ... and a tremendous reluctance to give up the ways in which you look after your family, and the ways in which you contribute in the community."

It washarder to dismiss when she could no longer navigate the steps in her familyhome, and was eventually unable to drive.

"I was the daughter of a small bus operator in Ontario. I probably had my licence a week after I turned 16. Driving was a primary activity,"she said, adding that it began with family members telling her not to pick them up at the airport.

"The day I had to cut my driver's licence in half was a big blow."

Battling depression

Those cumulative losses led her to where many with MS find themselves struggling with depression.

"Until I began to get treatment [for the depression]and help that was almost more disabling than the physical symptoms," said Rathbun, who pointed out that she was fortunate compared to those who don't have family support, and other women, who find themselves abandoned after an MS diagnosis.

It was completely news to me that eight to 10 per cent of people with MS develop epileptic seizures in their 60s.- Elizabeth Rathbun

Women are three times more likely to be diagnosed with MS than menand Rathbun says the diagnosis challenges any relationship.

"Each time you think you're there, there's more progression. There's a new development, a new thing to be incorporated in your lives and you start all over again."

That point was driven home in a dramatic fashion,three years ago.

"It was completely news to me that eight to 10 per cent of people with MS develop epileptic seizures in their 60s," she said.

She had two seizures, each lasting 50 minutes. She had to be intubated, a concern because her already weak lung muscles were "put on a holiday"when she was put on a ventilator.

"You can't be confident those lung muscles are going to go back into gear and do their job," she said, adding that she's now on "a lot" of anti-seizure medications.

That time, she says it took 14 hours for her to be weaned successfully off the ventilator. When asked what she would do if she had to remain on a ventilator, leading to the need for a tracheotomy, she admits uncertainty.

"It's been in our minds for three years and I can't give you the final answer to that ... I don't want to be in bed more than I'm up ... [It] may not be the option that I choose.

"That is not to say that there are not hundreds of people in this country for whom a tracheotomy is the right choice," she added.

She's also given thought to the question of medically-assisted death.

"If you value independence so supremely that you do not want to help with the most basic things like dressing or brushing your teeth or showering ... that that may be your line in the sand, but it's not mine. I couldn't care less," she said, adding she's "thrilled" the government now allows people to make the choice to have an assisted death.

She says over the years, she's seen MS targetedby so-called miracle cures ranging from the now-disproven liberation therapy, to restrictive diets and expensive supplements.

Solving the MS puzzle

A believer in science and medicine, she's resisted buying in, instead focusing on the here and now.

"I enjoy my life. I've lost the pleasures that I used to have but I enjoy conversation," said Rathbun.

"I'm interested in global affairs. I have always loved world literature. I have a passion for music. We enjoy film documentaries. We enjoy family gatherings. It's very hard to say goodbye to that."

While she says she's had "excellent care"her experience with the health-care system hasled her to believethat there should be more nurse practitioners and patient advocates to help people with MS navigate their care.

Rathbun says the systemfocuses too much on acute care, not long-term chronic care that allows patients to have a better quality of life.

She also believes dedicatedMS clinicsthat employcounsellorswould help families cope.

"It was never really said, 'are you talking about it?' We weren't skilled at that," she said.

More than 30 years after her diagnosis, she hopes she lives "to see the day when the MS puzzle is solved," but she's pragmatic not at all in denial.

"It's a very big puzzle."