Goodbye, Diane Here’s that story I promised you

My friend, Diane Sims, was the unwavering author of her own life, and she wouldn’t let anyone – not family, not doctors, not her illness – tell her how her story would come to an end.

On Friday, May 8, Diane ended her story the way she wanted. Her body had been failing for longer than I’d known her, the result of living with end-stage Multiple Sclerosis (MS), and she made the decision to end her suffering by proceeding with Medical Assistance in Dying (MAiD) – a mercy of our modern health-care system she had long advocated for, earning her the Order of Canada, and one that allowed her to live and die on her own terms.

Three days prior to Diane’s death, she and her husband, Dennis Young, invited me to visit with Diane and interview her one last time. Diane was many things – an author, an advocate, a loyal friend and a force to reckon with – but she was a journalist at her core, and that’s probably why we got along so well.

I was nervous going to see Diane. I had only experienced one other deathbed conversation with my dad, and I wasn’t sure what state she’d be in when I saw her. Would she even have enough energy to talk in any depth?

It was shortly after 4 p.m. when I walked into Diane’s bedroom at home. She was in bed with Dennis, they were watching some detective show on Netflix they both enjoyed, and the window was wide open, ushering in a refreshing chill. Diane said she appreciated the fresh air.

Diane turned off the show and Dennis nodded a quick greeting before rolling over and closing his eyes. Before long, he was snoring softly, an oddly calming backdrop as Diane and I talked.

I asked her how she was feeling. I knew it wasn’t good.

“Physically, my body is breaking down,” she told me. “Mentally, I’m sad. I’m sad about leaving Dennis. I’m sad about not being able to do what I used to love doing, writing and speaking.”

Diane was always honest and open with me about how her body was deteriorating. She said she had a wound in her thigh that had gone necrotic, something that was clearly causing discomfort physically and mentally, but she assured me her pain was under control.

In those first moments, I realized with some relief Diane’s mind was still sharp. Throughout our conversation, she recalled specific dates and the names of her family, friends and every doctor who had ever treated her with perfect clarity. We laughed. I cried.

She spoke first about how she’d resigned from Stratford’s accessibility advisory committee earlier in the day, delivering the news by phone from her bed and sharing one last moment with the people who had helped her push for an accessible entrance at the police station and reduce the slope of the bridge to Tom Patterson Island, the latter of which has not yet been implemented.

She said she was proud of how far the accessibility committee had come under her and Roger Koert’s leadership, and she knew she was leaving it in the good hands of people who cared.

“It’s now a very strong committee,” Diane said. “I’m happy to be leaving it at this time.”

I then asked how she felt about the life she’d lived.

“I’ve lived an amazing life. … It’s been a life of giving back,” she told me.

She spoke of her work with MS Canada and her role as a founding member of the National Ovarian Cancer Association, now Ovarian Cancer Canada.

She talked about her work as a journalist, having achieved a bachelor’s degree in religious studies, a bachelor’s in journalism and a master’s in journalism by age 30 before working at CBC Radio in Sudbury, the Manitoulin Expositor, the London Free Press and later as communications manager for the Canadian Council of Land Surveyors.

“I had worked at the Manitoulin Expositor, which was the love of my life, working there. … Then I got the job as assistant editor of Legion Magazine, which was another love of my life.”

She told me working with veterans was one of the most meaningful parts of her career. Her father had been a lieutenant in the Second World War, and that personal connection deepened the meaning of the work.

She said most of the veterans she interviewed had never been asked by their own families about the most defining years of their lives, only knowing “dad was in the war,” but not what he survived or carried afterward.

“Working with the veterans was just such a joy,” she said. “I felt so honoured and so humbled to hear their stories.

“Often, their own families hadn’t asked them or cared about their stories. … If you served six, five, four, even three years in the war, that was a defining time of your life.”

As Diane shared her stories about work, her illness was a constant backdrop and, at points, became her sole focus. Diane was diagnosed with MS at 17, and the complications of that disease were always close at hand. Yet, despite living under the spectre of her illness, she remained defiant and unwilling to accept any fate prescribed to her.

“I was told I’d be in a wheelchair very soon,” she said of her initial prognosis. “I’d be bedridden by 27 and I’d be dead at 35.

“I looked at him and I said, ‘**** you.’”

Diane told me about how she found out she had ovarian cancer in vivid detail, recalling the day she told her doctor she was sick with more than the flu after months of symptoms, tight clothes and feeling unwell. She pushed her doctor to do an internal exam, only to find out she had a 10-pound tumour the size of “an oddly shaped football.”

Though her doctors managed to remove the tumour through immediate emergency surgery, they told her she would only have a year to live. Diane refused to accept that prognosis and brought her case to another one of her doctors in Toronto. Through an additional medical procedure intended to scrub the rest of her body of cancer cells, Diane’s doctors extended her life expectancy to five years.

“So that’s when I decided I was going out on my terms,” she said – a decision she made long before MAiD was legalized in Canada.

Diane outlived her doctors’ best hopes by more than two decades. Diane knew her body, pushed for answers, reached for friends and refused to let a diagnosis become destiny.

After describing cancer, MS and years of health crises, Diane did not frame her life as tragic. She said it had been full of miracles and full of downers, but she chose to live with joy and gratitude rather than self-pity.

I suggested that decision may have kept her alive, and she agreed.

Diane packed a lot into the two hours I spent with her, only pausing for a few moments every so often to collect her thoughts or remember a specific detail she felt was important.

One story that sticks out to me now and illustrates just how willing she was to challenge those in power was about her time serving on the Eastern Ontario Health Board. While serving on the health board’s finance committee, she was told 20 nurses had to be laid off by Christmas. At the next board meeting, the committee began planning a Christmas party at a golf-course resort for board members, senior staff and spouses.

Diane objected, requested a recorded vote and was dismissed by an older board member who told her she “didn’t know the way things are done.” She lost the vote, then took the issue to the media. She also contacted Ruth Grier, then minister of health, who later issued a directive barring health boards and agencies from using general revenue funds for Christmas, retirement or birthday parties.

There was a cost. Diane received a death threat over her decision to speak out, but she remembered a Kingston radio interviewer telling her, “You have a lot of balls.”

“When all else fails, go to the media,” she said.

Near the end of our conversation, I asked Diane how she felt about what comes next.

“I have tremendous faith in a mysterious, magical, mystical divine,” she told me. “I have connected with the divine, through my life, with Jesus.”

Diane described an afterlife where those closest to her would be waiting for her arrival. She said she would love if her brother, Harv, was there to greet her first.

She told me she had said nearly all her goodbyes, but the hardest would be her last.

“Saying goodbye to Dennis; that is the hardest thing,” she said. “I want him to grieve, but I want him to get past the grieving and live again.

“He has been the perfect help for me through all of this. Dennis definitely is a miracle in my life. I want to leave gazing into his baby blue eyes.”

Before I left, Diane asked if I could write this story and publish it in the newspaper before she had planned to die on May 19. She asked if I would bring her one last edition of the newspaper so she could read what I wrote about her.

I told her I would, gave her a long hug and said I’d see her next week. She didn’t make it to next week.

Assisted by her doctor, Diane died at home, surrounded by the people she loved and staring into the baby blue eyes of Dennis, the person she loved most.

There are worse ways to go.

The conversation I had with Diane is how I’ll remember her. In every story she told, there was a lesson about living life to its fullest no matter what obstacles might be in your way.

Diane always stood up for what she believed in and didn’t let anyone tell her “the way things are done.” At the end of her life, MAiD gave Diane the ability to live as long as she could continue speaking up for those who couldn’t, and as long as she could share her own story for those who could find inspiration in it.

I know I did.