‘I couldn’t save myself ’
Kelly Knuckle died alone because she didn’t qualify for a medically assisted death. Her brother is among those fighting to ensure others don’t have to follow her path, as the Senate deliberates over new legislation THE SPECTATOR’S JEFF MAHONEY TELLS THE
Kelly Knuckle loved her mother Liz very much and, when the disability and pain became unbearable, Kelly went to live with her in the last months of her own life. On the night of Nov. 2, Kelly waited until she was quite sure her mother was asleep.
It was around 11:30 p.m. when she left Liz’s house and checked into a hotel.
There, in the hotel room, alone, she took some pills and waited to die.
She did, but not until the next day, in hospital where she was taken after being found in the room, comatose but still with vital signs. Her partner Brad Chichakian had to plead with doctors to honour her wish not to be resuscitated, written out and legally sealed. The doctors said they were legally obliged and duty-bound to attempt to revive in the case of suicides.
Whatever they did or didn’t do after that, Kelly finally died that day, Nov. 4. She was 49 and left behind, in the good care of her memory, Brad, their three children (ages 12 to 16), her mother, three siblings, many friends. Also, a world full of questions. Fundamental questions, perhaps ultimately unanswerable, pertaining to the rights and responsibilities we have or should have around our own deaths, especially when we who never asked to be born find ourselves asking to die.
Questions like: Why, since she was in unremitting agony, couldn’t she die with medical assistance, with her loved ones around her, rather than alone in a hotel room?
Kelly’s brother, Rich Knuckle, a teacher, would like that one answered. He has been lobbying for change, with the help of the organization Dying With Dignity Canada. Brad is behind him but is too spent to be active on it right now.
Brad shows me the last texts he and Kelly shared.
KELLY: Hug the kids long and gently for me.
BRAD: I will always do that for you.
KELLY: I love you, Brad.
BRAD: I love you too, my love. I will always love you. How are you?
KELLY: My mom is finally in bed and I am finishing some last bits to be sure she is asleep.
Some time passes.
BRAD: Fill your heart with love and memories.
KELLY: I literally just wrote those words to you. (Heart)
BRAD: I love you.
No response.
BRAD: I love you more than you will ever know.
No response.
It started about three years ago. “It was her gait at first,” Brad says. The way she walked. It was off. And then sometimes her speech would be slurred. She started losing her hair. In time, she had to use a walker, then a scooter. In the last months of her life, many of her days were spent mostly in bed.
Brad and Kelly searched and searched for a diagnosis, with a hope for some kind of treatment. It was frustrating. They went south of the border. They exhausted every avenue and every expense, all the while Kelly was growing worse.
Doctors seemed stymied. One initially diagnosed her condition as conversion disorder. “In other words,” says Brad, “it’s all in your head.” She knew it wasn’t.
Eventually, they found a doctor at the Dent Clinic in Buffalo who seemed to have more clarity around Kelly’s symptoms. He recognized it quickly, did some tests and confirmed it was cerebellar ataxia, a neurological disorder that impairs balance, movement and much else.
Having a diagnosis put some ground under them, some knowledge, which was helpful, but it was hard ground, hard knowledge. There’s no cure for cerebellar ataxia and, for Kelly, no effective treatment.
She declined rapidly in late 2019, which is when she started forming thoughts of suicide, says Brad. Those thoughts continued through the first 10 months of 2020. In late spring last year, she moved in with her mother, not despite the everything-ness of her love for her three children but because of it.
By that time, she was resolved, says Brad.
“She was of sound mind. It was a very rational choice, clear and conscious, and she didn’t want to be judged. She didn’t want her children to see her taken away in little pieces, a bit at a time. She did not want to die of bed sores.”
Kelly left the house where she brought up her three children, the house into which she and Brad had taken so many people — at various times they have had immigrant families live with them, exchange students and others who needed somewhere to stay for a time.
That was Kelly. “She took care of everyone. She gave,” says Brad. That was her portion in life. She volunteered teaching the learning disabled. She did not want to be taken care of. She did not want her children to see her decline on a daily basis. Being in her own house, with all its stairs and the children, with their various needs, was a constant reminder of what she couldn’t do. It was too hard. So the kids and Brad would visit her at her mother’s. Before she died, they took a weeklong vacation.
Kelly wrote the most beautiful letters to her children, to her mother and family. Long, feeling, eloquent letters, filled with Kelly’s characteristic humour, wisdom and — yes — joy. She made every preparation, took every measure in her power to take, to ensure her friends and family understood what she was doing, why and how she felt about them.
She met with many of them. She said her goodbyes. And then she went. On her own terms, Brad and her brother Rich say. They were allowed to know her plans but they could not be with her at the time, to avoid any possibility of being charged.
She did not qualify for MAID (Medical Assistance in Dying) because her death was not imminently foreseeable, so she did not apply. Cerebellar ataxia is not technically fatal. No, just hopeless, at least in Kelly’s case, as she experienced it.
Almost immediately upon her death, her brother Rich posted a message on Facebook, a loving, direct and frank account of what she went through and how she died, the process and the thought that went into her decision. The outpouring was immediate and beyond anything Rich anticipated.
“I didn’t want people writing their own narrative,” says Rich.
He asked in the post that in lieu of flowers, people write to their political representatives to support changes to the MAID legislation that would remove criterion that a MAID candidate’s death be imminently foreseeable.
Among the dozens who responded was the organization Dying With Dignity Canada. They familiarized themselves with Kelly’s case and have been in touch with the family.
The Canadian Senate is now deliberating on proposed amendments to Bill C-7 which would, among other things, remove the “foreseeable death” criterion from the approval process for MAID, the
stumbling block in Kelly’s case. The Senate has a February deadline to vote.
As the Senate hears submissions, there’s a chance Rich will be called to present, presumably by Zoom or some such platform.
“I’m advocating by default,” says Rich. “The only thing I wanted in the beginning was to make sure Kelly’s story was told. But I would like to see the process broadened and I would love the chance to state our case before our legislators.”
If the legislation passes, Helen Long, CEO of Dying With Dignity Canada, says no one will be disqualified because their death is not reasonably foreseeable in the near future, as long as they meet the other criteria, such as “an irremediable condition and intolerable suffering.”
She says of Kelly’s case, “How tragic that someone has to go down that road?” No one could be with her. She had to die alone by suicide. “But Kelly had a plan,” she says. She had an understanding family and could speak about her decision and be supported.
Many in Kelly’s situation don’t have that kind of support.
Dying With Dignity Canada does much work helping people navigate the process but, she adds, another part of the organization’s mandate is “telling Canadians and politicians these stories so they know and understand that their decisions (about MAID) impact real people.”
Now, regardless of what happens with the legislation and the ethical debates, there is the aftermath — pieces to pick up, lives to go on with, moments of misgiving and disquietude that linger stubbornly and haunt the hours.
“I worry about Brad,” says Rich. Brad worries about Brad.
“Every day I have regrets,” Brad says. “I picture her here laughing. Then there was as much suffering as laughter. How do you weigh it? I wonder if I tried hard enough,” to convince her to stay, even if just a bit longer, while she still had some quality of life, could still enjoy, and there might be a remission. But her energy levels were so low, her strength ebbing, Brad says.
“‘You don’t understand what I meant,’ she would tell me. ‘It’s not only that, but I’m losing the ability to kill myself.’ ”
Kelly left little doubt that her decision had rooted itself unchangeably in the soil of her deepest conviction and self-determination. Her suicide was the completion of a failed attempt months earlier, in June, after which, because she would not forswear more attempts, she was hospitalized at West 5th. After weeks, Kelly, still vowing to follow through, so headstrong and true to herself to the very end, was released.
Brad and Rich both say she should never have had to endure that. “She was completely sane,” says Brad.
Brad had much time to prepare for her loss and thought he had braced himself, but he never fully grasped the finality until it arrived. He is struggling. “I feel like I’m in a fog and everything is so distant.”
His and Kelly’s children — Sam, 16; Joe, 14; and Vivi, 12 — are, Brad says, coping remarkably well. They and Brad are surrounded by support from family and friends. But he monitors their feelings constantly.
Rich has thrown himself into the effort to change the law.
“It means more for him than me,” says Brad. “For him, it (her having helped change the law) gives her life, her death, that much more meaning. But for me, it’s different.”
“I grieve her,” says Rich, “but not her decision.”
“Right now,” says Brad, “if I could just have another day with her ... ” And the tears come.