Kim Jackson’s mind and body may have been battered by her neurological conditions, but her spirit always emerged unscathed, her family and friends say.
Jackson, an advocate for many causes, including wheelchair accessibility and the removal of taxes on homecare, died in her St. John’s home last week at the age of 42.
Jackson was recently profiled in The Telegram in the six-part series, “The Wounded Brain: A Hidden Pandemic.” In the series, she spoke openly about her life with narcolepsy — a sleep disorder that causes abnormal sleep/wake cycles, causing those with it to have unpredictable sleep attacks during the day — as well as cataplexy, a symptom of narcolepsy that includes a sudden paralysis of all or some of the muscles.
“What happens is your mind is awake but you can’t move, can’t talk. You might be able to move your eyes, but even that is a struggle,” Jackson told The Telegram.
She was born with some health issues, said her older brother, Joe White, but doctors were unable to pinpoint them. Her mind was always as sharp as a tack, he said, and she was considered extremely intelligent, even at a very young age.
It was when their father died, while Jackson was a young teenager, that her condition started to become noticeable, he explained. She seemed to become somewhat lethargic, and missed her last two years of high school.
Jackson later went back and earned her general education diploma, graduating at the top of her class with a scholarship, and went on to become an accountant, employed for the majority of her career at Anthony Insurance.
White said he first noticed there was something seriously wrong with Jackson’s health when the family was together one Christmas, around 2005.
“Kim was standing up and I noticed her hand twitching,” White explained.
“That’s about the time that things started slowly, gradually going wrong.”
Jackson, who had been involved in two car accidents over the years, started falling down a lot, often hurting herself, White said. Although she was reluctant at first, her family members convinced her to use a walker, and eventually a wheelchair.
“At first she got a wheelchair with no arms on it, so she didn’t feel like she was in a wheelchair,” White said.
“Once she felt comfortable, she got a better chair. In the beginning, she didn’t want to go out anywhere with it, but her husband, Dan, would take her out for breakfast on the weekends and he’d make sure the chair went, too. Once she got used to it, the wheelchair went everywhere.
“Dan is an angel. Many men would have cut and run many years ago, trying to deal with Kim’s medical issues, her surgeries and hundreds of visits to the local hospitals. When they made him, they broke the mould.”
Jackson’s diagnosis was never clear, White said. Though she had every textbook symptom of multiple sclerosis, a spinal tap testing for the condition came back negative. All doctors could do over the years was treat the symptoms.
It was neuropsychiatrist Dr. Hugh Mirolo who began treating Jackson as a brain injury patient.
“Kim was originally looking for a single cause and a single remedy for her problems, and I always tried to dissuade her of this. Things like neuropsychiatric symptoms are very complex and have multiple causes and factors, and treatments, and she was able to understand that,” Mirolo said.
While being interviewed for The Wounded Brain series, Jackson gave Mirolo permission to speak openly about her case to The Telegram.
“I told her, it doesn’t matter what we diagnose you with, whether it’s MS or something else, the things that are there will still be there.”
Jackson was responding to Mirolo’s treatment, White said, and, at the time of her death, had seemed to be in the best physical health she had been in in years. Once she got some of her symptoms, including depression and apathy, under control, she was able to participate in activities she loved. She was a poet, a baker, a talented artist who enjoyed sketching, a devoted aunt and animal lover.
She also became passionate about helping others in conditions like herself, and was often featured in the media and on VOCM’s “Open Line” radio show, calling for more accessibility in the local hospitals or more affordable homecare for those in need of it.
When Jackson spoke, people took notice, White said.
“She was an absolute pitbull when it came to issues like that,” he said. “Whether it was people with disabilities or anyone who was downtrodden, Kim would latch on to a cause and wouldn’t let go until she got results. People who heard her on ‘Open Line’ might have thought she was slow because of her voice, but she was often heavily medicated. When not medicated, Kim was an excellent public speaker.”
Whatever Jackson wanted, she got, White said, and despite her physical limitations, she would stop at nothing to get there.
“She never started at the bottom, either — always at the top,” he said. “If she wanted to talk to the minister of health, she’d pick up the phone and call him. If (‘Open Line’ host) Randy Simms said something to her that she took as a slight, she’d tear a strip off him.”
It was Jackson who inspired The Wounded Brain series, after she contacted The Telegram with a goal of raising awareness about cataplexy. She said she had been in the hospital with a kidney infection and had taken a cataplexy attack in front of a nurse.
“She called out for a couple of girls and took my vitals, and I heard her say, ‘She’s faking this,’” Jackson said. The nurse later returned, after Jackson complained to a supervisor, and apologized.
“I said to her, ‘Do me a favour; tell five people what cataplexy is,’” Jackson said. “I want all medical people to know what it is. I want everyone to know what it is.”
Jackson was at home, where she lived alone, the morning of April 19. She had been preparing to go out with her homecare worker to pick out paint colours for her bathroom, which she was renovating to make more accessible. When the worker arrived, she found Jackson having a cataplexy attack on the bathroom floor.
White said Jackson went into cardiac arrest in the ambulance, and died upon arriving at St. Clare’s Mercy Hospital.
While the official cause of death is not yet known — the family is waiting for the results of tests conducted during the autopsy — White said the family is convinced Jackson had the attack while leaving the bathroom, hit her head on the floor when she fell and likely suffered a brain hemorrhage.
“We know of nothing that could explain it otherwise,” White said.
White wants to address healthcare professionals and others who might feel cataplexy isn’t a real condition.
“What burns me is there are some people who didn’t think she had a problem,” he said. “People might even have friends and relatives who have cataplexy and they don’t know about it. This illness is for real. My sister did not fake her death.
“Kim never felt sorry for herself. As bad as her condition was, it was never about Kim. She was always concerned for someone else, and she was secondary. It made no difference who it was she was fighting for.”
Mirolo said he’ll miss Jackson as if she was a member of his family.
“When you know a patient for years and you’ve been an active participant in their victories and defeats in terms of treatment, it’s like losing a relative,” he explained. “The illness took her life, but she achieved a lot, and she has done a lot of good for others out there who may be following the same path.
“There’s irony in the destiny that she was winning one of her battles by raising awareness and having her symptoms validated, and then all of a sudden this sneaky attack killed her. It’s almost like we’re winning a war and we have a terrorist attack and one of our best warriors is gone after an ambush.”