Last year medical professionals had given up hope for Joe Tom's heart condition, and sent the elder to palliative care. Now he's back working in the Quu'asa program. (Denise Titian photo)
Joe Tom has spent the last three decades helping people find health, wellness and cultural awareness. But a childhood heart problem resurfaced, forcing him to rely on family and belief systems to save his own life.
“I heard a nurse say I wasn’t going to make it, that I'm too weak,” he recalled of a time in early 2018 when he was placed in palliative care. “I was told there was nothing more that could be done.”
Tom works as a Senior Cultural Wellness Worker for the Nuu-chah-nulth Tribal Council's Quu’asa program. He helps people find wellness, in part, by reconnecting them with their Nuu-chah-nulth culture and healing methods.
“I've been doing this kind of work since around 1997,” he shared. He talked about peers that he worked with in the past including Tla-o-qui-aht Ha'wilth Ray Seitcher Sr. Together they shared cultural knowledge and developed methods to reach out to help people.
“I don’t own the cultural information I know,” he said, “it comes from our ancestors and it is my interpretation of what I learned.” Tom said he tells people that they can use his knowledge in the best way that helps them.
“We actually get people just to smile again, that’s what I love about my job,” he said.
Tom was born in Ahousaht in 1944 in his great grandmother’s house. His mother Martha August was from Ahousaht but lived in Hot Springs Cove with her husband Joe Tom Sr. In his first three years he went back and forth between his grandparent’s home in Ahousaht and his parent’s home and in Hot Springs Cove.
At age six Tom went to Christie Indian Residential School at Kakawis, where he stayed until 1959. While there he contracted rheumatic fever. Rheumatic fever is a disease that can affect the heart, joints, brain, and skin. Rheumatic fever can develop if strep throat and scarlet fever infections are not treated properly.
“I was about 10 and it weakened my heart valves; I was told that it would get worse over time and unless new technology comes up, I would have a short life,” he recalled.
The diagnosis didn't hold Tom back in life. He spent his last two years of schooling in Mission, B.C. at St. Mary's Indian Residential School and married Regina Amos fresh out of school. The couple had one son, Lenny, together and took in more.
“We had Donna, we adopted Larry and we helped raise Brian, Gloria Jean and Charity,” he shared.
Having grown up in a blended family, Tom was fortunate to have loving sets of parents. Joe Tom Sr. had children with his former wife Louise. She went on to marry Alex McCarthy. Joe knew her as Mama Louise.
“Mama Louise and her husband Alec had a deal with mom and dad,” he recalled. “When the kids were with her, at her house, they were hers and vice versa. I was treated real well there.”
He was able to carry these teachings of unconditional love and acceptance forward to the young people that came into his life later on.
While his marriage didn't last, Tom maintained parental relationships with the children he and his former wife raised. During the 1980s, Tom and his then wife Patricia entered into a treatment program, to deal with alcohol and family issues, he said. He followed up at another treatment centre, then began working at Kakawis Family Development Centre, which operated on the grounds of the former Christie Indian Residential School.
He later enrolled in a special two-year university program that trained people to work with children and youth; it included a cultural component.
Over the years he built on his skills and began working for the NTC Quu'asa Program. His daughter Donna also works for the NTC.
“I think it was January, about two years ago at a staff meeting when we noticed he was fatigued and dizzy, so we sent him to emerg,” said Donna, adding that it was not like him to be tired all the time.
Tom was sent home took some time off of work to rest, but that didn't help. He was still tired and having dizzy spells. A check-up revealed that Tom was suffering from internal bleeding.
“It was fixed but I needed more surgery on my heart,” he said.
Side effects from his medication caused him to lose weight and sleep, and worse, he couldn't remember things. Tom was to have open heart surgery but suffered two strokes.
“I remember waddling down a hallway at the hospital and I could not understand why; I asked my son why I was waddling,” he said. Lenny pointed to Joe's feet, telling him they were swollen. In another memory he saw himself in the mirror; a thin, gaunt, unfamiliar face was looking back. Joe had gone from 250 pounds down to 121 in a very short period of time.
It was at that point, in March 2018, that he placed in palliative care. Donna said that by then he had been in the hospital for about a year, and the family was gathered at the hospital to hear the news. But Joe was oblivious to what was going on.
“I noticed that doctors weren’t making their regular morning check-ups and when I asked about it I was told that they wouldn’t be coming around anymore, that they were just there to keep me comfortable,” said Tom. Two days later Tom said he demanded to see the doctor; he wanted out of the hospital.
Donna said her father was frustrated with being sick and with being institutionalized – just like in the residential school.
“I had a fight with a nurse – I wasn't very nice,” he recalled. Tom said when he demanded to be released he was told that his life was signed over to the hospital and that they make the decisions. Donna stepped in to advocate for her father, who struggled to understand the health care professionals in his weakened state.
He was eventually allowed to leave, even though he could barely walk. Tom was so weak that he needed the support of his son just to stand. Family came to care for him at home.
In early 2019 Tom was reassessed by a heart specialist who determined that he was strong enough for open heart surgery. On Feb. 14, 2019 Tom had two heart valves replaced on one repaired.
“I told the surgeon that I had stuff to do, that I want to live, that I don't want to lay down and die,” said Tom. “The doctor shook my hand and said, let's go for it!'.”
Tom believes he had an out-of-body experience while he was in surgery.
“I could hear them talking to me and it felt like I was looking through a little glass window,” he said. When the time came to restart his heart, he said he heard a nurse yell, ‘yippee!’ and then the experience ended, seemingly when his heart came back to life. “There was no fear,” he said of the memory, and that gives him peace.
Tom admits that his heart is still weak but he's determined to make it strong. He does a lot of walking and, six months later, is working half time at Quu'asa.
Donna credits cultural teachings for bringing her father through the difficult times. She would remind him to speak to the Creator and they would take him to special places when he needed to pray.
“We'd make do with what we had to give him a brushing,” she shared.
“It’s been exciting; my view of life is really different,” reflected Tom. “My health is much better so I am enjoying my second chance.”
“His recovery is amazing,” said Donna. “He’s always had a gentle spirit but he seems so much more grounded in his spirituality than he was before,” she noted.
Tom vowed to continue to do the right thing to help people. “Don’t ever give up what you want to do, you’ve got what it takes to be healthy,” he said.