It took a fatal disease to teach Kamloops artist about life
Artist Tania Hennigar spends her days confined to a wheelchair only able to move her head, wrists and hands.
She’s 50 years old and has ALS, a cruel progressive disease that affects nerve cells in the brain and spinal cord, gradually causing paralysis.
Not that long ago, Hennigar was busy operating a tattoo studio and keeping fit doing yoga. Since her life-altering diagnosis of Amyotrophic Lateral Sclerosis (ALS) in 2018, all of that has slowly been taken away.
“When I got the diagnosis (the doctor) was very matter of fact about it and asked me if I was familiar with it,” she said. “I said no and asked him what it meant. He said I had two to five years left and I was stunned. I went to work, did a great tattoo and then went home and melted down.”
Through the ups and downs of Hennigar’s life she always did art, starting with graphite pencil sketches, moving onto tattooing and dabbling in watercolour and oil painting. The shocking diagnosis shattered her mentally and emotionally, and she quickly closed her studio. She put her art tools down.
“I was too angry to do anything,” she said. “I hit a dark place where I wrote lots of dark poetry to get my feelings out. I’m not sure when the turn was, a couple years after the diagnosis. You can only mourn yourself for so long. I’d been sitting around pouting and not getting stuff done.”
After a couple of difficult years navigating anger, panic and grief, Hennigar got back to the drawing board. Inspired to make gifts for those she loved, she invented new ways of creating as her physical abilities diminished, and “that’s when art became fun again.”
“I left behind the expectation of pleasing anyone with my art who doesn’t matter and focussed on the people actually in the auditorium around me, waiting for me to sing.”
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Sitting in her chair in a clean and cozy living room alongside her partner Kelly Norwood and a playful puppy, Hennigar is cheerful and relaxed. She talks about her challenges easily, sharing the lessons she has learned along the way. She and her partner make jokes and laugh a lot. He brings her tea and lifts the cup to her lips for her.
“I wish I did things differently on how I left the industry, I wish I’d savoured the last moments of my business that I spent years building,” she said. “On the other hand you never know how you’re going to react to different situations. When someone tells you have two to five years left to live you panic, and that’s what I did.”
She explains she has brain fog, a symptom of the disease, and pauses in the conversation to ask her partner for help finding the words she’s searching for.
“I had imposter syndrome as an artist, when you think you’re not good at something,” Hennigar said. “Now I look back at my art and think, wow — that’s pretty great. I’m really proud of it and I’m glad I’ve had art throughout my life to be alone with. You’re just doing it and get lost in it when you need to get away.”
Hennigar recently used a sling to assist her in painting but still needed help to reach things. Most recently, she started using her mouth to paint.
“Who would have thought it's getting more fun, I was such a type-A personality having to get every brush stroke perfect and now being able to do it loosely and have fun with it is liberating,” she said. “With the mouthpiece I can do it myself and I have no expectations. This is what they mean by let the art flow.”
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She compares the freedom of painting with her mouth to when she was in a walker, struggling, until she was “forced to be in a wheelchair.”
“Suddenly I could go anywhere, it’s ironic,” she said. “When you let go and adapt you come into the flow of life.”
Hennigar has two quotes about art that resonate with her. The first one is “art is long, life is short.” The second one is “love your fate.”
“Life is short, but art lives a lot longer than any of us do,” she said. “Love your fate means this is you, this is what you have. This is me, this is my condition, this is my journey and it’s really interesting, my life is so fricken cool.”
Hennigar said her family has suggested she gets registered for medical assistance in dying but she isn’t ready for that as she isn’t in emotional or physical pain.
“I’m enjoying life right now and not too concerned with the ending or death,” she said. “Some people get halfway through a vacation and start worrying about having to go home and waste their last days worrying about it. I’m just enjoying my time in the sun as long as long as I’m here and I’ll worry about the vacation ending when the plane touches back down.”
While working to leave a legacy of artwork for those dearest to her, with paintbrush in mouth, Hennigar’s message to others is simple.
“I look up at the sky and it's forever out there and whether you’re 50 or 26 or 100, life is short, be gentle to yourselves,” she said. “Even if you’re not able to savour every day, just give yourself those gentle nudges. If you savour a moment you do, if you don’t you look back and learn from it. You grieve, you go through the gamut, and you treat yourself to a little grace.”
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