Park honours woman who faced rare fragile-skin disease
Epidermolysis bullosa affects the skin
A park in the small Saskatchewan town of Alvena has been named in honour of a local woman who bravely faced a rare skin disorder where the slightest touch was a thing of pain.
Marlene Kalynka, who died in 1996 at the age of 37, was born with epidermolysis bullosa, a condition characterized by fragile skin that blisters under the slightest contact.
Kalynka had the most severe form of the condition, which is very painful and leads to a number of related health issues, including permanent scarring and the disfigurement of fingers and toes.
Despite the physical challenges, family members say Kalynka embraced all that life had to offer and refused to let the condition derail her ambitions and goals.
She rode horseback wearing ski mitts for protection.
And her passion for playing drums was realized, despite fused fingers, by holding the sticks in place with wristbands.
I Am Oceania
I am Oceania, I have the energy of an enormous sea.
I am cleansed and refreshed.
I grow and swell and flow down to low tide.
I am an ocean of life and vitality.
Right now I am at low tide, a gentle wave or ripple of water stretching out over the shore.
I have covered many, drenched some, soaked others while warming a few with the gentleness.
For others I’ve created the storm, the confusion and the turmoil of an angry sea.
I have so drenched them in themselves, forced them to look at that which they don’t want, don’t like about themselves, and then allowed them to dry in the sun, warm and yet comfortable to again be wet as my motion flowed over them.
I am Oceania, maiden and mistress of the sea.
I like who I am. I never knew why I chose this name, I understand now. I am the Ocean in all of you.
I am powerful and free. I am the sea — the waves that can rock you gently or toss you about in turmoil.
I am free flowing, a part of the earth, part of you, part of me, part of God, part of the universe. Every molecule that makes me up is part of you and the universe, part of God, part of the universe.
I am free at last.
— Oceania Marlene Kalynka
"She was very, just very determined," Valerie Brown, Kalynka's sister, told CBC News earlier this week. "The more you said no to her, the more she wanted to do something."
As a young adult Kalynka sought treatment for her condition in Germany, with the assistance of Telemiracle.
The visit, which provided therapies with skin applications and diet, provided some relief — for the first time in her life her back was not raw from sleeping on her back.
However, after years of struggle and pain Kalynka died of skin cancer, a complication of her illness.
Impact on town
Memories of her determined spirit stayed with the community and Mayor Ernie Sawitsky saw the redevelopment of a local park, and the need to name it, as an opportunity to honour how Kalynka's tenacity touched the town.
"It was just a tremendous impact that she had on this town. Everybody felt for her," Sawitsky said. "And I think that that's what brought the community together more than anything."
Events to open the park included fundraising projects, with donations going to the Kinsmen Telemiracle Foundation.
Although the redeveloped area will be known as the Marlene Kalynka Park, she is also known as Oceania Marlene Kalynka, as she changed her name to reflect her interest in music, adopting Oceania after a song by the musician Gowan.
In an essay about Kalynka, prepared in advance of the opening of the redeveloped park, her sisters spoke of the challenges she faced and her determination to live life to the fullest.
"Her spirit to live life with every fibre of her being, despite the unrelenting pain she endured, was remarkable," the essay, shared with community members and CBC News, said. "Oceania lived because she loved life and all the wonderful things that life has to offer."
Alvena is about 60 kilometres northeast of Saskatoon.
With files from CBC's Kathy Fitzpatrick