It is not enough to simply look at pictures of Otto Kamensek's sculptures.
To understand what it's like to have lived through 40 years of chronic arthritis, you have to visit the Port Moody Arts Centre in person and study his exhibit, which closes May 8.
His clay pieces convey the massive pain behind the debilitating condition that now affects 4.6 million Canadians and has no cure.
For Kamensek, he was a nine-year-old boy in Grade 3 when he was diagnosed with what is known today as juvenile idiopathic arthritis. His was classed as systemic - "the worst of all," he said.
Then, he felt like lava poured from his joints. The brutal swelling and stiffness attacked his toes, feet, knees, hands and neck. By the time he was in Grade 4, the disease ravaged his body and mind so badly that the obese boy shrunk to skin and bones, probably due to depression.
The disease was nothing new for his family. His great aunts on both his mother's and father's sides had also experienced severe arthritis though, in their day, neither was able to access the kind of medical treatment available to Kamensek in the 1970s.
Over the years, the Burnaby resident was in and out of the hospital. He got new knees and hips and tried a myriad of prescriptions, alternative therapies and exercise techniques to gain relief. He also had four long-term in-patient stints in rehabilitation centres, where he started to hone his craft.
About a decade ago, Kamensek signed up at PMAC and took clay classes as a way to manage his stress. Already active in arthritis research circles, "I wanted to see what happened when I put my advocacy with my art," he said.
The "distraction of daily life" soon turned into his full-time passion. And, last year, PMAC awarded Kamensek with a year-long residency to expand his clay collection of demonstrating what it's like - physically, mentally, emotionally and spiritually - to live with the crippling disability.
His heart-wrenching display, titled Shards, Bone Deep, opened April 17 and has about a dozen pieces with little colour. The harsh reality of Kamensek's world has people nude, with giant hands, brains exposed and mouths sewn shut.
The first piece upon entry in the 3-D Gallery, called Post Shock of Diagnosis, has an androgynous head with plugs in its ears to block out the white noise of mass information. An Angry Joint has heads screaming from the knee and ankle of a right leg while The Fog of Fatigue has a desperate person melting into the ground from the burden of swollen joints. Chronic Disease applies to both arthritis sufferers and cancer patients, Kamensek said, with a little person looking up insurmountable stairs, a late-day shadow at his side. There are also a torso with intense muscular tension and a left hand with an inflamed tendon exposed. And, for his female friends with arthritis who can no longer wear high heels, Kamensek honours them with a left foot, mangled toes and a black spike to represent what would be a pump.
Still, despite the heavy matter, the show has a light side at the end. At the request of PMAC gallery co-ordinator Janice Cotter, Kamensek created a homunculus puzzle with magnets for participants to play with.
Overall, the exhibit has drawn strong emotions, Cotter said. Kamensek's mother cried at the opening reception; others afflicted with a disability related their pain to the artist. For his part, Kamensek, 49, said he's proud of his achievement and his artwork. "I can look back and give that child at nine a break" from the suffering and sadness, he said.
An Emeritus member of the Consumer Advisory Board of the Arthritis Research Centre of Canada, Kamensek hopes his display will generate conversation about the prominence of arthritis and its lack of government health funding: 93 cents for every Canadian is spent annually on arthritis research versus $1,000 for cancer and AIDS each. Arthritis "is not sexy," he shrugged. "It gets the lowest funding but has the highest number of disability claims in the country. There's an inequality there."
Kamensek is encouraging people to join his conversation through Twitter via @pomoarts and #HelpingHands. And with his PMAC residency ending early next month, Kamensek wants to put the exhibit on the road to continue the discussion.
Otto Kamensek will speak about art and arthritis at the Port Moody Arts Centre (2425 St. John's St.) on May 1 at 7 p.m. Admission of $10 supports the facility's OK Bursary to help artists in financial need. Call 604-931-2008 or visit pomoarts.ca to reserve a spot.