In a world where so many feel isolated, community can be a powerful force. Tara Schrama experiences that – what she gives and gains in community is part of how she copes with a debilitating work-related illness.
Tara was working as a geologist at iron ore mines in the arctic and was exposed to extreme amounts of silica dust. A few years later, having decided to change careers due to a downturn in iron ore, Tara was diagnosed with systemic sclerosis scleroderma, diffused category 5.
Scleroderma is an auto-immune disease that hardens and tightens the connective tissues inside and outside the body – the immune system’s attempt to form a protective barrier against the silica now permanently in the lungs and bloodstream. “So it thinks it’s helping me, but in the end my own immune system is slowly killing me because it’s hardening everything in order to protect against the foreign substance of silica which it cannot remove.” Tara says. All doctors can do is try to slow the progression. There is no cure for scleroderma.
Tara took early retirement at 31 due to pain and stiffness which affects all her activities and her energy levels. She grieves not just the diagnosis and her changed future, but everything her family has been through, from watching her struggle in the hospital, to helping her cope emotionally, and suffering from anticipatory grief for they know this disease is slowly killing her.
But community has been a source of hope and healing for Tara. She is involved with the Scleroderma Society of Ontario, initially as a member and now facilitating support groups and serving as first point of contact for newly diagnosed patients. And at Threads of Life she participates in family forums and online workshops, finding it helps to know there are others with similar experiences. Threads of Life-the Association for Workplace Tragedy Family Support is a national charity supporting individuals and families coping in the aftermath of work-related injuries, illnesses and fatalities.
“I think that’s the greatest thing, is having those that can understand where you’ve been and what you’re going through,” Tara says.
Tara also volunteers as a speaker sharing her story with workplaces, schools and through podcasts and interviews. She shares two powerful safety messages with audiences – both things she wishes she had known when she started work: “One is to always go with your gut. If something doesn’t feel right or doesn’t feel safe, go with your gut and speak up. And the other thing I say is, know your rights. I didn’t know my three rights when I was working as a young geologist.”