No one can ever know the pain inflicted by Parkinson’s disease – unless they’ve experienced it. Sister Adelaide Fortowsky, an Ursuline Sister, lived with this disease for more than twenty years and wrote about her ordeal in a diary. Published as My Soul Still Dances: Living with Parkinson’s, she records the progress of the disease as she slowly deteriorates.
Born Bertha Fortowsky in 1930 on the family farm near Cavell, SK, she was so frail at birth that a midwife, fearing the newborn wouldn’t live, baptized her. She joined the Order of St. Ursuline in 1950, taking the name Sister Adelaide, and made her final vows in 1956.
After teaching elementary school in Saskatchewan villages and towns for twenty-nine years, she joined the staff at St. Angela’s Academy, an all-girls high school with live-in students, at Prelate, SK. She taught until 2003, when her Parkinson’s affliction became severe.
This is not an easy read. Parkinson’s has no known cause or cure. When “normal” activities were no longer normal, Sister Adelaide felt trapped in her own body, not knowing what was going on inside. At some points, she even questioned her faith, wondering if there really is a God, and why would a loving God allow such suffering? She ponders how those without faith can cope with such a crippling disease.
She tried to maintain a positive attitude, sometimes living for little things, like watching Saskatchewan Roughrider games. To cheer others, she entertained as Allelu, the Prayer Clown. Despite her growing helplessness, her soul continued to dance, but more of a slow waltz than a polka.
Among the positive outcomes of her Parkinson’s, Sister Adelaide found herself growing closer to God and more sympathetic to others. She notes that while the disease diminishes all that you are, it can’t rob you of who you are.
A deeply private person, she tried to keep her emotions in check, committing her most intimate thoughts only to her diary, “I am letting my heart cry on the inside,“ she wrote. For fear of demoralizing others, “I do not cry on the outside much.”
When Sister Adelaide was no longer able to write, her lifelong friend and caregiver, Sister Rosetta Reiniger, filled in the gaps. Sister Adelaide passed away exactly one month before the sixtieth anniversary of taking her final vows to become an Ursuline Sister.
My Soul Still Dances is supplemented with more than ninety black and white photos. It also contains some of Sister Adelaide’s poems or “sunshine” sayings, inspirational verses designed to perk up the spirits of others.
Sister Adelaide hoped to assist both patients and caregivers by sharing her experiences. Perhaps the greatest benefit to be derived from My Soul Still Dances: Living with Parkinson’s, and the greatest tribute to Sister Adelaide, would be for researchers to be so inspired by her fortitude that they find a cure for this terrible disease.
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