‘Remarkable blessings’ from a life cut short by ALS
In the late fall of 2010, Shelagh Mikulak was told she would soon lose the use of her legs, her arms and, eventually, the ability to breathe on her own. By the time she summoned me to her bedside six weeks ago, she was in the final stages of a vicious disease that destroyed her body, but left her mind intact.
Still, Mikulak was determined to speak out. Using a high-tech talking machine that she controlled with eye movements, along with the assistance of her husband of 39 years, the 60-year-old expressed her objections to recently announced government cuts to palliative care.
Along with cuts in other areas, the province had just announced the elimination of 26 full-time equivalent positions from palliative care, seniors’ health and integrated homecare programs.
“I am OK with dying, but I need to know my family has support,” said the Dublin-born mother of two who had ALS, more commonly known as Lou Gehrig’s disease, and was concerned the changes would negatively impact her hopes to remain at home until her last breath.
Although she could no longer eat solid food or even scratch her nose, Mikulak was able to move mountains in her final days of life: Less than two weeks after the publication in the Herald of her story, Alberta Health Services did an about-face.
Chief executive Dr. Chris Eagle said AHS would “look for opportunities” to allow existing homecare services for specialized and high-need patients to continue unchanged, as well as address “the impact of changes to palliative homecare services to ensure access and quality of care.”
While I cannot say for certain that Mikulak’s words were what prompted the policy change, I have it on good authority that her decision to speak out played at least a partial role.
In nearly 30 years of journalism, this was my first interview conducted at what was in effect someone’s deathbed, an extraordinary experience I won’t soon forget. After attending the beautiful woman’s vibrant memorial service on Tuesday, though, I am now well acquainted with just how extraordinary Shelagh Mikulak truly was.
At the service she carefully organized in her final months of life, Mikulak — who died on July 14 with her loving family at her side — lets her larger-than-life persona and convictions shine through. Her love for bright hues, her favourite being the colour fuschia, can be seen on most of the 300 celebrants, which fills St. David’s United Church with vibrant colours; the choice of presider, Rev. Monica Kilburn-Smith of the Saint Brigid of Kildare Catholic Faith Community, is a nod to her support of Roman Catholic Womenpriests, an international group seeking to reform the Catholic Church; and then there is the beautiful music that features the likes of k.d. lang and Josh Groban, along with a Celtic prayer complete with arm movements that KilburnSmith encourages the audience to try.
A large contingent of family and friends line up to offer glimpses into the woman who chose library science as a career and living out loud as philosophy in action.
Longtime friend Merle Young tells of her love for cross-stitching, politics, feminism and dancing, including one time she observed Mikulak two-stepping all around her house with her husband Murray.
“When she couldn’t drink her wine any more, I did what any good friend would do — I put a straw in it,” says Young, a comment greeted with laughter.
Dara Neary remembers her older sister “cooking dinner, stirring the pot with one hand, a book in the other,” and her habit of sending packages containing scores of small, individually wrapped gifts for Christmas. Donna Neary recalls the time she was bitten by another child, and her big sister Shelagh, whom she describes as having the biggest heart in the world, “bit her back.”
After a stirring video presentation that shows his wife as a little girl, a beautiful bride and a happy young mother, Murray Mikulak — dressed in the tuxedo he promised her he’d wear to the service — reminds all that his love and life partner “chose to live with ALS rather than die with ALS.”
That philosophy could be seen in such acts as acting as ambassador for the 2012 Betty’s Run for ALS, as well as speaking out about the ravages of the disease to various media outlets in order to bring awareness to the public. “Some remarkable blessings came out of it,” he says of those trying 30 months.
“Shelagh took it upon herself to speak up on behalf of all AHS patients,” says Murray, who at the conclusion of his eulogy announces the creation of a scholarship in library sciences in his wife’s name. “She never let it stop her from being heard.”
Even in her final days, Shelagh Mikulak indeed made herself heard, leaving a legacy for fellow ALS sufferers and palliative-care patients — an extraordinary act, from an extraordinary woman.