Son shares heartfelt story of mother’s life through award winning production of “Dear Jax”

St. Joe’s Aphasia Program is a respite from the outside world where Aphasia’s effects are little known and even less understood. Such was the experience of Susan Maclean.

As a successful freelance journalist and communications specialist for over 40 years, Susan’s expertise with language and words were one of her greatest and most valued strengths. But there came a time when Susan’s ability to use her words no longer came so easily and her craft began to slip away. In 2014, Susan was diagnosed with primary progressive aphasia, a communication disorder that affects a person’s ability to speak and write, as well as understand both spoken and written words. The disease can have devastating impacts for the person affected and their loved ones, often leading to frustration, isolation and depression as one loses their ability to express themselves and understand others.

Shortly after receiving her diagnosis, Susan and her family sought support from the Waterloo Wellington Aphasia Program at St. Joe’s. As Susan’s son Stephen shares “The support and resources provided by the Aphasia Program were a godsend for my Mom. I remember Craig, our social worker, coming to our home. He was one of the first people to understand not only how my mom was experiencing this disease, but also the struggle of our family in dealing with her rapid decline and the grief it was causing.”

Through the Aphasia Program, Susan received specialized speech and language therapy to help her practice her language skills and learn to use other ways to communicate. Family members also require their own supports to ensure they understand the effects of this disease and learn new ways of communicating with their loved ones. “The Family Support Program was invaluable,” recalls Stephen. “The education, resources and emotional support helped me understand what my mother was going through and stay connected to her and a community of people with similar experiences.”

Susan passed away in 2016 and shortly afterwards, Stephen came across boxes of letters his mother had written spanning over two decades all addressed to “Jax.” The discovery of these letters, coming after years of limited communication, brought his mom’s voice rushing back to him. Stephen, with the help of director Jean-Marc LeBlanc, turned the letters and Susan’s experiences into the heartfelt award winning one-man production entitled “Dear Jax.” Dear Jax emotionally tells Susan’s story while discussing mental health, spirituality and communication in all of its forms.

This August, Dear Jax was featured in the Guelph Fringe Festival and Stephen invited the St. Joe’s Aphasia team to view the performances. “Seeing Craig again after all these years was a powerful experience and it was so rewarding to have him and his colleagues in attendance” shared Stephen. The reconnection of Stephen and Craig was a valuable reminder of the role St. Joe’s staff and programming can play during a challenging time in people’s lives.

 

This story was published in the fall 2022 edition of St. Joe’s Newsletter.