In January 2023, MDF’s Community Resources Coordinator, Ruth Sheldon, sat down with Support Group Facilitators Alex and Julie LeBoeuf to learn more about their story!
I got choked up several times during this interview because of the deep sense of belonging I felt while meeting with Alex and Julie over Zoom. Seeing the unconditionally loving glances Julie gave Alex as she spoke about her experiences made my heart ache with warmth. Julie, a highly experienced educator in the field of special education, is naturally skilled and exudes an aura of patience and calm. She gives a type of silent support while listening that made me feel as if I were receiving a big hug. Her body language told me that I had her full attention, and as corny as it sounds, her full heart. Though I know that they have sat down for many similar interviews and answered many of the same questions, Julie hung onto every one of Alex’s words like they were the first she had uttered them.
Alex, now a university student, is a talented artist who was recently propelled into the spotlight of the disability community when she won several awards for her volunteer work and involvement in Muscular Dystrophy Canada, as well as her logo design for International Myotonic Dystrophy Awareness Day on September 15th. Alex is a young woman poised for greatness. Her quick wit shines through and shows that she is processing every word you have spoken. She speaks with the regulated confidence of someone much older, and her soft but steady voice demands attention.
Julie’s husband, Alex’s father, began showing symptoms of myotonic dystrophy in 2012. He underwent genetic testing and was diagnosed with myotonic dystrophy type one (DM1). Shortly thereafter, Alex was tested, and a positive test came as somewhat of a relief- it explained all of the symptoms Alex has been experiencing. Julie described the day they received the positive results; “One single tear went down Alex’s cheek and we asked her if there was anything we could do for her. She said that there was- she would like to meet someone else with myotonic dystrophy.” Alex and Julie both spoke about the benefits of making friends with people in the community.
"Alex found the importance of using her voice," Julie stated regarding their increased involvement in the DM community. The logo contest gave Alex a sense of purpose during the pandemic that she didn’t want to lose. I can certainly identify with the way the pandemic has often led me to feel “doubly isolated”, isolated in the general sense, but also as a result of living with a largely misunderstood disease during a public health crisis. It can sometimes feel easy to get lost in all of the fear. We ask ourselves questions about our safety, about the mechanism of the disease, as well as whether we should risk cutting corners. If I go to the grocery store, I will get to interact with people, but is it too much of a risk? Do I skip brunch with my friends to protect myself? Ultimately, we can be left feeling lonely regardless. I feel like I am the only one who asks these questions so frequently; none of my friends have to. But now, I am sitting across from someone who has transformed the feelings that I just described into actions. During the pandemic, as I lounged around and ate ice cream (and sometimes feeling sorry for myself), Alex was channeling her discomfort into the creation of art to be used by and for the DM community. To me, that is inspiring.
Alex spoke in a matter-of-fact way; "I didn't want to be just another 'patient'. When I started getting involved, I found a sense of purpose.” That is exactly what Alex has done; and Julie has been there every step of the way- from diagnosis to local involvement, and to international engagement. It has been made abundantly clear over the time I spend chatting with Alex and Julie that they intend to live life out loud. Julie ended the meeting by saying, “From the get-go, I said we are going to live hard. We are all terminal. It makes us more aware of living our lives. Don't wait to take that trip!” As I write this, I think about my next trip... now you all think about yours!
These two have found a new way to support the community but leading a support group in Canada. They encourage you to join them for their Spring meeting on May 6th, 2023!
Thank you, Alex and Julie!