As I wrote in January, in order to develop a case study for a McGill University class at which I made a presentation earlier this year, I had to look back through my old files to revisit specific challenges my daughter and I faced after she was first diagnosed. I know I’ve been very dedicated to helping her overcome the effects of a childhood stroke but looking back at the assessments of those early appointments, the references to my younger self made me laugh out loud. For example, a report from 2004 described me as “…incredibly compliant and creative regarding treatment ideas and follow-up” and that the therapist was “…pleased with the dedication of Helene to provide her daughter with the best movement opportunities…”

I specifically remember when my daughter first started occupational and physiotherapy, long before she had learned to speak and could tell me how she was feeling, I was often told by the therapists that the extra effort she would be expending to try to work muscles that weren’t responding, would be very strenuous for her. And as a result, I should expect her to be more tired. Intellectually, I understood what that meant and emotionally, I’ve always tried to be understanding. But it was really only two years ago when when I was unwell for a time, that I could understand what it felt like to be in her position.

After feeling under the weather for about a week or so, I developed an earache. I didn’t think much of it but the next day, I woke up unable to move the muscles on the left side of my face. Diagnosis: Bell’s palsy. It was a temporary inflammation of a facial nerve that left me unable to use the related muscles, which in this case, meant exactly half of my face. I couldn’t close my left eye completely, I couldn’t raise my eyebrow, I couldn’t smile and I couldn’t pronounce certain consonants like “s” and “f”. It was a frightening experience but luckily for me, within a month or so I had recovered. 

The experience, however, left me with some very important lessons. The first one is that I had never realized how much I love smiling at my daughters. And, in terms of parenting, how much I rely on that one action alone as a steady source of encouragement and reassurance for them. Secondly, the experience was a blunt reminder of how fragile our lives are. Literally overnight, the simple things we take for granted—like our ability to smile at our loved ones —can be lost. And finally, in the context of my daughter’s rehabilitation after a childhood stroke, my experience with Bell’s palsy left me with a greater understanding of how things must feel from her perspective, in a way I couldn’t have imagined without experiencing it myself. Although I had been told early on that her efforts as related to occupational therapy exercises would be strenuous and tiring for her, it wasn’t until I was struggling myself with muscles that weren’t responding that I could really appreciate what it meant. 

In our current situation of intense occupational therapy while the Botox is making it easier for my daughter to use her hand, my experience with Bell’s palsy has brought me a new level of compassion. Not only for my daughter, in terms of how hard she’s working to try to make progress, but for all the children and adults who have to work so hard to compensate for muscles that aren’t responding as well as they should. Their courage to continue persevering to do the simple things that so many take for granted, is truly admirable.