Somewhere Between Nothing and Everything

by Helene Louise  


As I wrote in my book, when I found out my daughter had suffered a pediatric stroke, I was also told that because of the stroke she would “likely never walk” and that in the specialist’s opinion, “it wouldn’t be worth the trouble” of helping her. 

 After many sleepless nights and much reflection I decided, however, that if I did nothing then of course there was little or no chance of improvement but if I did something, anything, then at least there was a small possibility of some improvement—no matter how small and imperceptible it might seem to others. My daughter might never regain all of the mobility she might have had had she not suffered a stroke, but somewhere between likely never walking and competing in the Olympics, between doing nothing to help her and everything possible, surely there must exist an area of unknown potential and possibility worth the trouble of trying to work towards. How could it not be worth the trouble of trying? 

 This summer, my daughters and I spent some time hiking in the Laurentian mountains here in Quebec (the photo above is one we took along the way on Mont Tremblant). Years ago, especially when I first received my daughter’s diagnosis, that would have seemed an absolute impossibility but now it’s our reality. It’s a family activity that we all love to do together. We hike more slowly than most people and much more carefully, taking into account various factors to make sure my daughter is steady and safe but we’re on the trails just like everybody else who loves hiking. With every step I never forget how far we’ve come, how much I have to be grateful for and in particular, how thankful I am that somehow, between nothing and everything, so many years ago I found the courage to aim for that unknown potential in-between, even if to someone else, it wouldn’t have been worth the trouble.

 Somewhere between nothing and everything, somewhere between “likely never walking” and competing at the Olympics, I believe there is almost always something. For us, that something is walking together happily and peacefully along the mountain trails. That is our Olympic sport and the photo above, our gold medal—no matter how small and imperceptible it might seem to others.

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84th Acfas Conference

by Helene Louise  

This week I had the privilege of making a presentation at a workshop which was organized as part of the 84th Afcas conference held in Montreal. Acfas, stands for “l’Association francophone pour le savoir” which translates to the “Francophone Association for Knowledge”. 

The topic of the workshop was “The Physical Rehabilitation Continuum: From Child to Adult” and I was asked to provide my perspective as a parent in the middle of that continuum, between a pediatric centre and one for adults. I made the presentation in French but have made it available in English and French below. 

Rather than focusing on one specific element, I chose a theme which would be more widely applicable. I spoke about “The Importance of the Tiniest Things”. But, my gratitude for having been included in the event and the warm response to my reflections is far, far from tiny!

Presentation in English: acfas helene louise may 2016 en.pdf

Presentation in French: acfas helene louise may 2016 fr.pdf

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Visit to McGill University

by Helene Louise  

This week I was truly delighted to have the opportunity to speak to a class of students at McGill University's School of Physical and Occupational Therapy. I wasn't sure what to expect or what the reaction might be—it's been decades since I was last in a university classroom. But, it was a wonderful experience and I am very grateful both for how warmly I was received and for the interest the students and professors showed in what I had to say. 

Besides sharing my experience navigating the rehabilitation network in trying to help my daughter after a childhood stroke, I talked about the power I believe each and every one of them will have as they begin working in a clinical setting. As I wrote in A Little More Light For the Seaweed, what I've learned through this experience is the value of the little things—how our words and our actions, unexpected moments of understanding and compassion, can make the difference between frustration and hope, despair and perseverance, failure and success.

I hope my story will serve as a reason, as I said earlier this week, to always be conscious not to inadvertently be discouraging to those we are trying to help. And, to leave open the possibility that there might be a little bit of hope, even if we can't see it. I certainly feel very hopeful for the future having met such bright, sensitive and engaged young therapists-to-be.

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What I Learned in Econometrics Class

by Helene Louise  

As I've written previously, even though my objective after high school was to avoid anything remotely math-related, I ended up studying economics further to the advice of a misinformed guidance counsellor, who told me that economics would be perfect for me since there would be no math (was she ever wrong about that...!). I was most definitely out of my element but stubborn as I was, I persevered until I had completed a master's degree. 

One of the most complicated areas of economics and the one which I found particularly difficult, was econometrics. One semester, the course was taught by a young visiting professor from Australia. He was very shy and awkward, which seemed very un-professor-like given the older, self-assured types that we were used to. And, he not only spoke very softly, he also had an accent that we weren't used to so overall, we were quick to write him off.

However, we soon discovered that underneath that awkwardness was an exceptional enthusiasm for what he was teaching, a boundless positivity, a sense of humour which surprisingly, he was able to bring to such a dry subject area. And, a sincerity that won us all over. I don't remember anything at all about what we learned that year but I do remember how much I looked forward to his class and that to my surprise, I did really well. The experience showed me that despite that I was not a natural in the field of economics and that I hadn't consciously chosen it, if I worked hard enough, I could succeed. 

And most importantly, I learned how someone's approach to teaching something, anything—be it a complex math theory or finding a way to open a jar because a person's mobility has been affected in some way—can make a difference in whether the process ends in success or failure.  That's certainly something I’ve applied to helping my daughter overcome the effects of a childhood stroke. Adding some fun to the hard work wherever I can has made a world of difference.

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Is a measly 27% on a math test a certain failure?

by Helene Louise  

As I wrote in “A Little Bit of Positive”,  I ended up studying economics despite that my objective was to avoid anything remotely math-related altogether. And, on my first university-level math test, I got a humiliating 27%. I was devastated and I was certain that there was no hope of me ever completing that first year, let alone graduating. 

Academic evaluations tell us how well we know something and how we rank in relation our peers. One of my daughter’s first primary school teachers, however, had an interesting perspective, which I have found very helpful. She said that rather than looking at our children’s marks as a reflection of how well they were doing, we should simply look at them as an indication of what they still had left to learn

Obviously, there are some tests which do have pass/fail consequences, like those that determine acceptance to specific programs. But for everything else, maybe there is scope to look at things differently. In terms of my own children, by trying to look at their test results more in terms of what they know and what they still have left to learn, our dialogue has centred more on learning as something inherently positive, rather than just a competitive process characterized by pressure to succeed and a constant fear of failure. 

I think the same can be said for other areas of our lives. If there is an activity that my daughter can’t do very well because of the effects of her stroke, then maybe it’s not necessarily an incapacity or a question of not being good at something. Maybe it’s just an indication of the starting point from which we can move forward. Looking at things that way has certainly helped us to keep motivated and more optimistic, even in the face of what might otherwise be seen as a “certain failure”.

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