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The Power Of Positive Role Models And Community On Our CWN

I first met Julie Flygare last fall. And, I have to say, I was little nervous. After all, I'd read her book Wide Awake and Dreaming (loved it because gave me  further insight into what Mathilda was dealing with ), followed her blog REM Runner (somewhat intimidated because I can't even run on a treadmill), and been incredibly inspired by her ground breaking advocacy for people with Narcolepsy (the Narcolepsy Not Alone Campaign).

It's genius when you think about it. Because the over-riding sense of isolation that comes with Narcolepsy leaves sufferers and their families feeling precisely that: cut-off and alone.

Once I'd wrapped my mind around Mathilda's diagnosis six years ago, explained to those around us what was happening and began to figure out treatment, there wasn't much left at the end of each day other than fear and loneliness as Mathilda, the Professor and myself, searched for sleep.

So like a lot of people, I turned to Google. I found a bunch of largely academic papers (although very few that referenced children) and hospitals like the Mayo Clinic and Stanford, and then stumbled across Julie Flygare's Narcolepsy Not Alone Campaign--a database of  hundreds of other people just like us with the same issues, the same symptoms, and more or less the same clinical history.


The funny thing with social media, is that when it is done well, it can give the impression of a formidable personality with whom you might not resonate or relate. Someone who is perpetually happy and successful. Julie comes close to that but what you don't see on Facebook and Instagram is the tedious hard work that goes into blogging, her dedication to raising awareness and the sacrifices required when traveling, presenting, and forging personal contacts with PWN around the globe. Despite dealing with Narcolepsy herself, she somehow manages to be consistent with her advocacy efforts whilst holding down a full time job. To my mind that is very impressive.

When Julie crossed our threshold to meet Mathilda and have lunch with us (turns out we are neighbors) I was immediately put at ease. She's petite, and has the kind of manner that made me wonder why in the world was I so nervous. Some of it is hard to explain but has something to do with the fact that when I meet an adult with Narcolepsy, I immediately see they have a connection with my own CWN. Despite being a care-giver seven nights a week, other PWN understand every symptom related to Narcolepsy and Cataplexy in a way I never will.

And that sort of makes me a little sad. It's as though they have an unspoken understanding, they speak the same language, they get each other. But this is also where connection with positive role models, whether literal or virtual, comes in.

As Julie spent time with Mathilda, drawing banners and talking about having Narcolepsy, I backed right off, loving their connection and the supportive way in which she encouraged Mathilda to be proud of who she is. She was able to communicate that having Narcolepsy has made Mathilda special, and that she can be anything she wants to be. It's one thing to say this night after night as a parent, but it's quite another when someone you look up to tells your child she really is beautiful and brave.

This role modeling is so powerful. No doubt it has  an immeasurable impact on our CWN as they grow up fighting a condition that threatens to isolate them from society and battling exhaustion levels that make the most mundane of tasks like getting dressed seem overwhelming.  I'd already shown Mathilda pictures of Julie running a marathon, and photos of others who have managed to swim and play golf on the international stage, but it sort of came together her for that afternoon as they sat there talking.

As the Narcolepsy Not Alone campaign has continued to reach thousands of sufferers around the globe,  Julie has developed may other means by which PWN feel both connected, supported, and involved. This weekend our family are delighted to support Sleep In 2016. It's a super way to raise awareness and funding for adults and children with Narcolepsy. For more details check this out. And if you feel able, would you consider donating even the tiniest amount to help the millions of people that suffer with Narcolepsy?


With grateful thanks to PWN who are positive role models to children like Mathilda. Especially Julie Flygare.

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