This April, I will be running in the Boston Marathon raising awareness for Rare Diseases, a cause that I am very passionate about. In a previous blog post, my patient partner Emma and I shared our story of how we met and how our passion for running has connected us. It was exciting to hear Emma’s story and I hope you will enjoy it as well.Â – Andrew
Running Tales by Emma
Iâ€™ve enthusiastically done runs for cancer, MS and mental health but I never dreamed that anyone would think it a worthwhile endeavor to run in support of my wellbeing, to run specifically for those of us touched by diseases most people havenâ€™t yet heard of. Andrew Scholteâ€™s Run is my reminder that rare diseases matter too and my motivation to keep my running shoes ready at the door, making it just a little easier to get out there. As Andrewâ€™s patient partner, I make an extra effort to time my Tuesday training to overlap with Andrewâ€™s so that we can share a weekly virtual-run ritual, despite being continents and a six hour time difference apart. This is unlike any running team Iâ€™ve been a part of before.
I find myself getting excited every time I receive notice of a new â€œRunning for Rare Diseasesâ€ post in my inbox. As I have a rare disease and I like to run, it didnâ€™t take much convincing for me to subscribe. The fact that I continue to open these messages is rather a reflection of my huge appetite for stories and appreciation for their tellers. All of our stories are unique but something keeps resonating as Iâ€™m introduced to The Team through reading your posts. After the â€œTeam Wylder Nation Race Reportâ€ I took a giant leap of faith and started training for my first 100 km race. â€œA Holiday Hat Trickâ€ warmed up my winter running. â€œI Run for Quinnâ€ brought yet another reminder of why sharing stories matters.
I consider myself to be a storyteller, even with the ever-present self-doubting regarding my abilities to express whatâ€™s in my heart. It was actually exactly one year ago that I finished my digital story, just in time for Rare Disease Day 2013 at the end of February. The timing was also ripe to bring the project to a conclusion as I had recently gotten married and was then preparing to move from Toronto to Germany. Before embarking on what felt like a significant next phase in my journey, I very much wanted to give my parents the gift of my story, our story in fact.
It had been an extremely long process of conducting family interviews, sequencing significant events from foggy brains into a family history timeline, hunting for clues in sticky photo albums and old shoeboxes, accessing my own medical files and then drawing-up nonsensical word association maps to try to pinpoint the story I wanted to get out. Learning the necessary technology for digital storytelling was yet another leg of the trip. Throughout there was a fair amount of tea drinking and running required to get the job done â€“ both necessary activities to get me writing (at least the first stage of writing in my head).
The very first piece of material that came out was in the form of a single sentence of text, a muddle of memory that told how, â€œIn New York City, for the first time in my life, I watched snow falling from the sky, saw dinosaurs at a museum, and went inside an MRI machineâ€. The line attempted to mark, through six year old eyes, an important overseas visit to be seen by medical experts at a hospital. What followed was my younger sister Meganâ€™s first story illustration:
Eventually there was a ten minute video, â€œEmmaâ€™s Garden: Growing with Gaucherâ€, with many more lines and illustrations (experience the full story at www.mynormal.ca). Sometimes it takes a large lead up to do something that eventually feels so natural, like you were always meant to just do it, surprisingly similar to running a marathon. Of course once you get the running bug you keep running and one story can lead to telling tales and the birth of the My Normal Project.Â
My Normal is a website for stories from kids with rare conditions. Itâ€™s supposed to be a place for kids to tell their own stories, for amazing parents like Shaunaâ€™s Mom to boast about their beautiful children and for adults to share memories of their childhood growing up with a rare disease. If you have one of these stories, please consider making a contribution or perhaps encouraging someone you know to share. All formats are accepted and if you already have a story online we can still include it in the gallery and link directly to it. Your story need not cover your whole childhood, you could offer just a single significant moment. Donâ€™t hesitate to contact me through the website if youâ€™d like some extra encouragement and or tips preparing your story. Just because we have it in us, itâ€™s our â€œnormalâ€, doesnâ€™t mean it always flows easy. We can support each other as a Storytelling Running Team. Â Â Â Â
I feel a long way off from the goal that I set of getting 50 contributions to the site in one year, by Rare Disease Day 2014, coming up February 28th! Please help spread the word and share at www.mynormal.ca.