I feel like a broken record complaining about the snow. But for the past 6 weeks, it’s all anyone in Boston has talked about. And as ridiculous as it might sound to complain about something as basic as the weather, the 100+ inches of snow that has fallen this winter has made February a grind. As each blizzard has passed and the snow banks have piled higher, it’s been tougher and tougher to find the motivation to log training miles. Despite the best of intentions and a strict training plan, it’s been hard not to feel defeated.
It’s been too easy to come up with excuses to get out of running. Too much snow. Too cold. Too icy. Sometimes the gym has even been closed – either because of the weekly snow emergencies and travel bans, or because the massive icicles hanging over the building made it too dangerous to even walk past.
I was looking forward to the last day of February – not only because it means we’re that much closer to spring but also because it’s Rare Disease Day! It’s a special day to raise awareness and support for our cause, and remember why we do what we do. For the past three years, I’ve been part of a committee made up of current and former R4RD members that spend months planning the annual Rare Disease Day Relay, an Olympic-style relay run throughout Massachusetts, complete with a torch. This year, however, we had to cancel the relay because of the snow. Another defeat at the hands of winter.
But each time I was about to throw myself a pity party, I’d remind myself what we’re doing this for. I’ve looked to our amazing patient partners and the rare disease community, and tried to channel their strength. Time and time again, this community has shown that they cannot and will not be defeated, regardless of the circumstances or obstacles in their way. Reading our patient partners’ stories on this blog or hearing their stories from other runners helps put everything in perspective and provides the motivation I’ve desperately needed this season.
The strength of this community was clear during our Rare Disease Day events. In lieu of running the relay, we asked two patient families (both with children diagnosed with Niemann Pick B) to carry the torch with them as they visited different sites and shared their stories. Meeting these smiling, courageous kids and hearing their families’ stories of resilience made me completely forget that there was ever even supposed to be a relay run.
I was again reminded of this strength last Saturday night. I was messaging with my patient partner, Gaby, through Snapchat – ‘cause that’s what the kids are doing these days. She didn’t know that I was, once again, feeling defeated from a grueling dance audition earlier that day (I’m a dancer first, runner second) that hadn’t gone the way I had hoped. I wasn’t able to run with the team Saturday morning, so I was planning to do my 16 miles solo on Sunday, even though I was already sore and not looking forward to it.
Gaby, wise beyond her 20 years, messaged me, “My family has a mantra that helps us through the hard stuff. It goes ‘If it’s meant to be, it’s up to me!’ Maybe this will help you with your training and during the marathon.”
It was as if she could sense I needed the pick-me-up. So when I set out on Sunday, under the gray sky and between the mountains of snow, I repeated Gaby’s mantra over and over again. Slowly but surely, I clocked those 16 miles. Thanks to Gaby, it was another long run complete, and that many steps closer to crossing that finish line.
After that, I decided to officially leave my February funk behind. March is a new month, and spring is just around the corner (even if there’s still snow on the ground come Marathon Monday).
I write all this to say a sincere thank you to our patient partners and community members. Thank you for sharing your stories. Thank you for continually inspiring, teaching and motivating us.
Fellow runners, whether you’re running Boston or Providence, remember you’re more than halfway through training, and that much closer to all of your hard work paying off. This season I’ve learned that training plans, like anything in life, aren’t going to go perfectly. Something’s always going to get in the way, but it’s how you react to the obstacle that counts. And remember, as Gaby says, “if it’s meant to be, it’s up to me!”
PS. A huge thank you to everyone that came out Tuesday night to my “Painting for Rare Diseases” fundraiser at The Paint Bar in Newton, MA. I’ll let the picture speak for itself but clearly running isn’t the only thing our team is good at 😉