Yesterday I skied a 20k race called the ‘Stowe Derby’ – a cross-country ski race that starts at the top of Vermont’s tallest peak, snakes down a ‘green circle’ (easy) ski run, passes through a nordic ski center, and finishes on a bike path down in the town of Stowe. It was my first year doing the race, and I decided to raise money through my participation for my autoimmune disease, Myasthenia Gravis. I was very inspired by a number of MG patients I met at last year’s annual conference; many of them have raised money for our disease, mostly through organized events called ‘MG walks.’ MG walks are thusly named because many Myasthenics have a hard time walking for long periods; so walking for a cure is a symbolic way for people to support the cause. I’m fortunate not to have any problems walking, so I decided to use this race as an excuse to raise money while pushing my limits a bit (this was my first XC race ever, and by far the longest distance I’ve ever skied.)
Here is my pre-race interview:
Then I got on the chairlift in my skinny skis:
It was a warm day, and the sun beat down on the motley group of skiers gathered at the top of Stowe mountain – many appeared to be experts and were clad in sleek, stretchy race suits. Another man had a rubber horse head mask on along with jeans, and yet another had some sort of glittery knickers (American usage of the word.) They started us in groups of 5, so that pile-up crashes around the turns would be minimized.
Once they set us free, I flew down the winding ski run on my skinny cross-country skis, tucking along all of the straightaways, gathering speed and passing a few people and getting passed. I stood up and slid around each turn, wobbling here and there but never falling. I waved, smiled and hooted ‘woo’ at the spectators who were gathered around the most harrowing curves to watch the inevitable sloppy falls. I didn’t give them what they wanted – in a race known for its extravagant spills, somehow I kept myself on my two skis for the entire race (thanks, Dad, for starting me skiing early!) I felt in my element, exhilarated, and refreshed.
After saying hello to my husband and friend Laura at the bottom of the downhill ski area, I headed into the Stowe nordic center trails. The trails were rolling, with some fun short downhills and a few absolutely brutal uphills. I wheezed and pushed through this section of the race, and came to one last, long, tunnel-like downhill in the woods. I was skiing behind 4 or 5 people. Suddenly, almost all at once, they all shot off the trail and fell into the soft snow on the left and right. I’m not sure what happened, or if this was some kind of flash mob, but I made it past them.
Soon after I saw Nick and Laura again for a water-up, as I moved into the long, flat section of the race:
On the flats, I spent almost the entire time alone. I got into a steady routine and finally had some time to think. I coasted past old barns, a half-frozen river, soft white snowy fields. I felt the air fill my lungs, and I thought of my friends who have MG breathing crises and have to be hospitalized. There’s a lot of dysfunction in my body, but yesterday I celebrated everything that is still so amazingly functional. My nerves and muscles worked in sync to propel me forward. My inflamed joints stayed quiet, at least for awhile. My guts had been angry earlier in the day, but they cooperated during the race. I dedicated body parts to my MG and e-patient friends – my joints to Britt, Alan, Emily…my toes to Jess…my lungs to Laura…my heart and blood vessels to Sarah…my two working legs to Joe…my muscular strength to my MG brethren who couldn’t have participated in this race. My eyes were strong – no double vision, no droopiness. I silently thanked my neurologist and herbalist who helped me get to this point.
I appreciated this time to focus my thoughts and energy for a few minutes on the patients (MG and otherwise) who have inspired me over the past two years. It made crossing the finish line feel like more of a meaningful accomplishment.
My biggest thanks go to my husband Nick and friend Laura, who supported me today, and to all of the very generous people who donated to my race and are enabling me to give over $1600 to the Myasthenia Gravis Foundation of America. I’m so proud to be able to give a substantial amount of money to a cause that can have a direct, positive impact on patients like me, and I’ve been overwhelmed with the outpouring of support from my friends and family. What a great day.