Most days I feel like a “normal person” but sitting at my annual neurology appointment yesterday, I remembered that in fact I was not entirely “normal.”
After my appointments I like to spend the rest of the day by myself either barricaded in my house or going on a run with a dog. Yesterday, I chose the barricade in my house option because the weather was particularly gross and a nap with my pup sounded like a really good alternative. As I settled into my little pity party for one and a nap, I reflected on my life and realized that I should really just stop. I had just done a 50k ski race in February and that is something that not every epileptic could do.
A little more about me will give you some context as to my inclination towards an annual pity party. I was diagnosed with epilepsy when I was 22 and working on a ranch in Jackson, WY. I won’t bore you with all the details but needless to say, suddenly having your driver’s license revoked and watching those around you look at you as if you might break at any moment was enough to throw off any independence I felt. After years of stubbornly remaining out west where the medical care was dubious, I moved back to NH. Despite growing up here, I knew no one and I certainly did not know anyone else with a condition like mine. Enter Outdoor Mindset!
My very first experience with OM was doing a 5k running race on Mother’s Day in 2013. It was the first time I met someone with epilepsy! I had someone to compare notes with! Someone who took the same drugs I did! I have never been more excited about someone else having epilepsy as I was in that moment. I spent the entire run talking with Jake Quigley who ran the OM chapter in Hanover, NH.
Now, for the star of this post-The American Birkebeiner. Every year in Cable and Hayward, WI a cross country ski race takes place. The main even is 50k long or 31mi for those of you not into the metric system, and it attracts thousands of skiers from all over the world. I took on the challenge in 2018 as a life bucket list item and had a pretty good time. It was certainly hard but not impossible and I felt pretty good about myself afterwards. For months I had spent each day either running, biking, roller skiing, hiking or skiing on snow. I love to do all of those things so training didn’t always feel like training. That being said there where days I had to drag myself out the door. Finding the mental motivation after a long day of work could be a real challenge. When I finally finished the race I remember crying as soon as I saw my friend who had also raced that day and finished ahead of me. I was so overwhelmed with the elation of finishing and knowing that all the hard work had finally paid off. I knew that I wanted to do it again in 2019 but was having a hard time finding the motivation to put myself through hours of roller skiing and running again. I got talking to Jake and came up with the idea of doing it as a fundraiser for OM. Jake and his wife Jeanie had done numerous bike races and rides for Outdoor Mindset so it seemed like a good example to follow!
I am not going to lie-skiing 50k is hard. It is defeating. It is taxing on the body not only because of the distance and discipline (I did it on skate skis) but also because it is cold. However, it is also really rewarding to know that as I was skiing along or slogging up a hill that I was lucky to be doing something that many people with neurological diagnosis are simply not able to do. When things got hard I would just have a little conversation with myself. “Hey, self, get it together. You are doing this for other people. Who cares if your legs feel like concrete?! You have worked hard for this independence and ability and other people are not so lucky. So, get it in gear and finish.” I honestly said those words in my head. Anyone who has ever done any race of any kind, especially a xc ski race, knows that you can physically prepare as much as you want but at the end of the day, if your head is not in it, it is going to be a painful experience.
There were many parts of the trail where I just thought about how lucky I was. All I have to do is take a pill 2x a day. I skied along some early flat spaces in the trail and had a moment with myself where I reflected on other people’s efforts when we take OM members out on adventures. For some folks, an hour drive to get to a meet up activity alone is incredibly taxing! For others the heat of a midsummer hike can be all but debilitating. Surely, if they could overcome those obstacles to maintain their outdoor lifestyles, I could manage 50k. And I did! I finished! The new snow that fell a few days beforehand slowed everyone down so times were much longer than the previous year (including mine), but I didn’t care. I had just raised money for a non-profit that had helped me over the last five years and hopefully showed people that having problems with your head is maybe not always the obstacle we think it is.
For anyone feeling like they are attending their own pity party, I highly suggest reaching out to Outdoor Mindset. You can still have a pity party if that is on your agenda, but now you will be able to have a conversation at your party and the venue will most likely be somewhere outside rather than your couch. You can talk about spinal taps, meds, CAT scans, MRIs, EEGs and no one will look at you funny! You can lose your balance while on a climbing adventure and no one will think less of you! It is incredibly liberating to be around other people who share some or all of your challenges. Not only is it liberating, but you get to be outside! Being able to maintain my active and outdoor centered life was the most important thing to me after being diagnosed. I felt like this new found love of mine was being ripped away and I was pretty mad at the world for a time. In 2011, during one particularly dark time in my epilepsy journey, my sister got married. I remember having a hard time being gracious and engaged because I was so angry at my diagnosis. I missed events due to med problems, which made me resentful. I look back now and realize that finding OM earlier would have alleviated some of that anger. OM helped me get out of that funk in 2013 and I met some sweet peeps along the way! OM allows me the freedom to talk to others in my same boat, learn strategies for shared struggles and return to other parts of my life with grace and energy.
Amy Franklin lives in Plainfield New Hampshire. She is the Ambassador for the Vermont/NewHampshire Outdoor Mindset meet up chapter. Amy also is a high school nordic ski coach and owns her own gardening business.