'Pity party, take a seat... I got 50k to ski'

Amy rockin’ the 2019 Birkebeiner in Hayward Wisconsin.

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.

Adventures With The Head Case Club

Ten percent of Americans live with an invisible disability. Some of us are beyond stubborn about it. As one of 525 members of the Outdoor Mindset group, I place myself in this subset. To join, you or your partner must have a head case – a neurological disorder. For Kyle, the Colorado-based founder of the organization, a hell of a headache led to getting diagnosed with an inoperable brain tumor. For my recruiter Becky, it began with sporadic foot drop and a feeling of being off-balance. Vice President Jake had his first epileptic seizure when he was 11. Local chapter leader Amy also has epilepsy – and is still prone to seizures if she forgets to take her medication, goes indoors and allows herself to relax. Group member Rosie has a dual diagnosis: she has the incurable and rare Charcot-Marie-Tooth disease – and a Chronic Inflammatory Demyelinating Polyneuropathy. When Rosie was first diagnosed, she couldn’t pull up her own zipper. While she has good and bad days, she has since climbed Mt. Kilimanjaro (elevation 19,341).

Rosie’s feats are not unusual for Outdoor Mindset members. In the five years since I joined, I’ve watched Jake complete marathon on and off-road bike trips. Amy and Jake’s wife Jeanie have done crazy long Nordic ski races. I’ve seen Becky emerge from Body Combat classes only to hit the weights or climb the rock wall at our gym. My efforts pale by comparison: I swim. I walk a minimum of a mile and a half daily. I sporadically take yoga classes. Last year, I completed a three-day 50-mile fundraising walk in Cape Cod. On the second day, I swapped a 10-mile return on a round-trip route for lunch in Provincetown and a walk on the beach. It was Donna, a fellow walker – not my feet – that prompted the break. She reminded me that “we are here to have fun, too.”

Ever heard that Lao Tzu quote that a “journey of a thousand miles begins with a single step?” The journey to membership in Outdoor Mindset can start at any age – as long as you or your partner have a diagnosis. Even if you’re not eligible now, you may be later. The Outdoor Mindset website shares the stats.

Each year in the United States:

• Over 100,000 people are diagnosed with a primary or metastatic Brain Tumor

• 181,000 people are diagnosed with Epilepsy

• 10,400 people are diagnosed with Multiple Sclerosis (MS)

• 50,000 people are diagnosed with Parkinson’s disease

• 1.7 million people sustain a traumatic brain injury

As my colleague Larissa Hopkins says, “We are all temporarily abled.”

I became eligible for Outdoor Mindset membership in May 2013. Unbeknownst to me, I had been living with a progressive neurological condition. The first signs came when I lost peripheral vision in my left eye in 2007: Cars visible in my rear-view mirror did not show up on my side mirror as they passed. My vision returned three days after an Optometrist diagnosed it in a word – stress.

Six years later, I experienced bilateral feet tingling, cognitive fog, and numbness. Over three weeks, my symptoms intensified to the point that I could not feel if I had a shoe on my foot or not. After three MRIs and a spinal tap, the initial vision loss was deemed as optic neuritis – a frequent harbinger of Multiple Sclerosis (MS). The MS diagnosis was confirmed by MRI results showing old and new lesions in my brain and one on my spine. I was left with minor nerve damage, but the cog fog dissipated.

I was waiting in my Neurologist’s lobby when Becky recruited me for Outdoor Mindset. At the time, she was a warm acquaintance. I was three weeks out from the same diagnosis she’d been given a year before. At the Neurologist’s office, I received a brochure that included a subtitle that read “MS can stop people from walking,” Becky was having none of it. She made a date for me to join her at the next MS Support Group meeting – and then, the following winter – she convinced me to go for an overnight Outdoor Mindset trip at the Dartmouth College Class of 66 cabin.
We made the trip in January. The temperatures were in the teens. There was a fresh layer of snow on the ground with ice underneath. We parked .6 miles from the cabin and brought in all of our supplies. With the exception of the kitchen sink, there is no indoor plumbing at the cabin. An outhouse in the woods serves as the facility’s only official bathroom. We unpacked and then went out for a hike up Moose Mountain. Borrowing one of Jake’s MICROspikes, I lagged behind the group wearing rain boots with slick soles. Becky, Jake, Jeanie, Rosie and Jeanie’s friend Katie cheered me on as we opted for the more challenging path to the top. As we hiked, I got sporadically wobbly until we reached the summit (’2303 feet). I told the same joke I always do when my balance is off: “Have you heard about the woman with MS who walked into a bar, then into a table and a chair?”

Smores!! What else is there during a winter cabin trip!?

Rosie and I slept up in sleeping bags at the top of a loft. With a small flashlight, I felt my way down a ladder at 3 am, put on slippers and made my way to the outhouse. As I climbed back to my bed, I could feel tears form in the corners of my eyes. I was going to be okay.

Since that night, there have been many more Outdoor Mindset trips – from winter cross-country skiing and spring mud hikes to summer paddle boarding outings and fall corn mazes. I have overcome my fear of needles and now give myself bi-weekly shots. While MS is an unpredictable disease, I have been told I have the relapsing-remitting kind for now – and I’ve had no new surprises in MRI results. To date, I have been unusually lucky.

On our most recent camping trip in late April, I fell while crossing a log bridge and broke the ice over a stream. I drifted for about two feet. There was still snow on the ground. We laughed, and I soon changed into warmer clothes. Hypothermia risk averted. No incident management report required.

When you receive a diagnosis that there’s something wrong with your head, the news is often followed with precautions. Epilepsy seizures lead to driving restrictions. Traumatic brain injury survivors are told to avoid sunlight. The National Multiple Sclerosis Society urges a conservative approach, “Any person with MS who is initiating a new exercise program should also consult with a physician before starting. Periods of exercise should be carefully timed to avoid the hotter periods of the day and prevent excessive fatigue.”

My Outdoor Mindset friends and I fly in the face of this advice. Our brains may be suboptimal in places, but we keep moving. We take our medication as prescribed, but we don’t sit back. It is okay to be impatient and to push yourself. After all, the definition of patient is to be passive:

Patient [prescient]
noun

1. a person who is under medical care or treatment.

2. a person or thing that undergoes some action

3. Archaic. a sufferer or victim

My team members and I don’t stand by waiting to “undergo some action.” For now, we are fortunate to be well enough to venture out on our own terms. As Amy says, “When you have a disease or a neurological disorder, you can handle yourself. It is everyone around you (including family and friends) that can be the stressful component of that diagnosis.” Outdoor Mindset lets us take a break from all of that. When we are together, we share experiences. We do not treat ourselves as if we are fragile. We keep moving – as if we can’t be stopped.  

Chandlee Bryan has been an Outdoor Mindset member since 2013, and is active with the Vermont/ New Hampshire chapter. She holds a Masters in Education, is an undergraduate career advisor by day, and writer of narrative non-fiction at night. You can connect with @chandlee on Twitter.

Adventure Scholarship Report- Ice Climbing with Katrina Toucke

We are so excited to share this story with you. It truly exemplifies what our Adventure Scholarship program is all about. The meaningful experiences shared by OM members help transform how people perceive their neurological challenges, and find ways to overcome them. Our hope is to grow our outdoor-focused community full of shared experiences just like this!

I had so many physical challenges that accompanied my diagnosis of MS in 2011, which left me without a lot of hope for the future. One afternoon while dreaming of hiking (something I no longer could do) I ran across the nonprofit Outdoor Mindset (OM). This organization gave me hope! Their mission was to unite and empower people affected by neurological challenges through a common passion of the outdoors. People just like me! This was not the sedentary support group that I was used to.  These were people that wanted to keep experiencing nature and activities while being part of a supportive community. I have remained active with this organization since 2012.  When I moved to Ouray in October 2018, I contacted them to see if I could start a OM group here in Ouray County. Shortly thereafter, a new meet up group was born!

As people I met in Ouray realized I was reinventing my life from a disabling relapse of MS, they encouraged me to check out a cool organization called Paradox Sports in Boulder, which organizes an annual adaptive climbing program here in Ouray! The program started for amputees, but expanded to other diagnosis and challenges. I am normally afraid of heights, but since my disabling relapse and medications my attitude has changed to “FEEL THE FEAR AND DO IT ANYWAYS”!  Although I was excited at the opportunity, various circumstances limited my budget! I learned that OM had an Adventure Scholarship program, which allows members to identify empowering outdoor opportunities, and request scholarship funding to pursue them. I applied, and was fortunate to receive funding to participate in the upcoming Paradox Sports Ice Climbing event.

The weekend event began at a hotel, where we received our schedule for the weekend, and a briefing of what we were in store for.  I was nervous not knowing anyone and being new to ice climbing, but excited for the experience. Paradox Sports welcomed me, and provided me climbing gear. Many participants had been coming year after year for this event. Despite our challenges (amputee, blindness, deafness, MS, Seizures) we all were excited to feel the fear and DO IT ANYWAY! Outside a storm moved in, blanketing Ouray with fresh snow.

We met the next morning at a local coffee shop for breakfast and drove to the trail head. It was cold and snowing, but that didn’t dampen the spirit. I was told to bring a back pack that could fit all my climbing gear plus warm clothes and a thermos with hot water to stay hydrated.  I swear my pack weighed at least 30 lbs! I soon realized this was a MISTAKE.

The guides helped me as I struggled through 1.5 miles in the snow. Easy is not always rewarding, but I didn’t really think ahead. We were hiking on the perimeter trail, up above the canyon in which we would climb. The technical descent was anchored with ropes to support us as we dropped into the canyon. The Paradox crew had set up warming tents, snacks and water! I admit this was extremely challenging for me, despite my regular hiking since October. The other participants facing their own challenges inspired me. We were all one TRIBE helping each other out this weekend!

Many world-renowned ice climbers had come to teach and guide us all. IT WAS JUST SO COOL TO SEE! We all looked like ants climbing the huge icicles that clung to the cliff walls.  As I watched in awe, my name was called. “Katrina, are you ready?” EEEK…..my adrenaline rushed. Yet, I had no fear, just total excitement for this new experience. I unfortunately (due to short term memory issues) can not remember names, but my guide was AMAZING!  He was kind, patient and funny! I was taught the technique of ‘kick, kick, swing, pull, and squat’. Of course, this new movement took some practice. My being tired from the hike was quickly forgotten as I climbed higher and higher. THEN THE BURN CAME!!! Hanging off the huge icicles caused intense burning in my feet and legs.  My guide laughed and made jokes to take my mind off it. I later learned I was experiencing what climbers call ‘screaming barfies’.

As I hung in the air high above, my guide suggested “plant your heals, stretch your legs, lean back and take in the beauty of it all”.  Down below my belayer and campers looked so small! The canyon was filled with ice formations and other climbers, and the sun poked out making everything glisten and sparkle.  THIS WAS INCREDIBLE!!!! I wished I had my phone for pictures, but didn’t dare. Even though I have short term memory loss, (names and such) I will never forget this amazing experience!  

After a pause, I continued to the top of the canyon wall. I screamed down to my guide who stayed attentive to me hanging on the huge icicles. At my request, he belayed me back down to the valley floor. When I had rock climbed, this was always my favorite, although some people hate it.  Being lowered takes a lot of trust in others. Are they paying attention to catch me if I jump out and fall too quickly? This was a huge lesson for me, as in my past I lost a lot of trust in people. Later that evening at the hotel I visited with participants and listened to their experiences.  I knew somehow this would end up being a sport I would enjoy year after year! I love the combination of pushing myself physically and mentally to reach new heights!  

The next morning I made sure to pack much less gear, which made the hike way easier! The rope climbing into the canyon was fun too. It was a shorter day of climbing. We were scheduled to hit the hot springs that afternoon, which I opted out of due to my MS symptoms. I did enjoy further conversation with other participants. While we each had our own physical and emotional challenges, the common thread between us was to have the best experiences with our own lives!

Driving home, I felt so blessed.  I had just met the most amazing angels, each overcoming their own challenges. Spending a weekend physically and mentally pushing myself with others was a once in a life time experience. I will climb again, and the camaraderie I felt that weekend was a true gift never to be forgotten.

Announcing the OM Adventure Scholarship Winner

We are more than excited to announce the 2017 Winter OM Adventure Scholarship Winner - Marie! 

Marie is an adventurous OM member who enjoys living with an #outdoormindset.

With a passion for an active lifestyle, Marie has experienced so many adventures - not letting her diagnosis with MS slow her down. Between gardening, dancing, Crossfit, and so much more. She is an inspiration to all of us! 

Marie's trip will consist of helicopter hiking in the Canadian Rockies in July! She will be staying at the Bugaboo Mountain Lodge and waking every morning surrounded by glorious mountains. The days will consist of cruising across via ferratas, meandering through flowered mountain valleys, and trekking across glaciers.

We are so excited for you, Marie! (And you may catch a couple of us trying to stow away in your suitcase.) 

Member Highlight: Bryn

When Bryn Overton was 10 years old, she began suffering from her first petite mal seizures. It began in gymnastics when her father noticed that Bryn kept zoning out. It was a scary time for Bryn and her family... But she grew out of the seizures by the age of 16 and epilepsy seemed to have become a thing of Bryn's past. Until she experienced another petite mal seizure while driving, leading to a car accident that scared Bryn and her entire family. Then, about a month after the accident, Bryn experienced her first grand mal seizure. 

"I got really depressed as a kid, I was different. I was so excited when I got off the medications, so getting re-diagnosed with epilepsy really took a toll on me. But it taught me to cope with everything, just deal with what happens. It is what it is, you can't change it. I mean, it definitely takes a sense of humor to deal with what you've been handed, so I just try to keep positive.

It could have been worse."

Who has been your biggest supporter in this? 

"My parents have been there for all of it. They've shared laughs and tears with me. My brother has been a huge support. I talk to him about my travels, when I'm really nervous. He always responds with "It's going to be fine. We're going to take care of you." My best friend, Heather, too. She's luckily never seen me go through it, but she always makes sure I'm okay. 

They're my rocks."

Favorite adventure you have embarked on since your diagnosis? 

"Being a heli-ski guide in Valdeez, Alaska. I get to go out and spend time 30 miles outside of town, working in a lodge and skiing in the backcountry. Getting to

go in a helicopter and ski runs that only a couple of thousand people have skied before is pretty amazing. Best job perks ever. I also got to take a summit flight of Denali in a 10-person plane and fly around the summit. Now, I'm in the Grand Tetons, kayaking, rafting, and horseback riding."

When you get scared or overwhelmed, what do you think to push past that fear?

"Other people can do it, why can't I? If anything happens, I have friends and family that care about me. I just have to do what makes me happy. Becuase I know that the feeling at the bottom of this mountain is going to make me so high. Total adrenaline junkie."

Do you have any dream adventures?

"Oh yeah! Heliskiing is checked off the list. Southeast Asia is on my list, which I actually just got my passport for. 2-3 months of backpacking. I want to go to Italy and eat pizza and pasta. Oh and see the Alps, and climb in Yosemite. A big wall climb, like El Capitan."

What would you say to others living with epilepsy?

"Whether you have your seizures under control

or not, just work to get through every day. Remember the good times and cherish every minute you live without a seizure. You can lose it any day. But every day is a new day."

Bryn is currently preparing for an extended backpacking trip through Southeast Asia and living big every day. 

Happy trails, Bryn!

Introducing the OM Adventure Scholarship!

Happy New Year!

The year end gives us time to reflect on the year, and take a big breath to settle the mind and return to a positive state of being; whether we experienced something tragic, enlightening, or downright dull. 



With the New Year, comes the view of the horizon. It’s time to look forward to a better future and plan to take action.
 


At OM we look at the New Year as an opportunity to reengage, reignite, and re-imagine the future.
 


To start, I and the Executive and Advisory Boards will be having a retreat on MLK weekend. We will be reflecting on our accomplishments, examining our current state, and planning for a big future! These are exciting times at OM! And in the spirit of reigniting the spirit, I am excited to introduce a brand new program:
 


Introducing the Outdoor Mindset Adventure Scholarship

!


The power of the outdoors to lift our spirits, to clear our thoughts and center our state of being, in history, was a gift that only gods could give. For many of us, the time we spend outside and in nature defines our character and how we view the world. We may dream of climbing that special peak, travelling to that amazing place and living that once in a lifetime experience. These experiences bring strangers together and friends closer, with memories and feelings that will be shared for the rest of their lives. It is at these precise moments when you take a deep breath and say, “this is what life is all about”!
 


Outdoor Mindset thrives on those moments and understands that the impact these extraordinary experiences have on our health and wellbeing is priceless! OM never intends to compete with the gods, but perhaps we can help provide the funding for you and a friend to get closer to experiencing a special peak, an amazing place and a once in a lifetime experience – an item on your bucket list that you have always wanted to complete.
 


Our goal with the

new Adventure Scholarship

is to help support OM’s mission to enhance the quality of life of our members, engage our members and encourage our community to connect with one another and get outside and live big!
 


El Chalten, Patagonia. Put it on your Adventure Scholarship

bucket list!

OM will be awarding at least one Adventure Scholarship per quarter. We will be awarding

at least $500

per Adventure Scholarship! Applications will be accepted starting today, and applicants will be given u

ntil February 12th

, to submit. Applicants must be an OM member, and the Adventure Scholarship must be used for an outdoor activity with at least one other OM member. Keep in mind, anyone can become an OM member and it’s FREE! And most importantly, the Adventure Scholarship awardee must have a great time!!!
 


Please click here to view the official rules and apply. Good luck!

 

Don’t forget to Participate, Engage and Promote! 
 


I can’t wait to see you outside and look forward to sharing more exciting news in the coming months!


~Sean