On the Right Track

I arrived in Denver last week and traveled to my previous hometown of Breckenridge, CO for some days of fun and time with friends before heading into the hospital for surgery. I was fortunate enough to meet up with a lot of special folks in my life there, ski into a mountain hut for a night, and enjoy five unbelievable powder days on my tele skis!

I’m replaying all these things in my mind as I type from my hospital bed. I have been in University of Colorado Hospital’s Neuro Monitoring Unit for the past six days after a successful craniotomy to place electrodes on the surface of my brain. Pretty amazing stuff.

I won’t lie, coming out of surgery feels like crap! You have to tough it out. My new costume has some pretty interesting perks and characteristics too. Imagine a hybrid character influenced by Lawrence of Arabia’s turban, Lord Gandolf’s beard, and the infamous droid C3P0’s intricate wiring. Yeah, that ought to paint an accurate picture of my get up.

Since arriving at the hospital I’ve been reflecting on the journey that brought me here. It’s been a humbling experience. My professional career has always been about serving others and now my situation is turned around. These past several months I have been extremely lucky to have my wife, family and friends helping me through every step.

My Guide Diane has always steered me straight from her own experience with her temporal lobectomy. She’s never once sugar coated things or held back important information. “It’s gonna hurt like hell Jake,” she told me once. Those words raised my nerves for a long time while traveling down this road. Now I’m here with a couple of floating sections of skull with wires poking out of my head, and glad she put things so bluntly! I’m prepared to face whatever the docs throw at me.

I’ve been telling every doctor, nurse and technician about Outdoor Mindset (OM) since I got my room here. Kyle brought over OM business cards and a way cool poster that our marketing folks have been working hard on. My wife Jeanie has put those things into good use while giving our room a holiday touch. We have lights, stockings, and ornaments!! Our room is now OM central. It’s pretty hard for the specialists not to ask about it. When they inquire, all the feedback I get is positive. Most are uniquely drawn to the Guide Program we are establishing.

Last week Kyle, my brother, and I patiently awaited ski patrol’s opening of the Lake Chutes at Breckenridge Ski Resort. If you hit it right, and are willing to boot hike up a steep ridge to access the terrain, there are plenty of fresh tracks to make in untouched snow. On that day I took advantage of everything I could get my hands on. As we descended the chute that day, each laying down our own set of tracks, a few things became really clear. I’m on the right track was my first thought. I couldn’t be in a better position going through this neurological surgery procedure thanks to Outdoor Mindset, my wife, family and friends. The second realization that hit me was just how impressive a set of tracks Outdoor Mindset is making as it starts choosing its own path as a non-profit organization. The board of directors has spent the last year working its tail off to make this organization real. We can see the first summit and the organization is on its way to helping a lot of people.

Great Expectations

As of today, I am 7 months pregnant. Pregnancy has been great - aside from the normal side effects like morning sickness and mood swings - and it has been an experience unlike any other. It is amazing to take care of myself with purpose and feel the resulting human being growing inside of me. I often think of all the possibilities for my son and it is fun to imagine what he will look like, what he will be interested in, and the adult that he will become. Unfortunately, it is also terrifying to anticipate and prepare for the possibilities like multiple sclerosis, epilepsy, autism, and a whole host of other potential neurological challenges that infants may face.

The prospect of having a child born with any neurological disorder is scary, and being associated with an organization like Outdoor Mindset has made me realize why it is so important to have a strong community of support. It is invaluable to have the perspective of someone that has shared the same fears and been through all the ups and downs that go along even with a healthy pregnancy. I continue imagining all the great things my new son and my growing family will do, and I know that we will continue to have the support that we have been blessed with so far. Although Outdoor Mindset connects people during challenging times, we also celebrate the connections we have during the most joyous times. This is what we wish for all of our guides, travellers, supporters, employees, friends, and family. I am excited to bring a new life into the world because he will be greeted by unparalled love and support. I know that this support will be magnified as we approach any challenges that we are sure to face.

Heads up doc, I’m ready to go!

More than a year has passed since the idea of Outdoor Mindset was tossed around by founder Kyle Martin. It has been a privilege and a lot of fun to be a part of the journey to turn an inspirational idea into a functioning organization. The folks who have made it all happen are a special crew, and I feel lucky to be part of the team behind the vision! All the hard work is paying off and Outdoor Mindset is on its way to affecting lives everywhere with its new Guide Program!

My participation and belief in the vision and mission goes way beyond fulfilling a personal philanthropic ideal. I was diagnosed with epilepsy when I was eleven. My family figured it out when I fell off a horse as a kid. My dad is a doc, and he was pretty sure he just witnessed a seizure. When they took me to the neurologist and ran some tests, sure enough, I was diagnosed epileptic. At the time, the diagnosis didn’t really affect me. I went on living my life, doing all sorts of crazy stuff on bikes, skateboards, snowboards, and playing hockey with no limitations.

Having epilepsy never had significant negative effects on my life since the majority of my seizures happen while sleeping. I won’t lie to you. The ones I do have while awake are pretty embarrassing. Particularly when I’m on the ice during a hockey game, drop in front of a crowd unexpectedly, slide across the ice shaking, and slam hard into the boards! Well, I guess for spectators it could be rather entertaining.

My epilepsy has never been controlled. I have failed medication after medication. Weekly seizures have been a part of my life for the past twenty-seven years. About two years ago I began to notice some changes in the presentation of my seizures and things that were WAY out of the ordinary for me. My memory began to fail, I had trouble concentrating, and I started having anxiety and panic attacks. Something was definitely up! I was referred to a team of specialists in Denver, CO. They put me on a ‘cocktail’ of multiple meds, but the seizures persisted. Then they mentioned brain surgery as the best next option. They wanted to take out a part of my brain. Now that freaked me out!!

After a long indecisive contemplation of which way to move forward, I opted to have the surgery. To my surprise, a few board members at Outdoor Mindset knew someone who went through the same situation I am facing now. Her name is Diane Van Deren and she had a temporal lobectomy ten years ago. Diane is currently a professional adventure athlete sponsored by The North Face. Now fully recovered, she travels the world and competes among an elite field of endurance athletes. I can't tell you how valuable her friendship, advocacy, and first hand experience has meant to me over these past several months. Diane's support, spirit and determination are an inspiration to me. She shoots me straight from her own experience in what to expect from the surgery, what to anticipate throughout the recovery process, and how it has impacted her quality of life.

The new Guide Program that Outdoor Mindset is launching is the real deal! Diane’s and my relationship is a testament to what a difference it makes to have support from someone who knows the ropes of neurological diagnosis.

Diane, Kyle, and I are headed on a hut trip in the central Rocky Mountains of CO for a day of backcountry skiing the night before I head into the hospital. I figure after that I can walk through those front doors with an ear-to-ear grin, goggle tan, and powder burned face that says ‘BRING IT ON’! Once it all goes down I hope to become a Guide myself, and offer my own experience to someone who needs support. Check out Outdoor Mindset and our Guide program - we’re gonna be big!

The Book: Mindfulness by Ellen J. Langer, Ph.D

This year I was at home for Thanksgiving and found an old book that I had from my college years. One that I bought with good intentions I'm sure but then never read it. I decided that I should see what it was about.

The books title: Mindfulness by Ellen J. Langer, Ph.D. A Professor of Psychology at Harvard University and the author of The Power of Mindful Learning. As I started reading it, I was quickly hooked. I often find myself doing things out of habit, or mindlessly. Some days I make it to work without even really remembering the drive. This book speaks about being mindful of your actions and surrounding. It has some fantastic real world examples of what can potentially happen if you are mindless (or on autopilot). Below is a quick excerpt from the book. No lead in necessary, it will tell you the story.

“My first experience of the grave risks of mindlessness occurred while I was in graduate school. My grandmother complained to her doctors about a snake crawling around beneath her skull and giving her headaches. Her descriptions were vivid and figurative, not literal. That was just the way she talked. But the young doctors who took care of her paid little attention to what this very old lady from another culture was telling them. They diagnosed senility. Senility comes with old age, after all, and makes people talk nonsense. When she grew more confused and unhappy, they recommended electroconvulsive therapy (“shock treatment”) and convinced my mother to give her approval.

Not until an autopsy was performed did anyone detect my grandmother’s brain tumor. I shared my mother’s agony and guilt. But who were we to question the doctors? For years afterward I kept thinking about the doctors’ reactions to my grandmother’s complaints, and about our reactions to the doctors. They went through the motions of diagnosis, but were not open to what they were hearing. Mindsets about senility interfered. We did not question the doctors; mindsets about experts interfered.”

Just think about it.

~Kelli

Muchos Gracias

While Outdoor Mindset’s official incorporation date is April 15th (ish), those closest to the action realize the wheels were in motion starting November 2009. Reflection of the last year and being thankful for all that it has been is key during this holiday week. My health challenges and Outdoor Mindset are no exception to this. How did it all go down from my perspective? Last year, a few strange things, mostly related to numbness in my right arm and leg, led to a doc visit that wasn’t your typical turn your head and cough type of day. When I was told there was a possibility of Multiple Sclerosis, then later diagnosed with a brain tumor (Punkus Uncus *not an official term); I knew my brain was officially BUSTED. Anger and self-pity did not exist, but I did have an ever present fire in my gut that was not about facing my own mortality, but was about the reality of dealing with a neurological challenge that could potentially hinder the active way of life that I love. It was personally life-changing and tough to absorb, but even more so it was mind boggling to think of the many others that are faced with that reality every day. So many folks share an addiction to live life to the fullest, enjoy the outdoors and strive to find adventure in every moment. This core lifestyle and the fear of losing these opportunities is top of mind anytime a medical challenge involving the brain is diagnosed. As I traveled the journey of owning my diagnosis and the process involved, a void of an easy way to connect with others that have gone through a similar challenge while continuing to enjoy an active way of life surfaced. I was lucky enough to have a great friend (OM’s lead finance dude, Eric) guide me through the process. We now share the same neurosurgeon, continue to bike together and sit on the OM board with this experience in our back pocket. I can truly say that having Eric as my Guide helped direct my situation towards a positive path.

Now, the true roots of how Outdoor Mindset was built. For several weeks after my first doctor visit, connecting the dots was a focus. I continued to see how random occurrences would collide and shed light on some type of master plan. As I met with several friends, a few big items surfaced:
• Holy smokes I’m lucky to have such great friends
• Each have their own talents to bring to the table
• All have a sense of altruism, a tie to people facing neurological challenges (or face one themselves) and share a love for outdoor adventure
• Sometimes we’re inappropriately funny....even more of a reason to start an organization.

Over the last year, then entire group worked together to build OM. Jake would talk about his will to encourage people to overcome the stigma of a diagnosis by living big, Eric would tell stories of how the opportunity to give back to someone with a similar diagnosis has been a driving force since a tumor changed his life, Chris would discuss how being outside and active tunes him into the world and inspires...the list goes on and we were 13 people strong, nothing was going to stop the brain train. Through these “brainstorming” (sorry, I can’t stop) sessions, a couple of needs surfaced:
• When you’re addicted to an active, outdoor-loving, adventurous life and you are hit with any diagnosis of the brain; immediately you’re confronted with the question “can I continue to live this way of life that I love so much? bike, ride, run, climb, etc... How do I really know?
• Then, many begin searching (mostly on the Internet) for information on next steps. What are the doctor conversations going to be like, what now, treatments, relationships, how do I tell my friends/family, etc. Tons of research papers, forums, support groups, and statistics are out there. But, how do I truly navigate?

We realized the first opportunity for inspiration wasn’t about research papers or statistics, but it was about connecting with someone that has the same diagnosis and a mutual passion for the outdoors. I’m a sucker for quotes and one of my favorites is “Don’t measure the size of the mountain, talk to the one who can move it.” Or in this case....has moved it....or is moving it.

We’re trying really hard to make sure newly-diagnosed folks (Travelers) never feel like they are all alone locked in an outhouse.....sort of like Kellyn was during our board retreat back in July:



Outdoor Mindset is an organization focused on building programs (our “Gear”) around those needs and embracing that opportunity for inspiration. We will do that through our Guide Program, an Online Community, Adventure Programs and Regional Events. We’re using this day of thanks to officially launch our Guide Program. Check out our site for more information. Join the brain train (there I go again) and either register now to become an OM Guide/Supporter/Traveler or spread the word!

Many people believe in the route we’re taking and have joined us by Donating as well. If you are one of those folks, we thank you from the bottom of our hearts (and brains) and guarantee that every dollar, every cent, will go towards our Gear focused on our Summit/Powder Day/Big Fish of envisioning a community of individuals affected by neurological challenges leading active lives with no limits. We strive to change people’s perspectives of a neuro diagnosis! And dog gonnet, we plan to do it.

To our friends and family, thank you for not saying those 11 little words when this all began:: “Are you freaking crazy? Starting a non-profit in this economy...seriously?”

To that original group of folks that built OM and continue to volunteer their time and money (you know who you are), I can’t thank you enough for being along for the ride, believing in our mission, acting on it with such passion and building an organization that I know, I know it in my heart, is and will be amazing with the ability to help so many.

With my serious face on a for a bit, I look back with a heavy heart remembering how many people were affected by my personal situation. Friends, family members, work colleagues, etc.; all of which stood beside me over the last year. My journey continues, but my appreciation for this support is unexplainable. Btw, not necessarily the let’s sit in a room and talk about it support; but the let’s climb a mountain, travel to New Zealand, snowboard behind a horse and live it up support! I’m humbled my how lucky I am in this amazing life.

We give thanks for powder days, killer mountain bike single-tracks, fly hatches that yield big fish, high mountains that instill a sense of accomplishment, rapids that provide a gateway for kayak thrills, winding mountain roads that make it cool to wear spandex and for access to the outdoors that allow all of these things to be possible.

We give a huge thanks to all of those folks that provide inspiration to us. The list is long, but includes the many people that have either beaten a neurological diagnosis or currently manage their situation successfully by continuing the way of life they love despite whatever challenge is tossed their way. Through commitment and strong will, so many people ensure an obstacle related to their health is not who they are; but merely something that exists as part of their life. I often blurb that some people have a bad back or knee; I just happen to have a bad brain. To me, that is the key; realizing we’re all part of something bigger and embracing the amazing opportunities that any obstacle places in front of you. To the inspirational people that make this a reality; thank you so much for your determination. Oh yea, we think a shared passion for outdoor adventure is a core element to this type of mindset as well. Get it? Outdoor Mindset...

Here’s to exploring, enjoying and being thankful for the journey.

KM

The best way down isn’t always the easiest way up.

Last weekend, Breckenridge Mountain opened up for the season. It’s always an exciting day when the lifts start running, and ski season officially begins. You can feel the excitement in the air of hundreds of eager skiers and riders ready to hit the slopes. But sometimes it’s getting away from those other skiers and riders, and making your own trail with friends that has the best reward…. Even if there are no chairlifts involved!

After taking a few runs on Peak 8 with nice groomed trails and long lift lines, a crew of us (some OM’ers and some friends) decided we wanted to check out the unopened Breck terrain of Peak 10. We were lucky enough on Saturday to even drive up to the Falcon Chair, which gave us a head start on our hike. Putting one foot in front of another while battling our way up Peak 10 and sweating in our multiple layers despite temperatures in the teens, we climbed around 1000 vertical feet in an hour to get to some untouched snow… POWDER, if you will! J That’s every skier and rider’s dream in early November! Every step of the climb was worth it, when you looked down at the untouched run with no one on it, knowing that you were about to be floating on top of the powder on the way down.

It was so amazing that we wanted to repeat the experience on Sunday (before we watched who was going to get the coveted W between the Bills and the Lions). When we tried to drive up to the Falcon chair again, we found snow guns in our path. The way up wasn’t going to be as ‘easy’ as the day before, but we didn’t let that get in our way. We took a different route, and hiked up to the Peak 9 restaurant to hit some more new snow. Different and more difficult route up, but with another amazing way down. See for yourself:

Here’s to looking forward to more hikes up the hill and more powder on the way down! Can’t wait to see you all on the slopes this winter and get some runs while talking about what Outdoor Mindset is up to!

Jill