OM STORIES
Great Expectations
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!
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
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.
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!
JillIt’s not about the destination, it’s about the journey
When you read this quote, one you’ve heard over and over, what comes to mind? Do you read it and think, “Yeah, I know that” or “Sure, makes sense” or “What-ever, sounds pretty idealistic”.
For me, I’ve read that quote and answered yes to all three thoughts at one point or another in my life. The challenge for all of us I believe though is to be in the present, to challenge ourselves with full life experiences, to relish them while we are doing them and to reflect back on them when we’ve hit our destination. Whether your destination is a hike like mine to the historic, spiritual place of Machu Picchu or a destination like taking control over your diagnosis of a brain abnormality the quote is quite poignant. For Outdoor Mindset and its members, the destination (the large one) is to take control, to understand, to share and to grow. Outdoor Mindset can be the springboard for making those connections with others who have experienced the journey you find yourself or your loved one or friend on right no.
I find myself reflecting back today on a recent trip to Peru. My wife Libby and I set out on a trek, a journey to visit Machu Picchu in Peru. In all the planning and pre-trip wonderment I found myself getting very excited for our arrival at this historic and majestic place. I built up a vision of the feelings I would have when we arrived. Feelings of accomplishment for having made the long journey, feelings of wonderment at how the Inca created such a massive, intricate and connected place with tools made only by hand and moved by man. All of those expectations of mine were met but one expectation that I was missing became the most important of the event. I had spent little time thinking about what the actual trek, the journey, would be like. This was actually a gift I think because as I reflect back on the trip as a whole; the experiences, the sites along the trail, the waking up to breakfast in our tent, the many ruins scattered along the 30+ mile trail, my amazing traveling partner (my wife) were the most rewarding of the entire event.
My hope in writing this is to share how my recent traveling experience started out with me focused on the destination; ready, waiting to be blown away, to be amazed and surprised upon reaching my destination. Now, looking back I fully realize that the experience and the fulfillment which I will remember for a long time came not so much from the destination but from the journey itself. I encourage you to seek to find the joys in your daily journey toward your life, your friends, better health, and a sense of control over your life and your diagnosis. I wish everyone the best and as a side note, I HIGHLY recommend a visit to Peru and a hike on the Inca trail. (my next blog will share the specifics of the amazing hike, the landscapes, people and history of the Inca Trail)