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!
Saturday, December 4, 2010
Heads up doc, I’m ready to go!
Labels:
brain surgery,
epilepsy,
mentors,
outdoor adventure,
Outdoor Mindset,
seizures
Subscribe to:
Post Comments (Atom)
Awesome post, Jake. Positive thoughts being sent your way.
ReplyDelete