Sunday, December 19, 2010

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.

Thursday, December 9, 2010

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.

Saturday, December 4, 2010

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!