OM STORIES
Take a Moment to Feel Alive and Thankful this Holiday Season
HAPPY HOLIDAYS TO ALL OF OUR OUTDOOR MINDSET FRIENDS AND FAMILY!
This year, don't let the craziness of the holidays overtake your life. With family coming into town, gifts to find, things to do, houses to clean, and meals to be made, let's all not forget to cherish the little moments during the holidays that should be the primary meaning of this season:
to give thanks and spend time with those you love, doing the things you love, which hopefully also includes some R&R in the outdoors, as well.
To help put this in perspective, we have a guest blog from one of our fabulous Outdoor Mindset Guides, Natalie. In her story you'll read below, you'll find that amidst recovery from brain surgery (and you think the holidays are stressful!), Natalie found herself in the middle of a lake in her kayak giving thanks for every second out on the water, feeling alive and thankful for her neurological experience and the new path her life was on. Take this inspiring and amazing story with you this holiday season and give thanks for the many blessings you have in your life, and take on a new appreciation for the little moments we should all be thankful for.
Here she goes:
The "New Normal for Natalie"
My journey with neurological challenge began in April of 2005 with what the radiologist report said, "accidental find" - a brain tumor in my right anterior temporal lobe, about the size of a golf ball. It was a Friday morning. I was so confused about the information they handed me on the paper that I went home and began to google all the types of tumors and the impacts to the areas of the brain that may be affected by my type of tumor. What I found was pretty upsetting and I didn't have anyone to talk to about it. I didn't want to scare my family and yet, I needed emotional support. Hearing "brain tumor" is a pretty scary thing and the thoughts of "Okay, now what the hell do I do?" are the ones that come first, finding all the information you can and then of course determining the approach with your doctors is the process that isn't so easy to have patience to endure. I wanted answers quickly and found that in some cases, they simply don't have answers to provide. Plus, everyone and every situation is different. I was thankful cancer was ruled out and still, I had a tumor that caused "mass effect" in my head.
My approach was to rule out some of the serious side affects that "may" happen if we waited and watched my tumor for a while. My wonderful team of doctors (really love them) admitted that they really didn't know much about my type of tumor and given, that it represented less than 1% of all intercranial masses, they were very rare. I truly appreciated their direct, honest feedback and the amount of time they spent with me to understand what I was facing.
With MRI's planned every six months (unless new symptoms appeared) - we "watched" my tumor. We watched it slowly grow. I knew it was growing given the increase in pain I had been experiencing from the intercranial pressure, it's similar to the symptoms of meningitis. I could deal with those and often wondered what a "regular" headache would feel like. My pain tolerance began to increase and dealing with the pain became routine. All this while working full time in a management executive role - and being a single mom to 2 wonderful boys.
We watched it... In the mean time - I continued to do the things I loved outdoors; fly fishing, kayaking, hiking, water/snow skiing, boating, Occasionally, I would be debilitated with the pain and be in bed for a day or two but I was able to get back into the swing of things quickly. I rarely missed a day of work and learned to push through the pain or "nut up" as my sons would say. ;-)
In the fall of 2008 I started to feel different. The painful "headaches" were getting more frequent, lasted longer and I became WAY more sensitive to light and noise. I also noticed my sleep was far more interrupted.
On December 19th, 2008 I experienced my first partial complex seizure. Everything changed on that day. I was alone, had just come down the stairs of my home when out of blue, with no warning my head/neck were rigid and my chin was close to my left shoulder, my left arm was rigid and I couldn't move it. I felt my way to the bathroom with my right hand, sat down and waited. The seizure lasted about 60 seconds but seemed much longer. I was confused - I didn't know what to do. In my post seizure funk, I drove to work.
It wasn't until I was at work for a while that I realized what I had just been through. So, I went back home and called my doctors. I was immediately put on Kepra and a few other drugs. The MRI revealed my tumor had grown to about the size of an egg and surgery was scheduled. I asked for the surgery to be in March of 2009 so that I had time to get my "house" in order. The list of risks from the surgery was long. After you read "death" - all the other ones seem like pretty good outcomes.
The seizure clinic revealed I was having partial complex seizures through the night as well. No wonder I couldn't sleep. And, that the cause of the bigger seizure was the growth of the tumor.
My surgeons did an amazing job with the craniotomy. Prior to the surgery they said there was a 50% chance my tumor would come back. After the surgery, they felt it was less than that and had hope I wouldn't need surgical intervention in the future. But again, we're "watching" it.
I had many challenges to face before, during and after the surgery. The most important message I think I can share is to learn to accept there will be a "New Normal" for you when you're faced with a neurological challenge. Folks would ask me if I was 100% - back to normal. I think it took me a while to realize that through such adversity and challenge I could not help but be changed as a person. After my recovery, I was more grateful for everything from the smallest thing like birds visiting my bird feeders to being able to hold my sons. I looked at everything differently. My New Normal was a gift.
This picture of me in my "cloud" kayak was taken about 9 weeks after my surgery. It was the first outdoor experience I'd been able to have after my surgery. It was a turning point for me in my recovery. I had many weeks of confusion, fear, worry and stress. Because my tumor was pushing on my emotion center - with so much pressure that it actually also thinned the skull wall - I felt confused a lot and I suffered short term memory loss. I would often wonder "Am I feeling the right thing, did I say the right thing, was I empathic, did I even know how to be empathetic any more....... etc." But I couldn't find the words to share that with anyone. I would express that frustration in other ways towards those that I loved. Like complaining that there were no pictures of my recovery. What that really meant was - I need some evidence of what happened, I have no memory of it. But again, I couldn't find the words to say that...
Being on the lake that ONE day in my kayak and my belly boat fishing was the first time after my surgery where I didn't worry. I didn't feel like a victim of a brain tumor. I was ALIVE. I savored the warmth of the sun on my face, I prayed to God and gave my thanks for getting me through my challenge, I dropped my hand in the water and appreciated that my hands worked, I cried at the beauty of the calm mountain lake water and each fish I caught (and released) I would kiss them and thank them for biting my fly. I didn't worry about how to tie my flies or how to cast - it came naturally to me and I was grateful for every single second...
That trip fly fishing was by far the biggest catalyst in my healing. After that trip, my short term memory challenges began to subside. I had renewed hope and strength to fight. I was able to get off most of the meds by June and went back to work. I traveled internationally to Sweden in mid June and kayaked there as well.
Being outdoors, in nature - especially around water and then doing the things that I used to love prior to my surgery helped me realize that I am settling into my "New Normal" and it's pretty damn cool to come out the other side of all this as a survivor.
I was introduced to Kyle, from Outdoor Mindset, by my surgeon - we have the same team of doctors. I am honored to be part of the Outdoor Mindset team and cannot express enough gratefulness for a group like this existing. Being a Guide also helps me by being able to "give back" or "pay it forward" - by sharing my experience. After all is said and done - when you connect with another person facing a neurological challenge, no matter where they are in the process - you GET IT. There are no words that can be expressed to share what that connection is like - it's deep, powerful and a feeling of relief comes over you that you don't have to try and explain what is going on in your head. It's SO helpful to have someone to talk to - someone who has been there. I hope I can be that "someone" for many folks and I would feel blessed to be next to you in your journey.
~Outdoor Mindset Guide, Natalie
I don't think any other words are needed.
Live BIG this Holiday Season and thank you for everything you do,
Jill
Team Outdoor Mindset Goes to Moab
So...this is how I was going to start:
Outdoor Mindset will have a presence as “Team OM” in the Adventure XStream Moab Adventure Race. J
ust as we’ll be navigating our way through the race using nothing but a compass, map and a trust in our designated navigation point person; Outdoor Mindset’s Guide Program has great hopes to inspire our Guides to leverage their own experience in facing a neurological challenge to help navigate OM Travelers through a new diagnosis.
But then I decided that while it’s a good one, I rely on metaphors WAY too much when writing blogs, so forget that idea. Next, I thought about writing this:
While I’ve participated in a few races in the past, for me, the Moab Adventure Race that Team Outdoor Mindset will be competing in will be the most difficult challenge to date, by far. Over 50 miles of kayaking, mountain biking, trekking, rappelling and navigating takes another level and different style of training than I’m used to. However, as will be true during the race; when I’m on my last few miles of any given training day, what pulls me through is thinking of the many people we hope to serve through our Guide Program that find it difficult (or impossible) to enjoy these sports due to the limits of their neurological condition.
Now, while its absolutely true that a week ago I wanted to stop hammering my mountain bike up the hill to take a break; but literal flashes of people unable to get on a bike due to a neuro disorder pushed me through; I realize that this perspective of “why we race” has been done. [que Lance Armstrong]. So then I decided to cover logistics:
We’re pumped to have a team in the Moab Adventure Race on Saturday March 26, 2011. 50 miles, 8 hours, multiple disciplines, a 4 person team (made up of 3 board members, 2 of them brain tumor dudes) and plans to have a hell of a time; or goal is to raise awareness and funds for Outdoor Mindset. Check out our Crowdrise Page. Training is an 8 week minimum and includes all disciplines at various distances as well as core strength work outs. Here’s a snapshot of the typical Training Plan. Sometimes we train individually, sometimes as a team; but having a specific goal in sight with an entire team relying on each other is motivation enough. For a quick video of what’s in store:
Huh...while we think it’s pretty cool, the details might not be the most engaging topic of conversation.
So in the end, I included it all; why not cover what I was thinking when writing about our upcoming Adventure Race and let you pick the story that resonates. Come on...don’t act like you’re not a fan of the Hardy Boys.
-KM
Let’s get crazy!!!
With intense winter weather pretty much all across the US in the past few weeks, it’s easy to get in winter hibernation mode. But not us at OM! Instead we’re gearing up to do some great things in March. In fact, we’re doing things that are SO great that we’re calling it March Madness and the goal is to raise $25k by March 31st. Sheer madness you may say? Nope… we know we can do it, but we need the help of other great people to reach our goal (as is true for many things in life!) so we’ve started the March Madness fundraising campaign on Crowdrise
, an online community that helps pull people together to start projects that all help reach a common goal for non-profit organizations. We need to raise $25k to get our Guide Program up and running on a new online platform that will better match Guides and Travelers, which is one of our main goals at OM – so of course we want to be
GOOOOOOD
at it!
On our
event, there are many options. First, you can donate directly to the overall campaign. Second, you can create your own project to help raise money for March Madness, and ultimately Outdoor Mindset. Third, you can join other people’s projects, and become part of their team if you like what they’re doing and want to do the same thing.
We already have some AWESOME projects up there. Tony Stafford, a friend of Outdoor Mindset and founder of Boulder Sports Performance (which helps other athletes train to reach their ultimate fitness goals) is trying to break the World Record for the fastest marathon while wearing a 40 pound pack at the Baatan Memorial Death March. MADNESS!!! A group of OM’ers and some friends are doing a Moab Adventure race that includes at 275 foot rappel off a cliff. CRAZY! Kellyn and I are going to run a 5k or 10k… ok that sounds a little more calm and reasonable, but still, we’re doing it for OM and showing that we’re getting outdoors and getting active in March and it’s all for Outdoor Mindset. If all else fails, you should at least donate the money you win from your NCAA March Madness tournament bracket to Outdoor Mindset. All you had to do was drink beer, watch TV, and make educated guesses to win that… I’m just sayin’.
So here’s to raising $25k by March 31st and loving every second of the process: from getting outdoors, harassing our friends and family to donate, and putting it all towards the goal of connecting newly diagnosed individuals with someone else uniquely familiar to the neurological experience they’re going through. I’m sure you’ll be hearing from us soon, so just go ahead and pass the word along now.
Let’s make this 2011 March Madness campaign as cool as this highlight video from the 2010 NCAA Tourney. Now help us 'WIN'! (I especially like those MSU clips...)