OM STORIES
Moving Forward
Kevin says "I think the most important thing that I can share with folks about traumatic brain injuries is that your brain never stops healing. You can heal as much as you want as long as you keep your mind to it and work hard. I think it's really hard for a lot of kids because they think they're in such bad shape that they just give up, and that's been the most important lesson for me: It's hard and it takes a lot of work but you can heal."
Then there's professional snowboarder Danny Toumarkine, who just over a year ago suffered a traumatic brain injury while riding in Montana. A brief bio, according to him, reads: "On January 3rd I suffered a traumatic brain injury; 4 brain surgeries, medically induced coma and paralyzed. 5 weeks later I was released from the hospital and in recovery mode. Now its non-stop physical therapy and physical activities whether it be hiking, golfing, fishing, rock climbing etc."
Check out this trailer about a film about his brave and intense recovery journey:
Moving Forward - Trailer from Shreddy Times on Vimeo.
You can walk the full film here.
One theme that weaves between these two stories is the spirit of determination and positivity these guys have retained while facing their neurological challenges. While staying positive and working hard towards their end goal of doing what they love in the outdoors again, Kevin and Danny have both dominated their recoveries and become great role models for those facing traumatic brain injuries.
So let's all learn from them, knowing this is what Sarah Burke would've done, as well:
Stay positive! Get outdoors! And continue to Live Big!
Happy Monday -
Jill
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
Outdoor Mindset Chili Cook-off 2011 - YUM
Determination
Here's an inspiring guest blog from one of our amazing Outdoor Mindset Members - Jonathan Houle - about living an extraordinary life!
Hope everyone had a great Thanksgiving holiday!
And in case anyone is worried, don't fret folks- the winning Chili Cook-off recipe will be revealed soon on this blog. ;)
Enjoy!
Determination
I was 5 years old when my mom told me I was adopted. I thought in that moment that I was different and unique and I was determined at all costs to prove that from that moment on.
She was diagnosed with Cancer in The early 1990’s… I was playing with my toys in the family
room when she collapsed onto the floor. The ambulance showed up. There was obviously something wrong. The next thing I can remember is seeing my mom at Stanford Hospital. I approached her on her Hospital bed as the late afternoon sun shone through her window on to her blue fuzzy hospital comforter. She was weak, and she did not have any hair on her eyebrows. She had some kind of bandage wrapped around her head from where they cut into her temple to take out the tumor. She looked at me lovingly. I was scared and quiet.
She lived like a rock, tempered by the ebb and flow of my dad and my grandiose notions and crazy projects, though virtually unwavering in her views. I remember how she would not budge from her opinions and stood by them even if a different way seemed blatantly obvious to everyone else. We thought she was crazy.
Looking back, I can now see that we were the crazy ones. She simply stood for what she believed in, IN THE FACE OF ANYTHING, including cancer…
I was able to settle this with her the year before she passed. On a Friday morning, I called her and I apologized for being a jerk, and not listening to her. I told her that I loved her and that she was the only mom for me. She told me she loved me and that I was the only son that she could ever have.
To honor her, I will live nothing less than an extraordinary life…
Throughout the second half of her diagnosis I began to give myself over to the practice of Aikido. I wanted to escape as far away from what I considered to be a normal way of life. This is also why I moved to Bulgaria to be an apprentice in the discipline.
When we train in Aikido we push ourselves beyond the limits of our minds and what we think is physically possible for our bodies to accomplish. Bulgarian Aikido is a manifestation of my commitment to my Mom’s life and her perseverance in the face of physically crippling circumstances.
The doctors gave her 10 years. She lived 20 more years after that.
This is why I became a member of Outdoor Mindset…
I met Kyle at a networking event and we instantly connected given who he is and all of the good things that the organization is up to. I immediately saw an opportunity to contribute my experiences and to help people dealing with their own neurological disorders. I became a member of Outdoor Mindset to inspire others and to be a part of something greater than myself.
Jonathan Houle is the owner of Bulgarian Aikidoin Boulder, CO and has been training in Martial Arts for 10 years. He is a Black Belt and Sensei. He has a B.A. in Psychology from Eastern Washington University and has been married for three years. Bulgarian Aikido offers discounts to Outdoor Mindset members. He can be reached at jonathan@bulgarianaikido.com.
Ann Nicocelli Part II: What I have learned...and wish I had known before brain surgery
(So instead you should just go to OutdoorMindset.org right from the start and sign up to be a traveler and connect with someone who has experience with a similar diagnosis or neurological experience!)