OM STORIES
Still in the Game
Greetings Outdoor Mindset friends - I hope you all had a fabulous weekend!
Everyone always needs a bit of inspiration on Mondays, and I have just the story for you. Today we have a guest blog from Outdoor Mindset Member
Don, who is an avid lover of the outdoors and the sport of hunting. Don also has debilitating Multiple Sclerosis. Don's attitude, similar to that of Outdoor Mindset's, is that nothing is going to stop him from doing what he loves, and he's broken down many barriers and hurdles to make that happen. I love the title Don has given his blog - Still in the Game - because that's exactly what he is... still in the game, and a major player at that! Don't ever forget that you are ALL (neuro challenge or not!)
always
still in the game, and take strides to make sure you are a major player, just like Don.
Still in the Game
It's been several years since I've put together my story so when I was asked by my new friends at Outdoor Mindset to write something up for their blog, it took more serious thought than I expected. I do my best pondering in the woods so I'll head out to a little strip of high ground between our food plot and a pond. That's where I'll begin my tale.
As I absorbed the peace that is so often my companion when I'm in the outdoors, my thoughts turned to the road I've traveled to get to this point in my life. A person never knows which way the path will lead. We encounter many forks along the way, some of which lead to good stuff, some bad. Either way we live, learn, and move forward. Sometimes the path is smooth but often it's just plain rough and feels uphill all the way.
Finding out you have a serious illness makes a pretty nasty bump in the road. Living with the progression of that illness is rough. When we are faced with something like that, a person has two choices. We can either give up and crawl under a rock or we can play the hand we are dealt. I choose to play.
My struggle with a physical disability started in 1996 when I was diagnosed with multiple sclerosis. My world was shaken. Suddenly my future was uncertain. I was 31 years old with a growing family and a solid career path teaching and counseling that I truly enjoyed. Thinking back, there really was no choice. It simply needed to be faced and that was that. My wife Leann and I waged a silent battle against the disease for some reason not wanting to burden any family or friends unless we absolutely needed to. That time came all too soon and by 2004, I could no longer function well enough in my job and needed to go on disability. My mind was fine but I was down to one usable leg and one arm. Combine that with dizziness and fatigue and I wasn't doing my students much good anymore.
Going on disability felt like giving in but there were no other options. Thankfully I had some time to prepare things so I could still be in the woods and not trapped in the house! Still… I needed some serious soul-searching to find a new direction. I began to help Steve, a buddy of mine who worked for Babe Winkelman Productions. Babe helped me get started with voice-recognition software and I communicated with folks calling in looking for information about hunting and fishing opportunities around the world. I
would put them in touch with outfitters who could offer the services they were looking for. Interesting work and I met lots of great people but I knew it wasn't the direction I was meant for.
I was visiting with Steve and he made an interesting suggestion. He said that since I was already researching ways to stay in the woods or on the water maybe I should use my computer knowledge and find a way to share that information with others. I asked him to tell me more and he suggested I build a website to share some of my information. He said "you can't do things the way you used to but what you do is a far cry from sitting on the couch watching hunting shows and wishing"
At that time, information about the outdoors for someone with a disability was all but impossible to find. My wife and I sat down together and figured out how to put the information I had gathered for myself in a format that others could use. It wasn't long before we had a small working website named
with some basic tips and tricks I had found to be useful. One thing led to another and the site grew almost faster than I could keep up. I'd research things and talk with outfitters during the day and my wife would get home from work and we would add them to the site. Soon it was all I could do to keep up with the calls and e-mails but I was loving it. I had a direction and was doing some good!
Meanwhile, MS was taking its toll on my body. I kept losing ground and wasn't far from being bedridden when the drug Tysabri became available. It was risky because the main side effect was death but the alternative was spending the rest of my life in bed. I couldn't do that as long as there was any option at all. I took the chance and never looked back. So far so good and it's been about six years as I write this story.
As always, there are good days and bad days. I always used to tell people that I would hunt as long as I can pull the trigger. When that day came and my hand could no longer squeeze hard enough, it hit me hard. I came back to the house feeling about as sorry for myself as was possible. Imagine how pleased I was when I got my first sip and puff trigger and could do it with my mouth! It's been five seasons now in which I harvested my deer without lifting my hands from my armrests.
That gives you an idea where I'm at. I am a quadriplegic so things are different than they were when I was able bodied but I've become so much more than I ever was before. I can’t walk but I can and do have a positive impact on so many people. I firmly believe the quote "that which does not kill us only serves to make us stronger". What happened to me could happen to anybody. Whether it be an accident, illness, or other catastrophe, the issue is not what happens to us but what we do with it. If you are new to the game, come on in, and we'll make the most of life together!
Don
Chapter 2
I blinked and somehow more than ten years have passed since I wrote that blog for Outdoor Mindset.
My original intention was to add a few paragraphs to bring the story up to date. However, there have been so many changes and so much water under the bridge that I cannot bring myself to modify the honest feelings I wrote in that story. I will have to simply sit down and write chapter 2 to bring my readers up to date. While I truly appreciate your attention and your patience when I become long-winded, I will do my best to keep this as brief as I am able. I can certainly understand the difficulties faced by directors when they try to portray a good book during an acceptable runtime for a movie.
Overlooking the Chagress River in Panama
Tysabri kept my MS under control for another year and a half after the end of chapter 1. My worst fears were realized when the side effect of death suddenly became imminent. With only a year to live, I was forced to expand my search for a cure beyond our borders. My family, my friends, and the whole hunting community came together to send us on a trip to Panama for a life-changing stem cell transplant. That brought into my life an unforgettable year of miraculous improvements to my abilities. Among the changes were things like motion returning to my right arm that had not moved in seventeen years, improvements in vision, thinking, and the list goes on and on but that’s another story. Suffice it to say that the changes were awesome in a disease that allows for no improvement.
Shooting from my standing frame
As the positive changes happened, there were several changes in my family dynamics and I found myself divorced and living on my own dependent upon a team of caregivers working hard to keep me in my home. Just a few years after the successful procedure, I once again got very sick. My kids traveled home to stay by my side during the terrible life-and-death struggle with Guillain-Barre. For weeks, I lay in a hospital bed without vision and struggling to communicate through lips that were paralyzed. Thankfully that storm finally passed and I began to focus once again on my struggles with MS. We traveled once again to Panama for another stem cell transplant with the hope it would counter the effects of the Guillain-Barré. My second treatment brought a new set of exciting changes to my life. My body’s ability to control its own temperature returned to normal and my strength and mental clarity improved dramatically.
Fishing boats in Panama are not very accessible
Throughout the roller coaster ride that has become my life, I learned to do my best to keep up the good fight and to enjoy the blessings that come along as part of every day. My little girl is all grown up now but she travels home from Washington to spend every deer season with her dad. That gives me some of the finest moments life has to offer throughout the year. I still shoot with my faithful mouth control for both crossbow and gun. I have found it is more than just possible for a quadriplegic to consistently harvest nice whitetails, turkeys, pheasants, and even to catch some pretty great fish. I manage my own team of caregivers and lead a happy and fulfilling life still trying to leave world a little better then I found it.
My daughter and I in the deer stand
I am most defiantly still in the game. If you are as well, give me a shout. I love to hear and maybe share your story. If disability is affecting your ability to enjoy the outdoors, give me a shout. I’d love to help.
My first Tom from a wheelchair
Is that just the dose of inspiration you needed on a Monday? Now get out there, get involved, and get cranking on something awesome.
Jill
Hold on to your seats!
SPRING MADNESS!!
What season do you think is most productive for new ideas, adventures, and stepping out of the box? Is it Fall/Winter when leaves start to turn red/brown and then it gets to be -30* outside? Or is it Spring when flowers start to bloom, the grass turns from brown to green, and the sun is constantly shining outside? I’ll let you take a guess which season I’m leaning towards for my final answer. At Outdoor Mindset, we have a history of Living Big in the Spring. Way back when, when Outdoor Mindset first got started, a great majority of the Board took a trip to New Zealand in April of 2010. For two weeks we explored the South island, and backpacked, beach-camped and bungee jumped through that amazing country. You can check out our full adventure here. And while that seems like so long ago, and just like yesterday all at the same time, the Spring tradition continued last year, when we launched our first ‘March Madness’ fundraising campaign to help raise funds for our Guide/Traveler Program. This included activities including 5ks, huge Adventure Races, and even mustache growing to help spread to OM spirit.
So now here we are, Spring 2012, and how are we going to top ourselves this Sping? Well, there is LOTS going on at Outdoor Mindset, and that’s an understatement. We have two Board Members traveling the world for a year (and skyping in for Board Meetings from beautiful places like Thailand! Checkout their blog here) two Board Members about to take a 4 month adventure to Costa Rica, two moving out to Bozeman, MT (and taking OM with them!), two with new babies this year, Med school domination on the East Coast, and much much more. PLUS, we just hired our first part-time staff member (Welcome Patti!) to help expand and develop our membership programs, which is huge for us! AND, like that’s not enough, we just launched our new fundraising campaign, appropriately titled ‘Spring Madness’ to get people outside, trying new things, and join in on the fun that Outdoor Mindset likes to explore during the Spring Season, while raising funds for our Meet-Up Groups.
Check out our Crowdrise Page to see all the amazing things we’re doing for this Spring Madness campaign, and get involved in a project, or just flat out donate! Like I said, our focus for this campaign is to raise funds for our biggest 2012 initiative - Outdoor Meetup Groups within our membership program- to strengthen connections and inspire members to get outside. What a better way to build a connected Outdoor Mindset membership than to get outside together? Since many expenses go along with managing this program; such as the technology platform to manage events, labor costs associated with managing the program, outreach materials, food & beverage costs, rental expenses, etc., we’ve set at $10k goal for Spring Madness and need your help to reach that numbers. So come get involved, join in on the fun and start your own pattern of Living Big in the Spring… we wouldn’t have it any other way!
And just in case I wasn’t clear –
to join in on our Crowdrise Spring Madness event, donate, or for no other reason, just to see how cool we are. :)
Hope you're all having a great week - and Happy Spring!
Jill
Possibilities
Tonight was a full moon night. Cold, semi clear, and brightly illuminated. As a celestial event, I am often amazed by how many people fail to recognize this regular events passing. After all, it has an effect upon all of us that is often unrecognized, and in profound ways. Growing cycles in agriculture which dictate for many growers when to plant and when to harvest. Tidal movements in the ocean which dictate when to leave a safe harbor, or when to enter one. A full moon always seems to be the highlight of the lunar cycle. Taking a moment to enjoy the sight is always worth it.
Tonight's full moon was especially opportunistic. It seems like I used to take more advantage of the light nights to get outside more. To go for a snowshoe, have a bonfire on the beach, and just enjoy the event on a regular basis. When my friends decided to cancel and stay inside tonight instead of go for a snowshoe, I almost plopped in front of the tv for dinner and a movie. Why I didn't though is at the essence of all this full moon talk.
I got some great news today. It was news I hoped for. But it was news that confirmed my fears could be laid aside for a while longer. My doctor called today and said that my brain tumor looks to be shrinking. It is supposed to be dead, but retains its presence for some odd reason. That it is shrinking, is indeed great news. Suddenly, the world was again full of new possibilities. Suddenly the air smelled sweeter. Howling at the moon was suddenly an excellent idea.
Possibilities. That is what this is about. Socrates in all his ancient wisdom decided that if one were to search for truth, all you had to do was to think critically, remove all the "wrong" ideas, and ultimately you would be left with the "truth". The problem with that though, is that to think critically all the time, you end up losing sight of the experience. You get stuck in a negative rut analyzing what is wrong, and not seeing what is right. You never get outside and enjoy the full moon because it is cold, you have a brain tumor, you are tired, your afraid of everything not "right".
Some of the greatest people I know have lost nearly everything. But you wouldn't know it. They live life at a pace that is staggering to watch. They have been knocked down, and get back up rejuvenated to enjoy, appreciate, and share what they have, with a smile on their face. It seems like neurological disorders give you a choice. You can give up, or you can get up.
Outdoor Mindset is comprised of a group of people who appreciate what they've got. Some almost lost it before they realized it. Some have learned to appreciate what they have by watching others. Either way, the emphasis in OM is about the possibilities. There are a million ways to appreciate whatever good health we have. It might be cycling across a continent solo. Or it might be going for a full moon walk with friends. Either way, the level of appreciation is the same. It is about taking each and every second, and making it count. Why go out and enjoy the full moon? Because you can.
Jesse Horton
President and Chief Mischief Officer, Walt Horton Studios
Hope everyone is having a fabulous day!
Jill
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