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Understanding
One of the things that I admire most about Julie’s family is that they kept the door open and invited people in as they faced one of the toughest medical diagnoses there is to face. But, as in most life challenges, even with an enviably wide circle of friends, most of us will at times feel alone at some point.
It was years after her mother passed away that Julie was looking for additional support. Living overseas, with all of the busyness and joys of a young family, she realized that she needed a connection that would help her work through the complexities of grief. Through Outdoor Mindset, she has found a friend who is cheering her on as she runs and raises awareness and funding for ALS research.
Even if you already have a strong support system (which statistically speaking, most of us do not) it’s important to round it out with whatever other channels you need - professional or non. And of course in our opinion, the best environment for that support is outdoors and while being active!
Week of September 3:
Have you or someone you loved ever been affected by a neurological disorder? If you're out there, keep reading; Outdoor Mindset is here for you. They are a group of wonderful people that understand, that care about what you've been through and can even make you smile.
I remember my Mom would want to get out of the house every day and that wasn't so easy but we had the support to do it. She has tons of friends that came over every day. We kept our doors unlocked and people would just sort of show up. It kept our family sane too to have so many people help, want to help, need to help and we allowed it. We were (are) a very open family. We let people in. It worked, they wanted to come over and see us, we wanted them there.
We would get her in her wheel chair, down the elevator, out the door and into a new van set up for wheelchairs and we would take her riding. She would get out and we would all figure out a way to laugh, to eat ice cream, to have adventures, to have an Outdoor Mindset, to breath again. I remember driving after we had ice cream and there was a load full of her friends (we called them all “sisters”) that were in the back of the van all eating ice cream and she was thirsty. But she couldn't hold a cup and straw on her own anymore so this thirsty thing was not as easy as it seemed. I couldn't just hand her some water. We pulled over and her friends in the back, all goofy, funny ladies were laughing about something, telling stories, just having a grand ol time. We stopped, I gave her a drink and held it in her mouth for her while she drank and these girls were still talking away and of course making her laugh. She was now snorting the drink, whatever it was, out of her mouth, nose, ears if it could go that way. Laughing, all of us laughing. It was great. I guess what I'm trying to tell you is that perhaps if you're reading and you need support, we can help - just like my mom's friends helped her laugh during her struggling times.
My friend Jan and I are two people connected by this wonderful group and were two caregivers for loved ones with ALS. We nurtured and loved our Mom's through it. She's not only someone I've shared my story with but she is also a runner and helping me now power through my first half marathon. She is getting me mentally through some of the tough parts of this running thing that I'm brand new at. She is my supporter, an inspiration with her own ALS experiences in her family and a friend from across the world.
Personally, for several years I was reluctant to talk about it - I was exhausted from it. Now I'm ready to help those dealing with it or those who are caregivers and perhaps don't want to talk about it but would like to know that a community exists. We, OM, can provide you with support. When I was in the thick of care giving, the last thing I would've wanted to do would be to read anything about ALS. I was living it, breathing it and wanted it to end. Sort of a league of its own and well, if you're reading, we, I understand. OM understands. We can just be there for you if you are ready for us.
Thanks for reading.
Julie
Staying Centered
Tonight we have another chapter from Julie during her marathon training. This entry sheds a lot of light on the challenges and importance of being a Supporter of someone with a neurological challenge. At Outdoor Mindset, we understand this important role, which is why our Membership and programs are also for Supporters. Take is away, Julie:
Week of August 20, 2012
Last night I went out for a run after my husband got home from work. It was a beautiful night and this is the most unbelievable place to run. This little town of Djursholm. By spring and summer there are running paths by the ocean, to the golf course, around town and by winter they are cross country skiing paths.
I saw a fellow trainer wearing the I'm Running for the Stockholm Marathon shirt. I felt cool, like I was in a club and she and I for a brief second knew we were in it together as we were running on the same path deep in the wood while seeing the water peeking out from between the trees. I was running as the sun was starting its descent. I felt like the animals were watching and guiding and helping me along. Does that sound weird? I feel weird having said it, but it's the truth. Maybe Outdoor Mindset is making me more outdoorsie after all. They are, after all, the guru's in helping all those people living with neurological diseases get out there and feel life, feel the elements, feel that they are not alone. The breeze, the smells of the dirt and leaves, the little chirping and scuttling of birds and other unidentified animals were all there talking to each other guiding me and my runner friend in those woods for that one stretch of path over 5 minutes or so. I'm not so outdoorsie but I was hoping for the rain to come. That would've rounded out my experience somehow. I talk to my mom out there, in my head of course. Not out loud. I don't listen to music, I like hearing the sounds around me and then I can also think a lot more and talk to Mom. Again, weird I know, but somehow it's comforting.
If only it was as easy as the push of a button...
I remember when she was sick I would go to the gym all the time. It was the way I let out energy and kept centered throughout her illness. So, several years later, when I found Outdoor Mindset, I realized that they were in the process of creating something important; a community of people encouraging each other to use exercise to cope with the stress and the grief of caring for a friend or a loved one with a neurological disorder. I saw immediately that OM was so aligned with my belief in exercise as an important coping tool; that their programs could be valuable tools for those fighting neurological disorders as well as those working through their grief. So I decided to contact them and they matched me with a partner (across the globe, but close in life experience), encouraged me to find an outlet that was the most aligned with my needs (raising awareness and funding for ALS research) and continue to support me as I work towards my goals.
So, I run another day for you Mom, for me, for our family. I run for all those living with a neurological disorder. I'm thankful that Outdoor Mindset is out there with the hope of helping all of you affected by a neurological something.
Until next time,
Julie
Possibilities
Here he goes: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".
When you find out you have serious health issue life become simple. It becomes about survival. Life and death stuff, what movies are made about. All the silly petty crap like what "lifestyle" you have, the car you drive, it all gets gently slammed into place in the time it takes for a doctor to tell you what's wrong. But what is amazing, is what things emerge from the chaos and rise to the top of the pile as important. As essential actually. It seems like the short list is really a list of what makes life important to us individually. Usually friends and family top the list, not house and job. "You never know what you've got till you loose it," is a classic saying, but it is truly a hard lesson to learn.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
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
People who give are cool - especially Libby Boyd!
Today we have a guest blog from Libby Boyd - a friend and 'family member' of Outdoor Mindset - who recently committed to donating a portion of each sale she makes as a Realtor for Pedal to Properties to our one and only Outdoor Mindset. Some people say they're going to do something this awesome, but Libby is so committed she put it in writing, too!
"Donations" come in many forms: volunteering, hosting an event, setting a goal and fundraising through Crowdrise , or donating a little off the top of your income, etc. The possibilities are endless. Whatever you're able to do, know that it's appreciated a million times over and goes a LONG way for little non-profits like us. So
thank you, thank you, thank you
to the amazing Libby Boyd and all the other inspiring individuals who have already helped us and will help us in the future.
Here's what Libby has to say:
“If you love what you do, you don’t work a day in your life.” I completely agree with that quote since I spend my days finding the perfect home for my clients. Being the conduit that results in happy home owners is most rewarding. Getting paid to help in their purchases is “the cherry on top” for me.
This income provides for my family but once the essentials are taken care of, I wish to give back to my community. This is why I am donating a portion of each transaction towards Outdoor Mindset. I believe the organization really helps newly diagnosed people with neurological challenges through the power of nature, exercise and personal connection.
The only way to connect as many people as possible is to gain presence at events and on the internet. The organization also must have someone dedicated to overseeing the connections and ensure everyone is getting what they need. By donating a portion of my income, I will be providing funds to support this valuable service. If my financial contribution gains Outdoor Mindset entry to one more event in which they connect one individual in need of this outreach, that will be extremely rewarding.
Spending money is easy but I find few ways that are as rewarding as giving to develop a non-profit that I feel so strongly about. I would encourage everyone to see if there’s room in their personal budget to donate to Outdoor Mindset. Perhaps consider passing on a cute new pair of shoes or dining out and do something that will make you just as happy and positively affect the lives of one or many people. I am blessed that I get to do what I love every day allowing me to donate to a such a valuable cause.
- Libby Boyd
She's pretty fabulous- right? We sure do appreciate her for everything she does for OM (and not only for her donation commitment, but also for things like
whipping
up an antipasto platter in the middle of the wilderness on our Board Retreat). I don't know what we would do without active, engaged, dedicated supporters like her.
Now what are you going to do? No pressure or anything... ;)
Don't forget to enjoy the sunset,
Jill
Connecting to Connect
On Monday afternoon I was lucky enough to meet Rebekah Koenigbauer, director of marketing for First Descents. We enjoyed some patio time and shared tips on marketing for rapidly growing non-profit organizations.
First Descents is committed to curing young adults of the emotional effects of cancer and empowering them to regain control of their lives by experiencing whitewater kayaking and other challenging adventure sports in a safe, fun and supportive environment. This inspires us at Outdoor Mindset because we hope to accomplish the same - We unite and inspire people affected by neurological challenges to live big through a common passion for outdoor adventure.
Rebekah and I discussed the possibilty of having a First Descents past-participant write for our blog or serve as a mentor in our program. To us, this would be huge. In a sense, our organization is connecting to other organizations in order to connect people affected by neurological challenges with one another.
Learn more about First Descents.