Meet-Up Spotlight: Ohio's Maggie

Meet Maggie, our Ohio Meet-Up group leader. Her connection to Outdoor Mindset runs deep and we're fortunate to have her as part of the OM family. Here she tells her story about her neurological history that has an amazing outcome... because it brought her to our organization!

"I remember one day when I was probably a junior or senior in high school. I came home from school in severe pain and instead of going straight to bed or taking a hot bath, my anger got the better of me and I decided to go for a run. I was so sick and tired of the constant pain and the feeling that I couldn't really be myself. I was fed up and pissed off. So I put on my running shoes and ran.

I don't remember running, but I do remember stumbling into the house about twenty minutes later, doubled over, pressing the palms of my hands into my forehead as hard as I could to keep myself from vomiting. I could hardly see; everything was too bright and blurry. I couldn't talk, because my own voice triggered a chain reaction, starting with the nerves behind my right eye and radiating down my spine. I couldn't eat, because the nausea made it impossible to swallow. At that point, there was nothing I could do but crawl in bed and wait it out. The next day would be the same, but about 15 hours of sleep might give me the energy it would take to make it through school the next day.

It's strange to look back over the last 10-15 years and realize how much has changed. In the days before I found an effective treatment, it was hard to even imagine spending more than a day without pain or nausea. Now, my bad days are few and far between, and I feel like I finally have the ability to be myself and do the things I want to do.

I was finally diagnosed with migraine after my family doctor put the pieces of my genetic puzzle together: my dad had mostly recovered, but had suffered from severe migraine when he was younger, and while my symptoms presented differently, they all pointed to migraine. At the time, I didn't really understand what that meant. I later learned that migraine is actually a brain disease that affects the entire central nervous system, and it explained the severe stomach pain and nausea I'd experienced when I was younger, as well as the cognitive impairment and other symptoms. Several years later, when I was in college in Kentucky, I was also diagnosed with seasonal affective disorder (SAD), which could have a connection to migraine and contributed to the severe fatigue.

During the two years I was in Kentucky, I struggled with pain, nausea, fatigue and sometimes even cognitive impairment, making it difficult to have a normal social life and succeed in school. Medications I had tried before just made me sick, and I didn't know if I would ever find a treatment that would help me be "normal," whatever that meant for me. At the time, I just wanted to be free from the pain. But I didn't realize how many areas of my life were affected until I got better.

When I transferred to go to school back home, I spent the summer working with my doctor to find a treatment. Around the time school started, I was beginning to adjust to the medication that would change my life. I was starting at a new school, with a new major and hoping and praying that this time things would be different. I didn't really like high school, so I had always looked forward to college: the chance to start over, study things I actually cared about and get the real "college experience." Kentucky had been a bust, but going into my junior year armed with a medication that actually worked, I knew things could be different.

And things were very different. I was no longer afraid to be around people, worried of what they would think when I couldn't keep up with the conversation or it took me an unusually long time to respond to a question. I could go to events and meet new people, because I was there to have fun, not to merely survive until I could get back into bed. I could run for fun; I could go to parties; I could even speak up in class discussions, because I was able to follow them. That's when I realized how much I had been missing out on. It wasn't just the physical pain and limitations that had made things so difficult, I had also lost my personality, my passion and my ability to make connections with other people. I literally didn't know who I was. It was almost like meeting myself for the first time; I learned that I was actually an extrovert and loved meeting new people. I found a passion for fitness, running, biking and other outdoor activities. I joined a sorority and found out that event planning and fundraising was another passion of mine. I learned photography and picked it up as a minor, because why not? I took advantage of every opportunity I could, and I wasn't afraid to try new things.

When I ran across the Outdoor Mindset website, I had no idea there was already an organization that combined some of the things I care about most. I am now a trainer for Planet Fitness and I'd eventually like to specialize in working with clients who have neurological challenges and mental illnesses. I feel like I can relate to some of the challenges that those with neurological diseases face, and I know from experience how exercise can change lives.

I also know how important it is to be surrounded by people who care and support each other, especially when you're facing a chronic illness or disability. I was lucky to have my family and a few close friends by my side while I struggled with my illness, and I don't know what I would've done without them. That's why I'm so excited to be a part of Outdoor Mindset and grow a community in Ohio. Through outdoor activity and social connections, we CAN make a difference in the lives of those with neurological challenges!"

Super Woman Sally

Sally is an old friend and colleague of many of us at Outdoor Mindset. A few years ago, she scared us all senseless when she was in a serious backcountry skiing accident in Jackson, WY. We, along with her 8 billion other friends and admirers, have had the pleasure of rallying around her and watching her come-back from this accident. She is a true inspiration and rock star, and it's an honor to have her be a part of the Outdoor Mindset family.

Raised in Colorado, I started skiing at age three. (But I went in my dad’s backpack in the backcountry at six months old!) My family has a cabin in Leadville, so when I was young, I skied at Ski Cooper. Once my brother and I “graduated” from Ski Cooper, at about age 12, I went over to Copper Mountain. I skied there for most of my younger years, and at age 15, I started the Junior Ski Patrol program. While I was in college, and for a few years after, I was a volunteer patroller, with skills as an EMT.

After college, I worked many ski-related jobs in Boulder, including being the online editor for SKI Magazine. I worked there for a couple years, considering it my “dream job.” I skied in places like Canada, New Zealand and Chile, and trips like these were fully paid for- but I was laid off from that job. That was a Wednesday, and by Friday, I had another offer on the table.

I accepted that job, and within two week, I packed everything I needed in my car, and headed to Jackson, Wyoming. I absolutely loved it there: the PR company I got a job with, Denny, ink., had major ski industry clients like Arc’teryx, Dynafit and Nordica, so I went skiing for part of the day and it was considered “work.”

Skiing with three of my Jackson friends one Saturday, we rode the tram up at Jackson Hole Mountain Resort, and hiked to where we wanted to ski. We were going to ski “Once is Enough,” but we had to ski another, narrower run to get there. When we got to the top of our run, we clicked in, and my friend went first. He gave me two thumbs up, telling me it was safe to go. I started downhill, took a few turns, and then my ski fell off. I crashed, and slid downhill for 550 feet. I came to a stop by bashing my head on a rock. I was unconscious, but everything else was fine. My one friend who went first hiked up to me, and my other two friends skied down.

Once I got off the slope (which took a really long time), I was airlifted to a hospital in Idaho Falls, where I was placed in an induced coma. Even though I was only in Jackson for a short time, a lot of friends I had came to visit me. I stayed there for three weeks, and then was okay to fly back home, to Colorado.

I had multiple injuries—a broken back, neck, and ankle, and I had to have back surgery to fix that break. I wore a neck collar for a long time in the hospital so that my neck would heal. And I still have foot problems from the break. I wasn’t eating at that time, so I have a belly scar from where they put in the feeding tube. I lost a ton of weight- 30 pounds- so they gave me a smoothie with stuff that made me gain weight.  I remember when I first got to eat by myself, and I forgot how great that was.

A few months after I lived at home, I got to go back to Jackson and thank all the people I knew there. Since the PR company I worked for had some clients in the ski industry, a lot of ski stuff was donated, which gave people another reason to come.

There were a lot of things I had to go through to recover- physical, occupational, and speech therapy. And even though I was 25 (and I turned 26), I lived at home. Living in Colorado Springs wasn’t great, because most of my friends were in Denver or Boulder. But I needed that time to still recover- I wasn’t able to live on my own.

Now that I live in Boulder in a condo that my parents helped me buy, I’m in a much better spot- I can see friends more often, and since I don’t drive, I can take the bus everywhere. Getting back to the life I used to have will never happen, so I struggle with loneliness. My friends from before my accident are finding new jobs, getting promoted, and/or having kids, but I feel like I’m stuck in the same place. I used to have a great job, and was doing really well at it, so this injury has stopped that. I just have to find a new way to gain happiness, beyond my job. I haven’t gotten there yet, but I’m still working on it.

I am so glad that I have come this far, when I was so very close to death during my accident. But the way my friends acted during my accident saved my life, and luckily, worse things didn’t happen with the bones I broke. My life will never be the same as it used to be, but I’m lucky to be alive so I can adapt to the changes.

Post accident, there are a lot of things that are important to me now, that I never used to consider important. Balance is one of them- I still have trouble walking. I don’t ski like I used to, and that was so important to me that even my job revolved around that. Riding bikes is a problem- I never realized how balance plays into that. My parents have kept their tandem, though, so I can still get my biking “fix.”

Yes, things aren’t how they used to be, but I’m learning new ways to do them and find other things that make me happy. I’ve now realized that the sports I used to do were the main source of my happiness. Now that I can’t do them the same way, I’m trying to learn other things that make me happy.

Outdoor Mindset has really shown me that there are more people who struggle with the same things I do, so it’s good to know that I’m not alone. It’s the simple things like having coffee with another Outdoor Mindset member that matter the most. I find pleasure in the simple things now, because I’ve realized how important they are. Before my accident, I thought bigger things were more important—like traveling, being a bridesmaid in someone’s wedding, or having success at work. Now, it’s the little things that matter the most to me, and Outdoor Mindset helps with that.

Starting the Year Off Right

Happy 2013 OM'ers!

Well, in keeping with the spirit of the New Year, I must start things off on the right foot by being truthful in admitting defeat in the 2012 Outdoor Mindset Chili Cook-off that was at the end of October 2012. Yes... it's true... Kyle's Two-Step Texas Chili took first place this year, bringing in lots of votes (aka Texas money brought up to CO by the Martins!) As promised, here is the winning chili recipe. I could've re-typed it, but I thought the pictures and comments in the original recipe print-out were too good not to share! (Don't forget to add more beef!!!)

The 3rd Annual Chili Cook-off was a great success, raising over $8,000 for our programs and members. I huge thank you goes out to everyone who attended, donated, or participated in our silent auction which had some amazing items this year. The chili was good, the beer was good, and the auction was great, but the people who come are always the best part!

That same weekend, amidst the chili cooking and preparations, we even held a mini Board Retreat, where the OM Board of Directors did some planning for 2013. To say the least, we are extremely excited for the upcoming year and the future of Outdoor Mindset. We have some great ideas for enhancements to our programs to further serve our Members and get everyone outdoors. So stay tuned! 

2012 was a great year for Outdoor Mindset, as well, with just under 200 Members who are affected by a neurological challenge and have a passion for the outdoors.  Our Meet-Up Groups launched this year, with great momentum in both Boulder, CO and Hanover, NH. We've also made some amazing 1:1 connections through our Guide Program, where Members provide great support and inspiration through their relationships. Our Members continue to amaze us with their stories and spirit!

We have so much to be thankful for this past year, and moving forward for 2013 but we can not say it enough: Thank you so much for your support and for tuning in for updates! Now get outside. :)

Back to resolutions, football, and winter fun,

Jill 

Three Squeezes

Julie's race has come and gone, but she has one last inspiring and touching story to tell - and it's amazing, as always! On behalf of Outdoor Mindset, I want to thank Julie for sharing her story with us and helping to spread to good OM word. It's stories and attitudes like this that really make us who we are as an organization. That being said, if anyone else out wants to share their story with us, please contact me at jill@outdoormindset.org. Thanks again Julie - and keep running! 

October 2012:

It was 7 years ago this month that my Mom, Robin, passed away from ALS - Lou Gehrig's Disease. Yes, my race is over, the fat lady sang and it was loud and clear. But (one last but) I hope you can allow me to invade your inbox one last time and reflect a little. Personally, I gained a tremendous amount from the half marathon race, the Outdoor Mindset experience, the entire adventure. It allowed me to shout from the roof tops that when you have a support network and stick together you can make a difference in the quality of someone's life and give them hope and a smile. I supported others and was supported by others both during my Mom's fight and during this run. That's what it's all about. ALS is not a pretty sight and it never will be. We had other plans but then ALS reared it's ugly head and our family had no choice but to deal with it. The choice we did have was to support each other, deal with it together, dig deep and be real. It wasn't pretty but without that support it would have been unbearable. This race and my connection with Outdoor Mindset allowed me to sum that up, honor my Mom and put a dent in the funding needs for ALS research with the hopes of finding a cure so collectively we are one step closer to ridding humanity of the unbearable that is ALS. 

Julie and her 3-Squeezing Mom, Robin

Ever since I was a little girl with long flowing blond curls in pigtales, I remember my mom usually hold my hand if we were out and about and would periodically squeeze it three times. This meant: I. Love. You. This was our family thing. When she tucked me in at night just before I fell asleep she would squeeze my hand three times ever so slightly so not to wake me but so I knew just before dreamland that she loved me. If I was sick at home with some flu bug she would do the same. I think I would've died a thousand deaths if my Mom started telling me in the back to school section of the shoe store that she loved me just because she thought I was cute trying on new saddle shoes. It was our simple way of letting each other know we loved each other when it was likely inappropriate to speak it. So, three squeezes did the trick. I just sort of thought everyone did this until I got older and realized this was a Morhouse thing. My older sister and I would do it to each other if she took me to the mall shopping when I was a kid and we were together hanging as sisters. She was 10 years older and cool during those years when my mom was no longer cool in my eyes. You know those girl teen years. I would do this with my younger brother although he would always giggle. We still do this today. I carry it on with my kids. When my husband does it to me, it no doubt makes me teary, every time. It's her living on through us, in my kids whom she never got to meet, in my family. 3 squeezes - unconditional support and love.

As she declined her voice was affected until it was quite hard to understand what she was trying to communicate. For some reason I had this gift, this ability to look into her eyes and just know what she needed after she mumbled a few illegible words. I don't know why but I had this ability to understand her for the most part. It got harder as the months went on but usually we'd get there. It was a gift and it was all we had. Everyone had their role. This was mine. Sometimes she needed dad, sometimes she had to pee, sometimes she just wanted some gooey melted chocolate to suck on.

When Mom was on her last month of life she was under heavy doses of painkillers. She could only use her eyes to communicate in the form of blinking. None of the other muscles in her entire body worked, just those eyelids. We were lying in bed one morning waiting for her doctor to come to the house and adjust her painkillers. It was a beautiful morning, the sun was streaming in the windows that were just above her bed, the clouds parting, a slight breeze. We were just existing together, heads touching and holding hands waiting. Then she gave me three squeezes. They were ever so slight and a magical gift. It was all we had. I gave her three squeezes back and then the doctor came. Sometimes words aren't needed – thankfully.

What I've learned in life is that there are hard times, there are wonderful times, there is life. We plan and plan and inevitably life takes over and creates a new situation we haven't planned for. Those plans are not always welcome but we have no choice but to deal with it. The choice we do have is how to handle this new deck of cards we were just dealt. Turning that negative into something else, perhaps hope and creating positive energy feels good, almost addicting. This is not necessarily easy. This mindset is what lead me to Outdoor Mindset. Their one and only goal is to help and give support to those living with a neurological challenge. Living with any disorder is not what we plan for in life. When “life” happens, adapting to a new personal situation or a new support role for a friend or family member with a neurological disorder is not what we plan for. What we do have is a choice and ability to be strong and reach out for help or provide help, to provide support, to create laughter and love, to be there. Can you imagine living with a neurological disorder and not having that support? Outdoor Mindset does exactly this. They want to be your friend, but only if you're affected by a neurological challenge – that's a pretty great friend. They are that someone that's there to lift you up, help you get outside and feel the elements in whatever way you are ready for them; planting flowers, going for a walk, hiking or biking with the equipment that allows you to get outside, or a talk in an outdoor coffee shop, they will be there to support you, three squeezes.

Maybe I can't give Mom three squeezes now but I can 1) help combat this illness, 2)help others living with other neurological disorders live the best life they can and 3) honor my Mom while dedicating my time to Outdoor Mindset.

So, I continue running and helping.

Thanks for reading my blog series. Thanks for being on this journey with me. Thanks for your care and support while Remembering Robin. Thank you. 

Humbly,
Julie

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 afarcry.info 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


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

Possibilities

If there's one thing we just love love LOVE (yep, 3x the love!) about our Outdoor Mindset Members, it's their 'Game On!" spirit that really inspires us the most. The desire and openness to do anything, be anything, and accomplish anything, despite any neurological hurdles that may stand in their way, really drives our organization to provide programs and services to these awesome people. One great example of this is Outdoor Mindset Member Jesse Horton, who wrote today's guest blog. Even the sky isn't the limit for Jesse... and by reading this you'll understand why he is who he is, brain tumor and all.

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

Ann Nicocelli Part II: What I have learned...and wish I had known before brain surgery

Today we have part deux of Ann Nicocelli's amazing story and blog. She has twenty points and tips about what she has learned and wished she had known before having brain surgery just over a year ago for a brain aneurysm. She says above all, the most important guidance she has to give is to stay positive and maintain a sense of humor through it all. Plus I've added some shameless Outdoor Mindset plugs along the way in green that tie into her words of wisdom. :)

Here she goes:

1. Your body can only take care of you at the level and quality that you take care of it. The phrase “your body is your temple” gains new meaning. If you take care of yourself, your mind and body will give back to you x100…and you will need it.

2. Everyone taking care of you – from the people in the hospital, your doctors, your family and friends – is human. Although you are the focus, they also have and need their own support networks and friends. It is important to be respectful and appreciative.

3. There is such a thing as too much information at most stages of this process. We live in a world of information frenzy. There are pros and cons to our access as you gather information for a medical procedure. In advance of my surgery, when I went online and looked for similar stories about what to expect, they were hard to find…but there were plenty of scary anecdotes that were not relevant to my situation that were emotionally exhausting to process.
(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!)

4. It is ok to protect yourself mentally as you go through the diagnosis, surgery and healing stages. You need your mental strength. It is important to stay strong and keep positive people around you.

5. There is no perfect way to prepare yourself, your family or your friends for your brain surgery. Everyone is different. Do what feels right and is personalized to you. Make sure you have the legal and financial components covered…and from there, it is creative sailing.

6. If your family is involved in the process with you, they may change and your relationship with them may change. This is an intense process and you are not the only one who will be affected. Relationships became much more open, honest and deep. This isnt necessarily a bad thing, but it isn’t always easy at every step. (Have your friends and family sign up to be a part of Outdoor Mindset as well, as a Supporter!)

7. If you have children, they will likely be resilient, but not impervious to what is happening around them. They will take cues from you. Make sure that there is a plan that directly responds to their needs at every stage – before, during, and after surgery. There should to be someone other than just yourself that is sensitive to your children at all stages. The outcome to you surgery is unpredictable, so there should be a plan that can adapt to a variety of foreseeable scenarios. It is important to set this up in advance.

8. Your quality of healthcare and surgical care matters…a lot. Get as creative as you can to get the best surgeons and doctors to help you navigate your journey. Additionally, although your comfort with the lead surgeon is critical, the comprehensive quality of the whole team and all the services of the hospital is very important as well.

9. The way you try to fix your aneurysm the first go around is critical. This is your brain – once a surgeon enters your brain, it will affect your options moving forward – so choosing wisely the first time matters.

10. The surgeons and doctors you talk to will generally give you a solution based on what they know how to do. If they are a specialist in clipping…they will most likely give you a clipping solution. If they coil…they will likely tell you coiling is the best. Remember, medicine is a business. Try to find doctors who can truly give you an assessment of all the options available.

11. Coming out of this you may not be the same or look at life in the same way. This is a daunting statement as it can mean many things. Know that it does not necessarily have to be bad…it can actually be a wonderful thing. Events like this, if internalized, can make you realize what a blessing life is, how to appreciate the small things, and that all those challenges that used to interrupt you from enjoying life, aren’t that significant.

12. If you are single...your social life won't end after brain surgery. I am not sure if it is because you come out more relaxed or if there is some curiosity out there about people who have gone through brain surgery…but there are still plenty of people out there who seem to not really care that you have a scar in your head. It's actually kind of cute. I love my scar, I am proud of it. :-)

13. Most of the healing process is very personal and internal to you. Others are heavily involved, but most of the fight to recover is within yourself.

14. There are many likely scenarios where you can come out of surgery and this process stronger than you went in. Stay strong, remain hopeful, and continue to dream BIG.

15. Lessons Learned about Going Back to Work: Take it slow…if you don’t, your body will make you – there is a reality of how hard you can push yourself, and the limit you had previously is diminished. It will come back, it just takes time.

16. Time has a new horizon. Healing and evolving past brain surgery is not about taking days or weeks, it is about taking months and years. The days matter a lot, but how I handle the months matters too. You may have higher expectations of yourself than others do around you. It is ok to take it slow, don’t be hard on yourself. Give yourself time.

17. No matter what you feel about your life, you will likely feel like you need to go through an entire life assessment…because what happened during surgery was just “that” big. You may end up staying in exactly what you are doing…or you may completely change…it is less about the change than the need to assess and make sure that what you are doing is worthwhile in your own mind.

18. My own personal experience was that I needed to go back to the same job just to prove to myself that I could do it. It became a way to compare and judge if I was any different on any skill. If I would have done something different right away, I would have never truly known or had a way to assess nuanced capabilities.

19. When you are digging deep in racing or training, you will pull from places of strength that were discovered in the brain surgery process. This is a wonderful feeling and makes the process poetic.

20. ...And at one year - I still have the post surgery euphoria. Life is an amazing thing and there is really not much I am afraid of at this point. You learn to deal with phenomenal adversity and see the strength of human character from the front row....or maybe even the stage. (Like Outdoor Mindset always like to say - KEEP LIVING BIG!)

- Ann Nicocelli

Amazing words of wisdom and insight for all of us, especially those going through a challenging neurological journey.

Thanks so much Ann!

jill

A Journey Worth Traveling - Ann Nicocelli

Today we have a guest blog from Ann Nicocelli, an Outdoor Mindset Member in Washington DC who does not believe in limits. Ann was diagnosed with a brain aneurysm and had brain surgery just over a year ago. She is a dedicated athlete, mother, and lover of the outdoors and she has not let her diagnosis define or limit her throughout her journey. She has worked back to amazing strengths after surgery (back at 200% she says!) and continues to compete in triathlons. She is an inspiration to us all.

In Retrospect: One Year After Brain Surgery...

A Journey Worth Traveling

My one year anniversary since brain surgery was two days ago - on September 10, 2011. Trying to wrap my arms around everything that has happened over the last year is a bit surreal. It has been quite a journey. In a way, I feel like it has been a lifetime. I will begin with where I am today, but I must share that the road to getting here has been full of twists, turns, bumps, and near misses.

Nothing was lost and much has been gained through brain surgery...really. I feel extremely fortunate to be here with all of my mental and physical function back at 100% and I actually feel like I am at 200% compared to how I felt prior to surgery. This is due to unending support from family and friends, tremendous medical skill and effectiveness, being physically and mentally fit, a deep passion for the outdoors and a significant amount of luck that the stars aligned to bring it all together.

The mission of Outdoor Mindset resonates deeply with me. My connection and love for the outdoors brought me through my most challenging elements of brain surgery. When I was looking for hope prior to surgery, it was hard to find. Outdoor Mindset brings this all together in one place. It is an organization where you can find information, hope, and friends who have traveled a similar path with common inspiration from the outdoors.

Here is my story...

July 16, 2010: My daughter sat in the corner on a stool in a private room in the emergency area of the hospital. She was occupying herself in a very mature way for a 5 year old, while I went for tests and spoke to the doctors and nurses. After what felt like hours (ok…it was hours), the ER doctor came back in and said that the severe vertigo that I had been experiencing was likely due to stones in my inner ear being out of place.

I didn’t know what this meant. I just wanted to understand what would make the intense nausea and dizziness go away. He then offered that the results of the CT of my head had come back and the blood flow from my neck to my head was normal. This information gave me a split second of relief when he paused, looked me in the eye and added, “the CT also showed that an aneurysm was found in your brain.”

My foggy, pained, nauseous head thought, “What?? an aneurysm? What is that? I am a healthy athlete; it can’t be that big a deal. This is about vertigo and getting rid of it as quickly a possible.”

I heard the doctor. He explained what it all meant in technical terms and then softly said that I didn’t need emergency surgery but that I should set an appointment with a neurosurgeon as soon as possible. He went on to say that it was small…4 millimeters…on the left side…and again he observed that I did not need emergency surgery. I think this last reflection was supposed to provide relief.

I look back on that day and the weeks that followed and a flood of thoughts, emotions and memories come to mind. One thought that is very clear is that I know that being an athlete and my connection to the outdoors has made me stronger, kept me centered, and continues to play a pivotal role in successfully taking me through tremendous adversity. It has truly saved my life.

Surgery:

The more I learned about aneurysms, the more I realized how serious and life threatening this condition was. In preparing for surgery you need to plan for results as varied as death, permanent brain damage, or what is hoped, coming out of surgery stronger than when you entered.

After researching the best neurosurgical facilities, I ended up going with Johns Hopkins Hospital in Baltimore. Ironically my lead surgeon, Dr. Alexander Coon, was also a triathlete. His strength as a surgeon combined with his training as a triathlete and connection to the outdoors became important to my success. Dr. Coon dealt with the severity of my condition while also understanding the approach that an athlete might take going into surgery and coming through it.

I had signed up for the Luray and Nations triathlons prior to surgery. They were supposed to be my first races. I had been a cyclist but decided to jump into tri training to see how it felt. I was ready to go but I ended up storing all my gear and canceling my participation in both tri's. In order to avoid the aneurysm rupturing, I couldn’t do anything that would increase blood pressure in my head prior to surgery. Even though I canceled (or in my mind postponed) the races, I kept training at a scaled down level up until the day before surgery. I swam, biked or ran regularly. Because my surgeon was also an athlete, I was able to manage this under his watchful eye. The training was essential. It kept me balanced, focused, and strong.

I approached surgery almost as if it were race day. I knew it would be hard, that there was an element of unknown, and that I had to be stronger than I ever had been in my life to get through it in a positive way. The surgery ended up being more challenging than expected. I almost lost the ability to speak, understand language, and control the right side of my body. This path was fortunately averted. Instead, I came out of surgery with all of the brain function that I went in with, along with euphoria and an acute awareness that comes from a near death experience. It turns out that the original vertigo, which put me into the hospital, was unrelated to the aneurysm. Additionally, the wall of the aneurysm was so thin that it would have likely ruptured very soon without surgical intervention. I am blessed that the aneurysm was found and forever thankful to my surgical team for bringing me through it so successfully.

Building Back Better:

The memories after surgery of relearning to walk up stairs with a physical therapist are very recent. I made the decision to focus on endurance training because it not only made me happy, I felt like it was the best way to put the fatigue and post surgical healing behind me. It is important to know that after surgery, your brain can heal. Surgery is a traumatic process. There is an evolution that you and your brain will go through of reconnecting. It is actually a beautiful thing to experience. The healing power of the brain is inexplicable in words.

Although I worked out right up to the day before surgery, I suffered a significant loss of strength and endurance through this process. This is typical. My upper body strength disappeared. Under doctor’s orders, I was not allowed to lift anything heavier than a milk carton for 3 months. I went from being able to comfortably perform full push-ups before surgery to not even being able to do one push-up on my knees after surgery. In addition, after the surgery my ability was depleted to the point of not being able to swim 10 meters in a pool or run half a block without being winded. (This is rather traumatic to a self described triathlete!)

I have had a lot of "first's" since surgery...the first time I walked again, the first time I ran, the first time I put a bike helmet back on my head (ouch!), my first triathlon, and so much more. In retrospect, I have learned a lot and healed in a way that has been better than I could have imagined...admittedly fighting every day to build back stronger. I have kept a journal which tracks my daily developments. It also tracks the fun, comical stories like when I went into the bike store a week after I arrived home from the hospital - yes, the true sign of a diehard gear geek! I still had 28 staples in my head and thought it might be the only place I could go and not be stared at...and maybe even be cool if they thought the staples were from a bike jump. I also decided at that point that I could have had the best costume and should have scheduled surgery closer to Halloween. I digress...

Severe fatigue post surgery is common. For me multisport training was a way to look straight in the face of it all and say “that is not going to be me.” Twelve days after the operation, I went for my first run and have been training ever since. I ran a 10k thirteen weeks after surgery in just less than an hour. Completing the race was a triumph. I used this run to qualify for the National Half Marathon in Washington, DC. My first triathlon was Columbia International Tri (1.5k Swim – 41k Bike – 10k Run) on May 22. I raced this with my surgeons Drs. Coon and Geoffrey Colby, also known as A1 and G6 when they are ripping up the roads. I also raced the Luray International Tri, the same distance, on August 13. This was a huge victory as this was a race I had cancelled a year ago to prep for surgery. Yesterday morning (September 11) I raced the Nations Tri in Washington, DC. The swim was cancelled due to flooding, but it was still a great bike and run! It felt awesome to join the two races that I had cancelled last year. In a way it became closure on a year of building back. I can now think big in a new way and define my race schedule based on what will be fun and where I want to take multisport training moving forward.

Healing is an arduous process. There are challenging days and easier ones. You realize there are times in your life when you need to ask a lot of your body. It is so clear to me now that your body can only respond at the level that you take care of it. I am now having fun indulging myself, pushing the athlete in me forward, and seeing what my body and mind can do. I feel stronger, more focused and self realized than when I went into surgery and it is invigorating. Training for me used to be just a way to stay healthy. It has now become an integral part of my life.

CycleLife invited me to join their tri team. The team environment provides tremendous support and our team is a fabulous group of athletes. I spend more time now focused on my nutrition and recovery in between workouts. It has made all the difference in my overall quality of life. I am looking forward to adding cycling and running races to the calendar to supplement the tri's. This will all be coordinated with Steve Dolge, my ever supportive coach.

Life After Brain Surgery:

It would be cliche to say that my life has gone back to normal. There really is no such thing. I am back to being a dedicated mom, to working in the international corporate world, to enjoying time with family and friends, and to living an active, athletic lifestyle. I have been medication free since a week after surgery and I enjoy a life with a sweetness, beauty and calm that comes from facing your own mortality in such an intimate way. There are daily challenges that life brings that now seem easier to put into perspective.

I am proud of being a brain aneurysm survivor, thankful for my wonderful medical team, family and friends, and excited for the future that has been given to me. That precious box that holds the meaning of life has been opened, and I will treasure it every moment.

My connection to the outdoors and endurance training has made me heal faster, stronger, and in a more well rounded way than I could have ever imagined. If you have brain surgery on the horizon, from my heart, I wish you all the very best. A friend who is a cancer survivor told me that this process would make me a warrior. It will do the same for you. You are stronger than you realize, make sure you smile and even laugh a little - or even a lot, and know that many others are with you.

- Ann Nicocelli

WOW - talk about an amazing story!

Stay tuned because later this week we'll be posting 20 things Ann has learned from surgery, and what she wishes she had know before surgery.

Happy Monday!

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.