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 

Understanding

When I read this next blog from Julie, I was reminded of how important it is to have a varied support system for the person who is going through the neurological challenge, as well as for those who are providing support.  By varied I mean a wide circle that can help tackle the complexity of feelings, provide entertainment and distraction and even encourage strength and growth through the changes that a neurological disorder can bring.

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