OM STORIES
Heidi joins OM & the Denver Meetup Group
Heidi is a new Outdoor Mindset member, who recently joined the Denver meetup group. We're super excited that Heidi is part of the OM Community and appreciate her sharing this blog post:
Heidi is a new Outdoor Mindset member, who recently joined the Denver meetup group. We're super excited that Heidi is part of the OM Community and appreciate her sharing this blog post:
I don’t even know where to begin – this I know for sure: I know I am a typical Colorado native. I love the great outdoors; skiing, camping, hiking, you name it…………………. .oh, and of course The Broncos!
I was an educator. I love learning and had taught children for 17 years. I love people, cultures, and travel. I traveled to Croatia, Germany, and Switzerland, studied in Italy, taught in Mexico and explored the US too. Backpacking the Grand Canyon was incredible. My 5 yr. old niece and I are going to “The Big Hole” when she’s 12. I possess the independent spirit that accompanies all of this.
Well, I suppose I don’t know where to begin because I also know that I am beginning a new life.
Although the desire that beats the heart of all of these “known’s”, these “loves”, essentially the pieces of my identity, still exists, my ability to live them altered. I must fulfill my identity differently because who I am is not going away and nor are the challenges that brought on by epilepsy. How do I marry these two? That is what carving this new life is all about.
I began having seizures four years ago. The seizures increased in severity and occurrence over these years until I was only safe under supervision or just within the walls of my small condo. Often my bits of solitude merely came on the heels of persistent insistence. My independent spirit was wearing on me and my dear loving and supportive family. However, it usually produced our only refuge. I had taken every medicine, suffered extreme side effects, and withstood countless tests and hospital stays.
My family had been stretched immeasurably. I was completely dependent, a bus ride let alone a drive were out of the question. It had been four years of an incomprehensible whirlwind. My mind could not begin to process the changes my life was going through at even half the pace with which they were happening.
This complete redefinition of life, health, and future led me to a decision that, as difficult as some may find, was rather obvious to me. Three months ago I decided to have brain surgery. I couldn’t be more grateful; language is inadequate to express this. The world has supported in ways I didn’t know were possible…friends, family, doctors, acquaintances, and beyond.
I have now experienced three months without a seizure and have even begun to dip my toe back into the outside world. I have gotten out on my own, ridden the bus, taken walks, and even met friends for lunch. Okay, I won’t be hitting the back bowls or even jumping on a bike. What do they say about, “Running before you can walk.” ?
I am taking it very easy and so glad that through my struggles I have met Lisa Avram, a leader in the Outdoor Mindset Denver Group. I met Lisa, and a really moving group of people who also struggle with epilepsy, through an art therapy group. Our continued gatherings regularly provide me with a unique strength. Through their support and my experiences I have learned the importance of listening to my limits vs. what our culture expects of us. I am enjoying things I never believed I would. A bus ride is quite an adventure, a joy all its own and one to celebrate! Sure, not the south rim nor Yellowstone but a gift nonetheless.
As I get out again at the pace that my health dictates, I am grateful for the resource of Outdoor Mindset. Yoga is wonderful, I look forward to walks around Cheesman and eventually there is hope for much more. What I appreciate is the spectrum of challenges I can choose from through OM.
I believe I have found a tool to help me marry who I am and the challenges in this new life.
I look forward to it all and am so grateful - bus rides to mountaintops!
- Heidi
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
Hold on to your seats!
Moving Forward
Kevin says "I think the most important thing that I can share with folks about traumatic brain injuries is that your brain never stops healing. You can heal as much as you want as long as you keep your mind to it and work hard. I think it's really hard for a lot of kids because they think they're in such bad shape that they just give up, and that's been the most important lesson for me: It's hard and it takes a lot of work but you can heal."
Then there's professional snowboarder Danny Toumarkine, who just over a year ago suffered a traumatic brain injury while riding in Montana. A brief bio, according to him, reads: "On January 3rd I suffered a traumatic brain injury; 4 brain surgeries, medically induced coma and paralyzed. 5 weeks later I was released from the hospital and in recovery mode. Now its non-stop physical therapy and physical activities whether it be hiking, golfing, fishing, rock climbing etc."
Check out this trailer about a film about his brave and intense recovery journey:
Moving Forward - Trailer from Shreddy Times on Vimeo.
You can walk the full film here.
One theme that weaves between these two stories is the spirit of determination and positivity these guys have retained while facing their neurological challenges. While staying positive and working hard towards their end goal of doing what they love in the outdoors again, Kevin and Danny have both dominated their recoveries and become great role models for those facing traumatic brain injuries.
So let's all learn from them, knowing this is what Sarah Burke would've done, as well:
Stay positive! Get outdoors! And continue to Live Big!
Happy Monday -
Jill
Take a Moment to Feel Alive and Thankful this Holiday Season
HAPPY HOLIDAYS TO ALL OF OUR OUTDOOR MINDSET FRIENDS AND FAMILY!
This year, don't let the craziness of the holidays overtake your life. With family coming into town, gifts to find, things to do, houses to clean, and meals to be made, let's all not forget to cherish the little moments during the holidays that should be the primary meaning of this season:
to give thanks and spend time with those you love, doing the things you love, which hopefully also includes some R&R in the outdoors, as well.
To help put this in perspective, we have a guest blog from one of our fabulous Outdoor Mindset Guides, Natalie. In her story you'll read below, you'll find that amidst recovery from brain surgery (and you think the holidays are stressful!), Natalie found herself in the middle of a lake in her kayak giving thanks for every second out on the water, feeling alive and thankful for her neurological experience and the new path her life was on. Take this inspiring and amazing story with you this holiday season and give thanks for the many blessings you have in your life, and take on a new appreciation for the little moments we should all be thankful for.
Here she goes:
The "New Normal for Natalie"
My journey with neurological challenge began in April of 2005 with what the radiologist report said, "accidental find" - a brain tumor in my right anterior temporal lobe, about the size of a golf ball. It was a Friday morning. I was so confused about the information they handed me on the paper that I went home and began to google all the types of tumors and the impacts to the areas of the brain that may be affected by my type of tumor. What I found was pretty upsetting and I didn't have anyone to talk to about it. I didn't want to scare my family and yet, I needed emotional support. Hearing "brain tumor" is a pretty scary thing and the thoughts of "Okay, now what the hell do I do?" are the ones that come first, finding all the information you can and then of course determining the approach with your doctors is the process that isn't so easy to have patience to endure. I wanted answers quickly and found that in some cases, they simply don't have answers to provide. Plus, everyone and every situation is different. I was thankful cancer was ruled out and still, I had a tumor that caused "mass effect" in my head.
My approach was to rule out some of the serious side affects that "may" happen if we waited and watched my tumor for a while. My wonderful team of doctors (really love them) admitted that they really didn't know much about my type of tumor and given, that it represented less than 1% of all intercranial masses, they were very rare. I truly appreciated their direct, honest feedback and the amount of time they spent with me to understand what I was facing.
With MRI's planned every six months (unless new symptoms appeared) - we "watched" my tumor. We watched it slowly grow. I knew it was growing given the increase in pain I had been experiencing from the intercranial pressure, it's similar to the symptoms of meningitis. I could deal with those and often wondered what a "regular" headache would feel like. My pain tolerance began to increase and dealing with the pain became routine. All this while working full time in a management executive role - and being a single mom to 2 wonderful boys.
We watched it... In the mean time - I continued to do the things I loved outdoors; fly fishing, kayaking, hiking, water/snow skiing, boating, Occasionally, I would be debilitated with the pain and be in bed for a day or two but I was able to get back into the swing of things quickly. I rarely missed a day of work and learned to push through the pain or "nut up" as my sons would say. ;-)
In the fall of 2008 I started to feel different. The painful "headaches" were getting more frequent, lasted longer and I became WAY more sensitive to light and noise. I also noticed my sleep was far more interrupted.
On December 19th, 2008 I experienced my first partial complex seizure. Everything changed on that day. I was alone, had just come down the stairs of my home when out of blue, with no warning my head/neck were rigid and my chin was close to my left shoulder, my left arm was rigid and I couldn't move it. I felt my way to the bathroom with my right hand, sat down and waited. The seizure lasted about 60 seconds but seemed much longer. I was confused - I didn't know what to do. In my post seizure funk, I drove to work.
It wasn't until I was at work for a while that I realized what I had just been through. So, I went back home and called my doctors. I was immediately put on Kepra and a few other drugs. The MRI revealed my tumor had grown to about the size of an egg and surgery was scheduled. I asked for the surgery to be in March of 2009 so that I had time to get my "house" in order. The list of risks from the surgery was long. After you read "death" - all the other ones seem like pretty good outcomes.
The seizure clinic revealed I was having partial complex seizures through the night as well. No wonder I couldn't sleep. And, that the cause of the bigger seizure was the growth of the tumor.
My surgeons did an amazing job with the craniotomy. Prior to the surgery they said there was a 50% chance my tumor would come back. After the surgery, they felt it was less than that and had hope I wouldn't need surgical intervention in the future. But again, we're "watching" it.
I had many challenges to face before, during and after the surgery. The most important message I think I can share is to learn to accept there will be a "New Normal" for you when you're faced with a neurological challenge. Folks would ask me if I was 100% - back to normal. I think it took me a while to realize that through such adversity and challenge I could not help but be changed as a person. After my recovery, I was more grateful for everything from the smallest thing like birds visiting my bird feeders to being able to hold my sons. I looked at everything differently. My New Normal was a gift.
This picture of me in my "cloud" kayak was taken about 9 weeks after my surgery. It was the first outdoor experience I'd been able to have after my surgery. It was a turning point for me in my recovery. I had many weeks of confusion, fear, worry and stress. Because my tumor was pushing on my emotion center - with so much pressure that it actually also thinned the skull wall - I felt confused a lot and I suffered short term memory loss. I would often wonder "Am I feeling the right thing, did I say the right thing, was I empathic, did I even know how to be empathetic any more....... etc." But I couldn't find the words to share that with anyone. I would express that frustration in other ways towards those that I loved. Like complaining that there were no pictures of my recovery. What that really meant was - I need some evidence of what happened, I have no memory of it. But again, I couldn't find the words to say that...
Being on the lake that ONE day in my kayak and my belly boat fishing was the first time after my surgery where I didn't worry. I didn't feel like a victim of a brain tumor. I was ALIVE. I savored the warmth of the sun on my face, I prayed to God and gave my thanks for getting me through my challenge, I dropped my hand in the water and appreciated that my hands worked, I cried at the beauty of the calm mountain lake water and each fish I caught (and released) I would kiss them and thank them for biting my fly. I didn't worry about how to tie my flies or how to cast - it came naturally to me and I was grateful for every single second...
That trip fly fishing was by far the biggest catalyst in my healing. After that trip, my short term memory challenges began to subside. I had renewed hope and strength to fight. I was able to get off most of the meds by June and went back to work. I traveled internationally to Sweden in mid June and kayaked there as well.
Being outdoors, in nature - especially around water and then doing the things that I used to love prior to my surgery helped me realize that I am settling into my "New Normal" and it's pretty damn cool to come out the other side of all this as a survivor.
I was introduced to Kyle, from Outdoor Mindset, by my surgeon - we have the same team of doctors. I am honored to be part of the Outdoor Mindset team and cannot express enough gratefulness for a group like this existing. Being a Guide also helps me by being able to "give back" or "pay it forward" - by sharing my experience. After all is said and done - when you connect with another person facing a neurological challenge, no matter where they are in the process - you GET IT. There are no words that can be expressed to share what that connection is like - it's deep, powerful and a feeling of relief comes over you that you don't have to try and explain what is going on in your head. It's SO helpful to have someone to talk to - someone who has been there. I hope I can be that "someone" for many folks and I would feel blessed to be next to you in your journey.
~Outdoor Mindset Guide, Natalie
I don't think any other words are needed.
Live BIG this Holiday Season and thank you for everything you do,
Jill
Ann Nicocelli Part II: What I have learned...and wish I had known before brain surgery
(So instead you should just go to OutdoorMindset.org right from the start and sign up to be a traveler and connect with someone who has experience with a similar diagnosis or neurological experience!)