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

Friends in Low Places

I’ve loved hearing about Robin’s (Julie's mother) attitude towards combating ALS.  Dealing with a neurological challenge as the diagnosed, or as a supporter, is never a welcomed challenge, but it can bring small gifts such as hope and a desire to push ourselves just a little bit harder.

Outdoor Mindset members are a tough bunch. Our group includes people with Parkinson’s who are learning to run, people with MS who will crutch for miles driven by their passion for the outdoors, people who are adjusting their love of skiing or biking by learning to use equipment that allows them to keep moving, and more. We are a group that does our best to always keep going, and encourages others to do the same. 

I can see that determination in Julie’s mom. In this next entry, as Robin rounds the kitchen island with a hero’s determination, she keeps going as best she can, in the best way she knows how- with friends, family, and laughter surrounding her.  

I can also see that determination in Julie. As she runs and writes, she opens up and develops her understanding of how her entire journey with her mother is shaping her into who she is today.

Week of August 27: 

The Baltic Sea

I'm out there running on the rim of the Baltic Sea. It's possibly the most motivating place to run. It's pretty dark and cold here in the winter so when summer comes and it's finally warm it's so freeing to be outside. It's the perfect time and place to start this running adventure of mine.

I spoke to Jan, my Outdoor Mindset running buddy. It's so nice to have support from her about what to expect on my long runs, how my body will feel and what to do about it. Today was a long one so not only did I pull from her training tips but also from her strength as a woman who has also dealt with ALS with her Mom. She's an inspiration and it just makes me want to run longer to do all I can to help.

As I run, I know my Mom is there looking down on me. That may sound weird but I do go into that sort of deep thought as to why I'm doing this while on mile six when my legs aren't loving me. She'd be the loudest screamer for me on the running path. She was my biggest fan when I was a swimmer growing up. I swam all the time; it was my passion as a kid, my sport. I wasn't the best at it but I tried to be. I still have video of my old swimming days and her in the background screaming. Kinda funny. You would think I was about to win the Olympics at how loud she could get those pipes going. But to her it was her kid about to beat another kid in a race, period. It mattered to her.

Yep - Bubble Butt!

My mom was using a walker for a long time and eventually graduated to a motorized wheel chair. Every day she would try and walk with the hope of not needing either eventually. We had this island in the middle of the kitchen and she would do “laps” around it: trying not to hold on. One day one of her friends, (we called her friends “sisters” or “circle of friends”) came over with a little bubble machine that was this funny contraption of a guy that pulled his pants down and shot bubbles out of his butt. Immature but it made us all laugh.  So, she would round the table and get back to the end where bubble butt was and laugh again at the success of her rounding the table, at bubble butt. This is a new definition of “friends in low places” thank you sisters!

So this was her exercise. Her biggest obstacle in life. Her hope. If she rounded that table without holding on somehow she thought (and therefore we all thought) perhaps this is just a funny phase in life and will pass. Perhaps it's just an ailment for this month and each day she'll round that table again and again until she's back to normal. Perhaps.

She tried each day. Each day my Dad would be grounded, positive and take it moment by moment and hope. Each day her friends showed up with a new trick up their sleeve and we laughed.  Each day they showed up with hope, ready to make her laugh, ready to listen, ready to hug away her tears and fear.

So I continue to run.  It makes me realize that I'm not sure I could live sanely without some sort of exercise in my life. It keeps me whole and centered. And wanting to help others fighting a neurological disease, get outside and benefit from that feeling.  And I'm feeling good. I think it's due to my overpriced fancy new running shoes. But they are cool. Stay tuned.....

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

Trying to Find the Silver Lining

So I'm not going to lie - when I sat down to put together tonight's blog (which is the second entry from Julie, our OM Member in Sweden who is training for a half marathon while matched up with another OM Member in CO also training for a race) I had a hard time seeing the silver lining in the reality of Julie's latest post. After reading and re-reading her powerful words, I came to the realization that the 'positive, smiley face, encouraging' silver lining of her story (which I always try to find) is that she's doing something about the horrible disease of ALS by raising awareness. And while she supported her mother in her years of ALS, she also did all she could, by finding hope. 

The other thing going through my mind as I write this tonight is the importance of Outdoor Mindset in connecting people affected by neurological challenges like ALS - to connect people affected by these tough experiences so that they can gain even more hope, solace, and understanding in what they are going through, or what they have gone through, or what they are about to go through. And while the advice may not always be easy or sugar-coated, there is a power in numbers and in connections for both awareness and for hope. 

You can donate to Julie's project here. 

Is that a silver lining I see on that cloud?

Here's Julie's second post on her half-marathon training: 

I'm out there running and the first thing I do is swallow a team of bugs... then I trip. Honestly. And this was going to be my first big run outside. An hour long run. What a way to start. The woosie in me wanted to forget it this time, turn around and drink a glass of wine outside on our new picnic table with my husband who just sat down to a lovely meal. The motivated me with my Mom's voice said, "don't be a woosie". So, continue I did.

Must. Raise. Awareness.

Can you imagine walking into a Doctor's office not knowing what is wrong with your legs and why they don't seem to be working exactly right? Knowing that something is just a little bit off and then walking out knowing you are on a downhill slide with no cure? No, I can't either. That's why I'm dedicated to raising awareness in order to help find a cure for ALS and put an end to this awful neurological disease.  

Mom was diagnosed with ALS early on but we didn't believe it. At all. We kept hope alive. My Mom and Dad saw multiple other doctors and finally found one that did have hope, which was rare. Looking back now it's clear to me that there seems to be two schools of thought when it comes to doctors and ALS. 

School of thought #1: This Dr will just diagnose it as they see it, it's matter of fact for them. They are Doctors and their purpose is to tell you what is ailing you. I guess there's nothing wrong with that. I'm sure there are ethical reasons behind a lot of it and sometimes those mega braniac Doctors just don't know how else to go about it. They just tell you the facts, tell you as it is, done. 

School of thought #2: This is the Doctor who is, as I like to call them, 'Humane Doctors', at least when it comes to ALS. They see the disease from a mile away but it doesn't benefit the patient if they know what it is and how their body will eventually start to go down a downward spiral - especially if it's early on. So this type of Doctor rules everything else out. They keep searching and testing for different treatment paths for the patient to take. They give you hope. 

So we found a nice, wicked smart, humane Doctor that likely knew it was ALS but did try and rule it out anyway. He was cutting edge, he knew his stuff, he had access to info, he was willing to spend time with us and just chat. He gave us hope and that we desperately needed and wanted. And when it's ALS you've got to want someone to convince you it's not. 

He's an MS specialist, but it's all in the head, right? Thank you Dr. Sadiq, for your hope, care and compassion.

We all knew deep down what it was. We finally resorted to admitting it and then the process began of letting that info sink in. Mom, you were superhuman. I remember she looked me in the eye as she was taking her electric wheelchair into the elevator and I was going towards the stairs and said, "Are you going to be ok with this?" My response was with as sturdy and strong a response as it could be and an utter lie so she didn't have to worry, "Yes". She entered the elevator and after the doors closed, I broke down in tears until I met her at the bottom of the elevator with a smile again. She was amazing. I put myself in her position now, at least I try mentally. I will forever learn from and admire her strength in all situations and especially her last test, ALS.

Thank you for reading again.

Julie

Going the distance....together.

13.1 miles is a long way to run. I've never tried to do it and am not sure I ever will (please don't challenge me). But with summer in full swing, it turns out that our OM Members are in full swing, as well, and are tackling some huge outdoor adventures together - like running marathons. Some people may think that a personal match made between two people on different sides of the world may be a bit hectic and unorthodox. However, we think when you have something in common as personal and important as being a supporter and caretaker of someone with ALS, it closes the distance and makes it feel like the other person is right there for every step of the next journey together - even if that is training and running a marathon. That's what Julie (in Sweden) and Jan (in Colorado) think, as well. But I'll let Julie fill you in on the rest and give you a bit more background... and stay tuned because there's more to come soon! ~Jill

Here's the full download from Julie: 

I am not a runner. I didn't even like to run.  So naturally I've signed up for the Stockholm Half Marathon on September 15, 2012. This is my story.

My mother died of ALS in Oct 2005. I was very involved in her life battling ALS, in general, but specifically while she was in her last few years combating the disease with strength and hope. Ever since then I've wanted to do something to help raise awareness and money towards a cure for ALS. First I needed to heal and step away from my personal experience for awhile. I needed to let my mind and body live life again - happily without worry, pain or fear of how my mom is doing that day and what I might face looking into her eyes but still needing to smile and laugh with super human strength. I come from a family rooted with love, good values and a foundation stronger than most. A family that has faced challenges, adversity and euphoric times; who's core has been shook but is strengthened by facing challenges head on and believing in positive energy, living a life that makes a difference. We believe it's how you live life that really matters.

So I fell in love, got married, moved to a few countries, worked, had a few kids and breathed fresh air again. I am proud of my two children and family, in love with my husband and love where life has brought me today - the journey and all. I am 37 years old and from New Jersey but now living in Djursholm, Sweden (a little town outside of Stockholm). As I was emersed on Facebook, I saw a friend's post about this wonderful organization called

Outdoor Mindset

. It's an organization who's mantra is: to unite and inspire people affected by neurological challenges through a common passion for the outdoors. It screamed my name and therein began the end of my search of figuring out how to raise awareness for ALS. I emmersed myself in the website and immediately signed up and reached out.

The road ahead... running!

Being that OM's mantra is uniting people affected by neurological challenges; they immediately connected me to another woman, Jan, who lost her Mom to ALS. Together Jan and I will be running in separate races across the globe from each other - she resides in Colorado, I in Sweden- to help raise awareness and funding together towards a cure for ALS. Please join us on

this blog

to follow our journey and get to know us on our mission to make a difference and find a cure for ALS. We will also be raising funds for the ALS Association on their website,

here

.

Now the best part is going to be following us on our path as we run in our separate races across the world while trying to raise money and awareness for ALS. We will share our emotions as caregivers and daughters of people with ALS. We hope to reach others affected by ALS or any neurological challenge on our blog. Oh, and there will likely a few belly aches and pains as we train and keep it real.

I'm not exactly a natural runner but I figured if my mom can endure a 5 year plus battle with ALS with superhuman strength, head on and with relentless hope then, well, I can run a half marathon. I hope. I thank goodness I have Jan, a natural and professional at my side helping me as she trains for her two races in August and October.

At least the view is nice in Sweden!

So I'm running. I'm running to support my fellow OM member Jan who's in CO running for the same reasons I am - our buddy support system.  I'm running for all of you living with ALS, for all of you with a loved one living with ALS, for all of you that have lost the battle to ALS, for all of you that know what ALS is and want to give it the big finger and for all of you that want to take the stairs but have to take the elevator because of ALS. I'm running for you, Dad, who would've gone to the poorhouse (and I think almost did) figuring out how to fight this disease for her with all of the homeopathic, holistic and cutting edge non-insured covered drugs and procedures with the hope of saving your love and soul mate. I'm running this for you Mom - my inspiration on how to fight and live large until the end.

Follow us along as we train. And if you're now intrigued, check out the

full Outdoor Mindset site

to understand all that this wonderful organization does to help people affected by a neurological challenge and why getting outdoors in any shape or form can heal. There are many ways to be involved. Perhaps you may want to join too?

~Julie

Team Outdoor Mindset Goes to Moab

So...this is how I was going to start:

Outdoor Mindset will have a presence as “Team OM” in the Adventure XStream Moab Adventure Race. J

ust as we’ll be navigating our way through the race using nothing but a compass, map and a trust in our designated navigation point person; Outdoor Mindset’s Guide Program has great hopes to inspire our Guides to leverage their own experience in facing a neurological challenge to help navigate OM Travelers through a new diagnosis.

But then I decided that while it’s a good one, I rely on metaphors WAY too much when writing blogs, so forget that idea. Next, I thought about writing this:

While I’ve participated in a few races in the past, for me, the Moab Adventure Race that Team Outdoor Mindset will be competing in will be the most difficult challenge to date, by far. Over 50 miles of kayaking, mountain biking, trekking, rappelling and navigating takes another level and different style of training than I’m used to. However, as will be true during the race; when I’m on my last few miles of any given training day, what pulls me through is thinking of the many people we hope to serve through our Guide Program that find it difficult (or impossible) to enjoy these sports due to the limits of their neurological condition.

Now, while its absolutely true that a week ago I wanted to stop hammering my mountain bike up the hill to take a break; but literal flashes of people unable to get on a bike due to a neuro disorder pushed me through; I realize that this perspective of “why we race” has been done. [que Lance Armstrong]. So then I decided to cover logistics:

We’re pumped to have a team in the Moab Adventure Race on Saturday March 26, 2011. 50 miles, 8 hours, multiple disciplines, a 4 person team (made up of 3 board members, 2 of them brain tumor dudes) and plans to have a hell of a time; or goal is to raise awareness and funds for Outdoor Mindset. Check out our Crowdrise Page. Training is an 8 week minimum and includes all disciplines at various distances as well as core strength work outs. Here’s a snapshot of the typical Training Plan. Sometimes we train individually, sometimes as a team; but having a specific goal in sight with an entire team relying on each other is motivation enough. For a quick video of what’s in store:

Huh...while we think it’s pretty cool, the details might not be the most engaging topic of conversation.

So in the end, I included it all; why not cover what I was thinking when writing about our upcoming Adventure Race and let you pick the story that resonates. Come on...don’t act like you’re not a fan of the Hardy Boys.

We'll be tracking our progress, snapping photos and filming video the whole way. So, stay tuned-in to this blog, Facebook and Twitter to follow along. It's going to be a blast and it's the first of many events that we'll be participating in this summer.

-KM