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

I was never totally sure I could do it. Until I did.

Whoa, get ready to smile like a proud parent over Julie's half-marathon success! I hope after reading this you're all ready to explore your limits, get outdoors, and connect with others who can help you not only during the hard times, but also share the good times. Congrats Julie!

September 17, 2012

Dear friends and family,

If the story ended with all peaches and cream that would be boring. So, between you and me, I'll tell you the real story. 

I ran my heart out; I ran 13.1 miles in my goal time of 2:00:04. 

This journey has been rewarding in every way possible. I started this adventure with a gut feeling, hope, desire, and idea and a new partner in Outdoor Mindset. I never considered running prior to this adventure. I always relied on the inside of a gym and a 45 minute work-out or in my former life a pool to stay in shape. You got a glimpse of a very personal side of my life, you started with me on this running adventure and getting outside and having an Outdoor Mindset and helping those with neurological disorders and stayed with me for 3 1/2 months until I ran a half marathon as I promised I would. I have to admit, I was never totally sure I could do it. Until I did.

I, we, raised over $7000.00 in honor of my Mom and the Remembering Robin ALS fund and have loads of people to thank for it. Family, friends, friends of friends, best friends and strangers that heard of the cause and wanted to help. So, I clearly raised awareness through the Outdoor Mindset blog and surpassed my monetary goal. Thank you all. 

Two amazing friends, Margaret Roscoe and Kourtney Matter surprised me and came to Sweden from the States the day before the big race. They are my right and left arms in life and this time they were my right and left legs. Kourtney was in the last 4 miles, I think, both my right and left legs as I was a hurting puppy and she made sure I got to that finish line at 2 hours. There is no way I would have done it without her there running. They are the best friends anyone could ask for.  

My husband has been my mental sanity and steady supporter for 3 1/2 months along with my kids when I started this adventure. I even got to hug them at the 12th Kilometer still smiling. And so many came out and cheered for me and Kourt on the race track. It wasn't until the 17th kilometer when digging deep was not a joke. And there in begins the aftermath, the reality for a first time runner going through this.

The race:

It was amazing. The weather was perfect. I mean truly perfect. I was telling someone, maybe you, that I was praying for great weather as I'm not really all that tough so I needed, wanted, hoped for the absolute perfect running conditions and got them. The race started. We took it out a little fast and felt good. Our goal was 2 hours. We were going to take it slow in the beginning to build reserves for later. But then we got cocky and wanted to catch up to the next heat in front us so we ran our hearts out. We felt fine. In fact I'd say we pretty much felt fine up until the 17th kilometer. Then we both started hurting. We started digging deep but we did stay on pace. Then I started to feel nauseaus around the same time. And a little delirious. It was waves of nausea, came and went, came and went and it didn't let up. My body was fine. Don't get me wrong, I hurt everywhere, my thighs, knees, mostly my knees actually, but it wasn't anything I couldn't get through. But my stomach. Not so much. Finally we rounded the final corner and saw that finish line. It was amazing. We crossed it, hugged and I haven't taken my medal off yet. Amazing, Kourtney was amazing - one tough runner, the buzz was amazing, the music, the crowd, the scene. I was relieved to be done. We walked to meet up with Erik, the kids and Margaret. We bypassed the massage booth and honestly I did it knowingly. I just wanted to get home.  

Dinner of Champions!

We hopped in the car and soon after getting home it came. Yup, full on dry heaving for 3 hours.  Thank goodness it was my best friends and husband who were seeing me in all my glory of dry heaving and not someone else. While Kourtney was jet lagged and just jumped in and ran and was fine - drinking Rose wine with Margaret, celebrating, having a grand ol' time. There was a party next door I was supposed to go to with all of my friends and just couldn't make it. All I wanted was to drink Champagne, celebrate with my husband and my two champion friends here from the states and party next door and I. Was. Sick. I had Marg google "nausea after running". Three things: 1) eating too much too close to the race (within 2 hours) That wasn't it. 2) dehydrated. I knew that wasn't it as I drank and drank and drank before and during the race. 3) drum roll...... Overexertion of the body. Bingo! That was it. I pushed my body past it's desired limit. I'm still a little mystified as I'm used to doing this. Back in my swimming days I did this daily. Well, I guess mama ain't 18 anymore. Well, I finally rallied later in the night and the only thing I could keep down was a bag of cheetos and a flat coke. I got to chat away with my friends and husband finally. At least I redeemed myself a little.

The lesson: I need to train my body it has to keep up with my mind and heart. Any ideas welcome. Cause I'm not backing down now. I will do this again. Save this space!

So there you have it. The full unabridged story in all it's glory. It was amazing, it was hard, I was sick and now I'm fine and I'm going to do it again.

I am blessed to have so many supporters that care about: my Mom and helping me fundraise for ALS research, Outdoor Mindset and what they aim to do now and in the future for all those living with neurological disorders and me during this journey. I am one lucky girl. Thank you from the bottom of my heart. 

I wasn't a runner so naturally I signed up for the Stockholm Half Marathon with a goal. And I'll do it again. My running, blogging, fundraising adventure has come to an end. The race is over and it's all done. I am wearing my medal and my Outdoor Mindset shirt with pride. I will no longer invade your in box or infiltrate your facebook pages with running clutter. Well, one more blog is coming out so I may peek my head in once more.

I hope you've enjoyed our journey together. I certainly have. Thanks for joining me in Remembering Robin. And you can always find me at www.outdoormindset.org. That journey for me has just begun.

Love,

Julie

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

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