Carlyn’s 2015 Boston Marathon Speech: A Journey with MS & Running

I raised over $7500 for MS

I raised over $7500 for MS

A month ago I ran the 119th Boston Marathon with Marathon Strides Against MS Boston Marathon Team. Not only was I honored to make my dream come true along side 53 team members who raised money for the same cause, but I was asked to be the only team member to speak at our pre race pasta dinner. Living in Denver, CO, my only connection with everyone until this point was our Team Facebook Group. Being able to introduce myself while sharing my passion and purpose for the pursuit of these particular 26.2…. with everyone all at once, was the icing on the cake.




SO…I thought to share my speech with all of you, too. Here goes:

“I can’t believe this weekend is finally here. If you’re anything like me, you booked your flight in December and told the Customer Service lady that it was taking you to run the Boston Marathon. I’ve pretty much told anyone that would listen to me since the day I found I was on the team. You see, I have Boston Roots. I was born in Framingham 37 years ago. My Dad raised me to be a die-hard Pats & Red Sox Fan. My Mom raised me to be a die-hard Lobster & Clam Chowda fan. My Grandma didn’t call me Carlyn, she called me CAH-LYN. Boston is in my Blood and I love being in this city! This is one of the reasons I stalked David for weeks before he officially told me I was accepted to run with all of you. Being here, and especially being asked to speak tonight, truly is a dream come true. I’m honored to share my story of WHY this particular marathon, for this particular cause was a must on my To Do list in life.

Can anyone remember when running 6 miles scared the hell out of you? I can. It was my training run for my first half marathon, 5 years ago. Standing before you now, I can honestly say that I don’t just like to run, I love it. However, running the Boston Marathon never crossed my mind until the tragic events of April 15, 2013. A voice from within spoke to me and I knew I had to run–for Boston. I also knew there was no way on earth I could qualify. It just so happens that I met Phil Yastrow, a former runner with this team, who told me he got in by running for MS. What? You mean I can fundraise for my cause AND run the Boston Marathon? This had my name written all over it.

The decisions I’ve made over the years led me to this moment. I believe every day we have the choice to look at life from a positive or negative perspective. We have the power to allow tragedy to create purpose and take action rather than waiting for life to happen. I know I am here with all of you because I have chosen to walk (or in our case, run) a life paved by optimism and opportunity.

To start, it was October 1997. I couldn’t feel the water hitting my arm in the shower. Then my entire left side fell asleep. Within a day my torso was numb, followed by the loss of vision in my right eye. I was an invincible 19-year old sophomore at Indiana University until I was given my diagnosis of Multiple Sclerosis. MS, what the heck was MS? Thankfully, I was told to look up the National MS Society. I read that MS was different for everyone, that the symptoms varied and there were treatment options. Yes, I was scared. But I was comforted by the love and support from all my friends and family. However, any scared thoughts soon vanished when 2 of my best friends died 10 months apart in separate car accidents. The first was one month after my diagnosis. I share this as part of my story because accepting their deaths was much harder than accepting my MS. Rather than feel that life was unfair, I felt fortunate to be alive. I wanted to experience all that I could for myself and their spirits, too. Shortly after their passing I had my first of many AH HA moments and declared a Mantra I still say today: I will plant my feet all over this planet as long as I can.

Me with my Mom & her Boyfriend after I gave my speech.

Me with my Mom & her Boyfriend after I gave my speech.

After graduation, I moved to Dallas, TX. I was 23 when I happened upon a Lunch & Learn presented to my company by the Director of the local MS 150, now called Bike MS. I walked up to the Director and said, I have MS. It was the first time I’d shared it with anyone that understood what that meant. Though I didn’t own a bike and I was anything but a runner, I decided to step out of my comfort zone and join a local friends & family team. The Society asked if I would appear on the local news to promote the bike ride. My Dad flew out to crew, my friends made signs to cheer me on and I met other people like me. Most people I met with it were much older than me yet often I had an earlier diagnosis! So I made up the joke that I’d had MS longer than I’d been legally able to drink. I’d never been an adult without it. But jokes aside, I liked this new sharing role. I liked fundraising and I liked making a difference. I loved this experience so much I did it again the following year.

Fast Forward to 2004. I followed my dream of living on the beach and moved myself to San Diego, CA. Soon after, I called the Society to get involved. Upon hearing my name, they immediately asked if I was related to the Chapter President, Allan Shaw. I laughed confused because I was not related to THAT Alan Shaw, but I was related to an Alan Shaw, my Dad! Coincidence? I think not. I had an instant family! This family turned out to be incredibly helpful when at age 26, I had my next exacerbation. I woke up and couldn’t get out of bed. My left leg was paralyzed. This would last for a week. I couldn’t drive because I couldn’t feel my clutch, but I was able to take my wiggle of a walk to the gym and use the recumbent bike, lifting my left leg onto the pedal, making sure to stay active with my right. And after a couple weeks my body was back to normal but I was forever changed. This is where I would adopt my next Mantra: Move it or Lose it.

In 2006 I signed, by myself, and walked in my 1st 3 Day, 50 Mile MS Challenge Walk in San Diego. At this point, my Dad had previously walked in 5 Carolina Challenge Walks so he was the inspiration for me. It was my turn to show that someone with MS could walk for others with MS. The following year I convinced another girlfriend my age with MS to join me. My 3rd year she & I formed Team OptiMiStic, with the M and the S capitalized, and recruited 5 others. I gave my first MS speech at that candlelight dinner. The drug company, Acorda, also selected me and my team for a documentary about the challenge walk. Each year I looked forward to seeing my extended MS family while creating awareness and assisting others living with MS. It felt like my purpose. MS was literally paving a path of amazing people and experiences in my life. Upon feeling this silver lining with all of my being, I declared my next Mantra: Set Backs are Stepping Stones in Disguise.

By the time I walked my 4th Challenge walk, I’d become a bit of a runner. Then, one afternoon in late 2009, at the beach, some friends challenged me to join them for a half marathon the beginning of 2010. After a several beers my arm was twisted. Little did I know that would be one of the best, life-changing decisions I’d ever make. By the end of 2010, I’d run 3 half marathons. Yup, I’d been bitten by the Run Bug, hard. And each race I planted my feet somewhere new. Each time a little faster. I had MS but MS did not have me.

Fast Forward to 2011. After being let go from my job in San Diego, I created a 6-week cross country road trip filled with 15 cities, lots of friends and now lots of runs and landed myself on the beach of Wilmington, NC! I also started my blog Strangers To Friends. I couldn’t help but reflect on all the serendipity in the form of friendships, especially with people I met because of my MS. Without fear, I followed my intuition, allowing one closed door to be the opening of another. Within the next year I appeared on The Anderson Cooper Show to speak about my MS, and ran 3 more half marathons, including the NYC Half. The day I ran my 6th, I got the tattoo Love (a heart) Life (it’s actually my Mom’s handwriting) on the back of my neck, base of my brainstem, top of my spinal cord, where I knew my lesion to be. I thanked my body for each step it had allowed me to take and every experience MS had motivated me to accomplish. I still get excited when a runner behind me notices it and asks me about it. I like to think it’s my bumper sticker 😉

This brings me to 2012. I heard one more whisper, to bid farewell to the beach and take on the mountains, which brought me to where I am now, living in Denver, CO. Within 3 months I ran half marathon #8 and signed up for The Portland Marathon. My friends followed along on FB, watched how I’d not allowed the label or disease to hold me back and called me an inspiration. Ha, but after that marathon I swore on everything in me that I would never, ever run another one again. Famous last words, right?

The following year, 2013, was really tough. I broke my 5th metatarsal on my right foot. 4 months later I was in a horrible bike accident that launched me face first into the street, shattered my 2 front teeth and caused my back and neck muscles to tighten up so badly that it took another 5 months before I could run. Being forced to be still from freak accidents that had nothing to do with MS was almost more challenging than when it happened because of MS! While healing my foot without surgery, I was forced me to rely on my left leg, the one paralyzed years before, which to me was a silver lining. So, 9 months post foot break, I drove to Moab, UT for my first time and PR’d my 9th Half Marathon. To date, this is one of my proudest moments because I had to mentally and physically over come a lot to make it happen.

And here I am today, in the best shape of my life, ready to make my dream come true and take on 26.2 miles with all of you. My journey with MS seems to run parallel with my journey of running. Think back to the moment you decided to commit to the 2015 Boston Marathon to run with our team. You knew you were giving up sleeping in on Saturdays for long runs, but could any of us have predicted ALL THE SNOW? I salute your commitment because you made my Colorado Winter look like a walk in the park! But just like our commitment to accepting MS and doing something about it, we put one food in front of the other. We can’t predict the storms ahead, but we can choose to power through life, like we power through 18 miles on a 15 degree day. By saying yes to this marathon, I said yes to so much more. I made the choice to take on training for the past 4 months and to raise money for my cause. None of us can control what happens in life, but we can control how we respond to it. And I couldn’t ask for a more epic way to use my MS to motivate me that to run a marathon with all of you. So on behalf of everyone with MS, thank you for your choice to be here, so that we can run as a team and do all we do to help those with MS.

Giving = Receiving

“For it is in giving that we receive.” ― St. Francis of Assisi

I love helping others. I especially love helping others without them asking for it. It fills me with joy to take the initiative and choose to make a difference. Whether I surprise someone with a smile, or simply give because it feels like the human thing to do, many times my soul feels called to be a part of a change that another person wishes to create. Sometimes I make an $18 donation to a bike ride or race, sometimes it’s reaching out to offer support because I feel when an individual need extra TLC. For others, it means spreading their word of a mission or passion while even better, connecting them together with a friend working towards the same end result. It’s all about intention and my intention is always: LOVE.
It's Not How Much You Give

This brings me to an email I received this morning from my friend, Russ Bates. Russ & I met in 2009 at the MS 50 Mile Challenge Walk in San Diego, CA. This 3 day event raises money and awareness for Multiple Sclerosis. MS is near and dear to me due to my own diagnosis in 1998 and for all the incredible friends I’ve made over the years (my strangers to friends, my silver lining) that either themselves live with it or fight to help on behalf of a loved one. Russ was a member of the Crew Team. He assisted setting up the course, delivering luggage, water, all the behind the scene work that made the weekend possible. You see, Russ’s wife, Nancy, was diagnosed with Primary Progressive MS in 1994 and passed away in April, 2006. He participated in 8 Challenge Walks to support her. Nancy went from a lively young woman to being bed ridden, but never lost her strong will and positive attitude. She never let MS get the best of her. Every year she rocked her smile and cheered on the walkers along the route. It was knowing their story, his love & commitment to the cause, even after her death, that called my spirit to support him.

For the past 3 years we have been in touch via Facebook. He constantly cheers on my crazy endeavors and I check in to see how he is doing. You see, Russ has had major health issues for the past few years. I can’t make him strong and healthy but I can try to make him smile. A few weeks ago, after reading a link he posted on his page, I realized I could possibly help Russ a little more than I had in the past. Here is his own version, his story, that he sent to me as a THANK YOU Today. I’m honored to share with you…

My friend, Russ Bates

My friend, Russ Bates

Strangers into friends…

“When you first meet someone you never know how they are going to affect your life. Such was my initial introduction to Carlyn Shaw. We knew of each other from a previous event in which we had both participated, but were officially introduced at an organizational meeting for San Diego’s Annual 50 Mile Challenge Walk for MS in 2009. I was smitten with her effervescent positive attitude toward life, even in the face of having a potentially debilitating disease from which (as for now) has no definite cure. That years walk turned out to be very special for me as it turned out to be my last, after 8 years of participation. Carlyn’s enthusiasm for life was on display all that weekend as her team of walkers provided humor, fun and friendship for everyone. Later that year I moved away from CA and lost touch with Carlyn.
We reconnected on Facebook in 2011 as she was traveling across the country, on what I jokingly called her “Stranger into Friends, USA tour”. We have not seen each other since our walk days, but we do maintain communication on FB to this day. Her various posts are always uplifting and positive, even as she deals with her own daily trials.
Over the last 3 years my health has had several major downturns (a stroke & 2 heart attacks) yet Carlyn has continued to post messages on FB that lift me up and always make me feel better about myself and my situation. After my most recent heart attack this past month (June), I realized how lucky I was to still be alive. Immediately I felt the need to go see my family (my Mom and Sisters in CA and my Daughter in Seattle). I had a fear that I may never get another chance to see them.
Being extremely broke and with no extra cash in sight in order to make the trip, I turned to a site on the Internet (GoFundMe) designed to help people raise money for any need they might have. I shared my story on FB and almost immediately Carlyn popped up and said she would forward my story and request to her friends. She literally did so and within 12 hours I had already raised more than half of my goal ($800) through responses from her good friends, most of which are the result of her Strangers into Friends efforts. I don’t know how to repay her other than to say THANK YOU and continue to spread the good word about her efforts to spread friendship and love throughout the world. She is a great friend and someone that I am truly blessed to have met.”

An enlightened perspective from Jeff Maziarek in “Spirituality Simplified”

“Remember that every cause you initiate leads to an effect. So, when you give from the heart, you set energy into motion that must in turn find its way back to you in some form. I say in some form, because there is no telling how or when the effect may show up.”

Choosing to share his page with others made complete sense at the time of sending.
1) I suggested $10, a small amount but when added up makes a big difference. Plus, who doesn’t love the awesome feeling we instantly receive knowing we helped someone in need (I know I sure do!)
2) Money is tight for me right now. I knew that alone I could not fund his trip. The idea literally popped into my head that I had a chance to REALLY make a difference if I shared his story rather than simply donate $20. And, usually I simply donate. But good thing I listened to my intuition… because it was right! My awesome friends/family together donated $510– FAR MORE THAN I EVER IMAGINED! – for their own reasons, Portia, Rabiah and My Mom, Susie, chose to carry the torch and keep the ripple in motion. I love them so much for their selflessness. I can’t begin to describe the pride I felt in their contribution, knowing they were touched by his story and my effort to support him. AND…I’m thrilled to say not only did he accomplish his goal but his flights are booked and he will leave from Kansas to see his family very soon.

The point of this post is to highlight that GIVING = RECEIVING. Not only will Russ visit his family… but now his family receiving in the hugs they will share. Not only did my sharing of his letter come from a place of hope & love… but the end results surpassed my expectations! Not only did it make me happy inside just knowing I extended a little extra help to him… but receiving this email, validating my simple effort even that much more, well friends, THAT is the greatest gift of all. LOVE & FRIENDSHIP. And… WOW, what a PERFECT display of Strangers Turned Friends helping each other. Like I always say, we are ALL connected… somehow, someway. 🙂

Today I challenge you to think how your giving is being received. How will YOU create a ripple effect? I’ve shown that it doesn’t take money to make a difference. Sometimes it’s a matter of stepping up when you feel called to do so. Not being afraid to stand out for someone else. If your intention is to spread love & light, I promise you, that love & light will be received. Sometimes from strangers meant to be friends.

Namaste Friends, the light in me bows to the light in you. 🙂