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October 3, 2013

Posted on by Carrie Siubutt

Why I run…

Today’s blog was going to be the big splash – exactly 1 month from today I will be retiring, blah, blah, blah..but instead things have happened in the last 24 hours that have changed the theme of this piece tonight.  Life has a way of throwing you curve balls and seeing how you react…the funny part though is that in today’s world those twists and turns get delivered in a text message.  So instead of letting everyone know that I can conquer the DBS world, run for all of those that can’t, I just want to let everyone know Dystonia is a test of one’s strength everyday.  It throws you curve balls in physical twists and turns, in ways that you just can’t anticipate.  I have struggled with this disease all my life and someone recently pointed out to me that I refer to myself and the disease, not just “carrie” and that struck me.  Dystonia is me, part of me, nothing different than having blue eyes or brown hair.  So I no longer refer to the disease I just talk about myself now (albeit 7 days)!  And after my last half, I’ll be running my 10K in Napa and 10K in Marin for me, to be healthy to be sporty and to have fun – not for THE disease not to prove that I am stronger than The disease, but because I can and they are fun!

I wanted to share a comment, I received tonight the comment couldn’t have been more timely, tears of joy and happiness streamed down my face all at the same time but wanted to share.  I am sharing because there are so many ways I can spread the word about Dystonia and my sister does it in her own special way as well!  So to the sisters that sometime believe that hope is a strategy for a cure to Dystonia!  Scottie, thank you, your timing was impeccable!

Hi Carrie. It’s so nice reading your story and that you have run so much to spread awareness for such a horrible disease. I too have had DBS for my dystonia. And that little sister of your’s, well let’s just say I know a little about her. She has been my person pushing me to fight and tell the drs when something isn’t right. Suzie is such an awesome person and I know firsthand how proud you make her when you run. I always had a vision that when I got out of my wheelchair, that I would do what I always thought I hated and that’s run!!! I found out you were doing this run in SF because I was searching for a run myself because I have found the joy in running. Maybe it was being in a wheelchair. Maybe it’s because I felt I took it for granted that at one point I could get up and run “if I wanted to”. (And that was rare). But I do know what inspires me now…..YOU!!! You see I don’t worry about if this joy will last. I’m here, like you, standing as one of the fortunate ones that have been given this second chance at doing something positive for others. I had this goal in mind that I would run to spread awareness as long as I could and well, you beat me to that. I now see myself as the one who will carry on in your place, spreading the same awareness and hopefully do what you have been able to do, change lives. So good luck in retirement and enjoy your down time with Suzie. Relax and let others continue what you have started. You are a HERO to many of us!!!

September 30, 2013

Posted on by Carrie Siubutt

Here we go two half marathons in the next 5 weeks…

Actually 3, since next Sunday will be a twelve miler….I am ready for the celebration of ending my running half marathons, but I am never going to stop running…I already signed up for the North Face Endurance 10K…an amazing way to make a 10K challenging and fun…On to the new thing already…small 6 mile trail runs, shorter distances yet still challenging!  

I am excited to run my next 12 miles next week.  I haven’t felt stronger and more confident…life is funny…a year ago, I could barely run 4miles because my battery was mildly starting to bother me and as I train for the same run I tried to do last year, this year is different.  I remember how devastated I was so many things were falling apart at the same time and here we are a year later and slowly things are getting better, stronger…sometimes you have to remember what challenges you go through so you learn how to fight for what you really want…I am so happy I fought for myself to be heard by a doctor, any doctor and am so happy that DR. T listened…a year ago I remember thinking, what if…and I here we are almost 3 half marathons completed in one year….but what makes me happiest about this retirement is finally having my sister come see me run.  See her big sister cross the finish line and every time I think about it I start to tear up.  So many may not understand why I cry at every finish line though I have crossed many up to this day.. but to run the SF half and retire in my home city with friends and my sister is a gift no amount of money could buy…

Please don’t forget to donate!

http://dystonia.donorshops.com/product/sanfranhalfmarathon/runcarrierun.php

September 24, 2013

Posted on by Carrie Siubutt

What if I died tomorrow…

I have been thinking about something so simple for the last couple of weeks and then I had breakfast with an old friend and I had my “aha” moment…The universe has been sending me many signs, some of which I ignored, some of which I acknowledged but most I construed as garbage.  But today over eggs my friend was like do you realize we always want a nice car, a nice house, a substantial amount of wealth but is that really what will make you happy?  Because, the house may not be big enough, the ring may not be big enough, the car may not be German enough so truly is your happiness marked on material things, is that really what we should aspire for?  Then I decided to share something I have been thinking…

If I died tomorrow, I was a living miracle, I was truly honored in this world to be chosen as someone who can inspire others to greater heights, to challenge themselves, to reach for the stars.  By no means, am I Nelson Mandela or Ghandi but I am not sure how many of my friends or people in general get a message such as this:

Hi Carrie, my name is Justyna and I’m writing to you from Poland. I also have dystonia and I underwent DBS 1,5 year ago. At the beginning of September I run first meters in my life.. I’m overjoy but also scared that this happiness can’t last forever.. Your story gives my hope that maybe one day I’ll also run 10K. Wish you all the best!

It finally clicked in my head, I am extremely lucky in life, I am not sure I know anyone that can say that you have inspired me, you have changed me.  I get messages like these all the time but I dismiss them but Justyana, I heard you.  Thank you.  Be inspired, your strength is in you not me, I just was the little push you needed.

So if I died tomorrow, did I change the world? Yes, I changed the way many think about their Dystonia, helped them become more fearless.  So I realized today for the first time in a long time…I am one of a special few that can say I inspired many to be better…so what if I don’t have a BMW, Tesla or a 6 bedroom house, I have more than that, I have the gift of knowing I changed and touched many lives.  Thank you universe for making me one of the lucky few…so from this day forward, the small stuff is just that the small stuff, I will continue spreading my passion to find a cure but more importantly to inspire a 12 year old to ride a bike for 20 minutes or a girl from Poland to run a 10k!  

Justyana, I am cheering for you from the US…thank you for making me realize my purpose in this world!

 

 

September 22, 2013

Posted on by Carrie Siubutt

The countdown begins…

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Today’s run was a long run and I am not going to tell you, it was a long, exhausting one!  But I have less than a month left so it’s go time.  I haven’t been feeling too well recently and trying to balance the training and making sure to take care of myself, has been a little challenging.  But I am truly grateful for all of the support I have been getting from friends, as well as many questions – why are you stopping? I have always wanted to run with you…and you can!  10Ks, even a 15K, but nothing over 10 miles.  They exhaust my body – mentally and physically…Each step is a thought and a movement and for two hours let me tell you that can be exhausting.  

But most of all, I have appreciated everyone that has reached out and donated to my last half marathon…the response has been overwhelming…When an able bodied person says – you inspire me, I always get goose bumps.  I never think of myself as an inspiration.  I just think of someone who had a little good fortune with DBS and wanted to spread the word, the spirit that a disabled person can overcome adversity, can believe in miracles and hope that they come true…and they do…In my typical fashion, it never occurred to me in the process of being selfless that I was pushing my robotics, well the realization has come and I will enjoy my next two races…I am already dreaming of the awesome shadow box I will have of my 5 half marathon +1 marathon medals…I am so proud of my accomplishments.  I am so proud that I have run more than most able bodied people have…but most importantly, I proved that miracles happen.  I have mixed emotions but this is the right thing to do…for those of you that I have inspired to run a marathon or start training, you “Carrie” piece of me in your heart, in your strength and in your legs….

If you would like to donate please follow the link below..

http://dystonia.donorshops.com/product/sanfranhalfmarathon/runcarrierun.php

I thank you with all of my heart!

September 18th – Press Release from the Dystonia Medical Foundation….

Posted on by Carrie Siubutt

FOR IMMEDIATE RELEASE

Contact: Debbie Durrer, 312-447-5098

San Francisco Woman’s Fifth Half Marathon Retires from Inspirational Running Career

Despite living with chronic neurological disorder, Carrie Siu Butt has finished over 15 races for Dystance4Dystonia

San Francisco, CA (September 9, 2013) – The Dystonia Medical Foundation (DMRF) is proud to cheer on Dystance4Dystonia runner Carrie Siu Butt in her fifth and final half marathon this November 3rd in San Francisco at the US half marathon. Dystonia is a neurological disorder, and Carrie has served for years as a tireless inspiration for the dystonia community through her advocacy and passion for running. Diagnosed at age 12, she underwent Deep Brain Stimulation (DBS) in 2006 and has since trained for and participated in over 15 races, including a full marathon.

Carrie was diagnosed with dystonia during puberty, too young to fully understand that she would gradually lose control of her body as the years went on. But as she got older, the symptoms worsened significantly. “I was in my 20s and realized I couldn’t walk as fast as others on business trips or I was self-conscious that I was always last in a group,” she says. Eventually, it became increasingly difficult to walk at all or even put on her shoes. She began to fear life in a wheelchair.

The decision to undergo DBS was challenging. She’d seen the strain it put on her family after her sister, who also has dystonia, underwent the procedure. “It had to feel like the right time for me,” she said. “By the time I turned 30, I was facing a future of being in a wheelchair and decided to live my life fearlessly and have DBS.”

Six weeks after brain surgery, Carrie began to walk. One year after surgery, she ran her first 10k. Since then, the miles have rolled by.

In 2011, Carrie ran her first marathon in Chicago to honor her sister Suzie. It was a grueling seven hour feat – but her story inspired many. One woman who had never run a marathon before wrote to the DMRF pledging to “dedicate the next year-and-one month of my life to preparing for my first marathon in Carrie and her sister’s honor.”

After an admirable running career she never thought she’d have, Carrie made the difficult decision to retire after this November’s race. “As hard as it is for me to give up running half marathons, I know that I have run for all of those that can’t,” Carrie says. “I have inspired those that thought they couldn’t walk or run a mile and did.”

“My lasting message would be don’t ever give up, don’t fight the dystonia, accept it as your super power – your power to be different and be able to do different things that other able bodied people can’t.”

Dystonia is a neurological movement disorder that strikes children as young as eight and may affect multiple generations in a single family. Symptoms include uncontrollable muscle spasms that twist the body into involuntary movements. Dystonia affects approximately 300,000 people in North America, making it the third most common movement disorder after essential tremor and Parkinson’s disease.

The Dystonia Medical Research Foundation (DMRF) is dedicated to advancing research for improved dystonia treatments and ultimately a cure, promoting awareness, and supporting the well-being of affected individuals and families. The DMRF can be reached at 800-377-3978 or http://www.dystonia-foundation.org. 

September 9, 2013…

Posted on by Carrie Siubutt

Super star!  Sad!  Going out on top!

I have been discussing my “retirement”  with the DMRF and they have been super supportive of my retirement from long races.  Today someone from their office sent me an email with several questions regarding my retirement and I thought I would share one of my responses to the question:

8.       What helped you decide that this will be your last race? How do you feel about it?

I am very sad to have this year be my last year of running half marathons.  I realized every time I ran these long distances, I need to have adjustments and as hard as it is for me to give up running half marathons, I know that I have run for all of those that can’t.  I have inspired those that thought they couldn’t walk or run a mile and did.  Most importantly, I inspired my little sister Suzie to run/walk a 5K.  If that was what running long distances produced, I produced a miracle.  My sister was so affected by the disease it not only took her physical body but put self doubt in her mind.  The proudest day in the journey was crossing the finish line with her when she did her first 5k.  

To Suzie, you remembered big Sis as a nerd, little uncoordinated and would much rather be eating mac and cheese and cheetos than running when you and daddy were…you were my inspiration every time I wanted to quit at mile 9, tell myself I wasn’t a runner….Your tenacity to fight the disease inspired me to cross that line…Thank you for always being my inspiration, letting me be a part of your 5K and making me a better person!  These last two races you will be with me and the future 10Ks I plan on running!  Running has always been about us, carrying on your passion for the sport despite my laziness for it!  Thank you for inspiring me and others to lace up and give our best!  Everyone I dragged on a practice run or a race, we all thank you!

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I love you!

September 7, 2013

Posted on by Carrie Siubutt

One foot in front of the other…

I went on my long run today and as always when I run one thought runs into another…I realize today training is like life, I can give up when I want or if I keep on going at it no matter how many times I think I can’t do it … I usually do!  Today was no different…82 degrees, sunny and America’s cup in my background…I wasn’t sure I could do it…but….

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I did it!!! faster than ever…my pace keeps on getting stronger and stronger and my new goal is to try to get to a 10min pace for my half marathons…I am so dedicated for these next two races…I want to be so proud of myself…Today when I high fived and tagged the paws under the golden gate bridge, I was so excited that I found my groove, found my inner strength…I also had a little strength from a song on spotified..my new race song of fall 2013…Katy Perry’s Roar!  I am the eye of the Tiger!  2013, you are going to be my running year and I am going to be happy going out on top!  

PS Still very very stunned a year ago I was pacing at 13+/min and soooo close to the 10s!!

 

September 5, 2013

Posted on by Carrie Siubutt

My retirement, it isn’t often that I reflect about my Dystonia but tonight is one of those rare nights.  I have had many business people in the last several days come up to me and say I am honored to work with someone like you, I understand why you work so hard, I understand why you are such a good friend…none of these sentences made sense to me why my blog help them understand me until I started thinking about it.  I run for those that can’t…simply said, my body, my Dystonia has transformed my physical self and instead been a vehicle to raise awareness for those that will never be as lucky as me.  In this whole journey of almost 8 years, I never thought twice about running for the little 12 year old that wakes up and realizes they are in a “twisted” life and that I am wearing my body out to raise awareness for them.  It never once crossed my mind, for a while I thought it was for my own ego but I realized it was never about the medals.  It was always about trying to give my own little 12 year old body a voice, a voice to be heard that Dystonia never slowed me down.  It was always about my inspiring my sister to walk a mile, which she did…it was always about using the good fortune I was given to spread the word that you can still be beautiful and amazing despite having a rare disease.  So as much as I am “retiring” I will never stop running for the disease, it just may be in different ways.  Helping little kids be inspired is my dream, living a selfless life to inspire others is my dream…I once thought it was running a marathon, but that was a metaphor for my life’s goal with Dystonia…my goal is to show every person with Dystonia or any other disease…that a disease is not a life sentence of gloom, it is a lesson, an opportunity to use these “superpowers” to make a difference in other people’s lives.  So as much I am training for my last 2 long races, this isn’t the end of runcarrierun, it is simply a change of pace, a change of race, I will never stop being an advocate for a looking for a cure to this disease.  And for everyone that says the are inspired by me, I am inspired by everyone that reads this blog, that tries a race because of me and most importantly inspired in everyone that believes in me!

August 21, 2013

Posted on by Carrie Siubutt

…and the training begins!  I am so happy that the doc was able to identify my issues and finally hope to see some relief!  I am excited to start running again!  I am excited to be running my first SF half marathon in a little over 8 weeks!  I am so happy to be thankful for the little things.  Life is like a marathon, there are bumps, hills, ups and downs, times when I want to give up and don’t.  I have reminded myself so many times not to give up, to keep on believing in myself to get to the finish line.  So it begins…2 half marathons in SF and I can’t wait to run in one of the most beautiful cities I have ever lived in!  So San Fran watch out, I am back, lacing up this weekend and starting to train!  

For those of you looking for an entry into the NYC marathon, please comment on my blog.  We have some entries for the DMRF and would love some more runners to take part!