NYC Marathon 2018

I never in my wildest dreams thought I would be writing this post.  I am a NYC marathon finisher!  Words can’t describe what an honor it is to be a part of this hard working alum base.  I deserve to be here.  I owned every step of those 26.2 miles.  My training wasn’t perfect.  I got sick 2x, I planned an Asian trip 6 weeks before the race, I wasn’t sure I would make it.  I was sure that I did everything I could to be as ready as possible.  My batteries were good.  I ate properly. I slept. I gave up alcohol. I became my best self.  Yet, the nerves were high the week before. I had phantom feet pain.  The self doubt was getting the best of me!  The night before I left for NYC, I made my shirt.  It gave me a sense of peace.  I put it on my tshirt – I am a dystonia runner.  I owned it. I became proud of my disability…


Then came the expo!


“It will move you”…This just stuck with me, I had no idea why at that moment but now today writing this I know why.  My life changed that day.  Something has been missing from life recently and I couldn’t put my finger on it – on November 4, 2018.  I found what had been missing – my purpose, my why…

I went to bed on Saturday night and it was the first night in 3 weeks that I slept well.  I slept like I knew I had done everything I could to be ready for this race!

Then comes the morning – ferry at 8:15; 1 hour line up for the bus and I getting to my corral at 10:55 for an 11 am start…and boy was it glorious.  Promptly at 11, the cannons went off and Sinatra started playing – Start Spreading the news…I am leaving today….I want to be a part of it – NEW YORK, NEW YORK!!!


and I was off….the weather was glorious – 50 degrees, not a cloud in the sky, sunny and little humidity.  My smile was there, my heart was in NYC and my legs were going to do this….I had written a game plan and a nutrition plan.  I never veered.  I had so much love on the course…and NYC I fell in love with you all over again!

My friends came out – Mile 11, Mile 19, Mile 22 and Mile 23.  Those hugs got me through all the miles.  I never once thought I wouldn’t finish, even when I cramped up on the queensboro bridge with the sharpest pains in my inner thighs.  I knew I was stronger than these temporary pains.  Every hug energized me, every smile reminded me of every surgery and every battery malfunction I have ever had….then came the moment that I will never forget..


Probably one of the most surreal moments of my life – I ran by the same door I came out of 12 years ago – April 4, 2006 right after my brain surgery after I left the ICU…I saw myself being wheeled out on the chilly morning and here I was jogging every so slowly in front of the same door….I stopped. I cried, I lost my breath.  I realized what I felt was lost in my life – my purpose.  I had forgot what a life I had, what a miracle God had gifted me and I felt like I received that miracle again!  The last 3 miles were hard, I was tired, my left foot hurt, I wanted to be done…so I did what so many people told me to do – keep moving forward, don’t stop just one foot in front of the other….then it happened…

I finished.  My greatest hero called me not even after I picked up my foot off the finish pad – I said Mom – I did it!!! As I sit here typing I realize all over again – I did it!!  Through out the last week, so many people have reached out and reminded me how much my smile, my grit and my perseverance is inspiring.   I want to continue inspiring, teaching others being disabled isn’t a life sentence, but an opportunity to show others that not even Dystonia will keep me down from my reaching my dreams!

And as always a special thank you to my biggest cheerleader – my sister, who is always on top of making sure everyone is kept in the loop of all my running updates!

I am not sure what is next … but I tell you what I do know – I am a 2018 NYC marathon finisher!




May 12, 2014

Life is on the mend…

I have started slowly getting back to being a little physical after 6 weeks of doing nothing and 4 weeks post surgery.  I am taking things slowly…I always am so worried about my DBS and Dystonia that I also forget I am human.  I have been having persistent pains in my shoulder and my class instructor made me go to the doctor last October and we tried everything and the pain kept on getting worse.  And as the ortho tried to diagnose the problem he suggested an MRI.  I politely refused, and he knew why, he saw this…


The same xray I was looking at…and I was like you understand that because of my neurostimulator, my lifeline, I don’t have the luxury to have MRIs..So I said to him I can barely move my arm after four weeks of not doing anything and I guess the pain is only getting worse, why would this happen….and his answer cracked me up yet moved me, he said – most athletic people get injured from time to time…me, athletic?  Was he speaking to me? I looked around and I was the only person there…I repeated, well what are my options and he said after 6 months of trying everything and without means to MRI I have to go into the shoulder…so there we have it…The human side of me also wears down, experiences injuries, I am still human!  So though this sucks and my goal of running soon will still be postponed after that surgery, I am happy to be reminded that I am still part human!  

May 6, 2014

Life is a series of conversations…

This weekend, I had the luck of not only planning my 10 year reunion from Stanford but also had the honor of chairing the reunion committee.  That was planned since last October.  April 11th was not.  Battery changes are never planned they just somehow sneak their way into life.  So as I was planning for my surgery on April 10th, I was also firing off emails to my committee and friends reminding them to sign up.  The reality was I wasn’t even sure if I was going to make it.  I called my old roommate and I told her my dilemma and she said – Carrie, reunion can’t happen without you, you are class of 2004.

So 3 weeks post surgery, I rested with one focus planning an amazing reunion and making it to reunion.  It was epic!  I am so happy and inspired by so many this weekend.  I had classmates from all over the world come up to me and say – I love your running journey, I love seeing you 10 years later with a second chance at life, I love seeing you take your miracle and spread your cause around the world…I can’t tell you how overwhelming the whole weekend was.  This is a class of very accomplished execs, VCs, business professionals and they voted me one of the most inspiring, me – dystonic carrie, batteries and all!  

When I set out on this journey, none of this was the plan.  I had deep brain stimulation.  I was given a second chance.  I took that second chance and literally ran miles and miles….I spread the word, I inspired many and I am not done yet.  I was so excited that I made it to reunion.  What many didn’t know was that on Friday and Saturday I was at about a pain level 7, but pain is temporary the memory of this weekend will be forever.  I am inspired all over again to spread the word, to inspire many to know to work within your limitations and believe in miracles. One of my classmates reminded me that 12 years ago, he said what is wrong with your leg? why do you walk like that?  Those memories are hidden and I remember my response in those days – I have a rare disease.  Fast forward 12 years later and my response to why do you have scars on your chest? Is a proud, chest lifted answer – I have Dystonia would, you like to hear more… The other lesson on this journey is patience.  I went from running 5 miles at the beginning of the year to barely being able to ride the bike for 20 minutes today.  But as always, I will build back my strength and continue to be patient for the next 3 weeks.  And despite being frustrated I am always reminded I will be back to running across finish lines in no time!

Class of 2004 thank you for all the conversations this weekend!  The timing was perfect!  I am inspired all over again!



April 10, 2014

Train has left the station…

Bags are packed, the same outfit I have worn to every surgery is ready and I am calm.  This surgery has felt a little different for me since I have had to see a deterioration in myself – a decline physically and mentally which produced an emotional result 😦

Everyone has been asking how are you feeling and I have to be honest – scared, nervous, frustrated.  Looking forward to eating ice cream sandwiches, which I never eat except for surgery.  Looking forward to cheating on my diet 🙂  Not really looking forward to my 6th surgery in 8 years.  I thought I had signed up for a brain surgery and then a battery change every 4-5 years.  So we should theoretically be on the 3rd not the 6th.  I am learning though, life happens.  I can’t control why my past batteries have malfunctioned, I can’t control how fast this battery is declining.  But what I can control is my attitude towards tomorrow and the recovery.  So here goes to a quick and easy battery replacement, to being recharged and renewed and to being positive and brave during the whole process!  Running, pushups and burpees – see you in 6 weeks!  It could be a while before you see me back on here, so wish my luck and thanks to all my readers for being on this journey with me!

April 2, 2014

Days are now in single digits!

I have always used this blog as a forum to help others to inspire others, to see a woman’s journey with a rare condition through my eyes.  I am not sure I have ever felt the way I have been feeling these days..going through a battery completion.  I no longer drive – my eyes are too weak, my hands are too shakey – I want to be careful to myself and others.  I am tired by 3pm.  I can no longer form a sentence by 4.  I have thoughts in my head but making them out of my mouth is too much effort and sounds garbled.  Work gets harder and harder every day which for me someone who has prided herself as a career woman has made me frustrated and sad.  I don’t have energy to work out…my life has truly changed in the last several weeks and will continue to do so for the next week and half.

I always hear, Carrie you are on of the strongest people I know.  It is a statement that bothers me.  Dystonia has been my super power, the power to keep on moving, the power to keep on striving for better.  Dystonia has given me strength.

This morning when I woke up with minor tremors and an obligatory feeling that I may be getting sick (happens every time before surgery), I can see the end…I can see the light of the OR and for the first time I have to say this is not a marathon it is definitely a sprint.  April 11th can’t come soon enough…My OR time has already been changed and I know I’ll be hungry and thirsty that later it gets pushed back but you know what, I don’t really care, I just want to get back to a place where I have energy to speak, to drive and to be physical.  So I share my story to let all of you know listen to your body and always be your own advocate in this healthcare world we live in.

I am thankful to the many heartfelt words I have heard from friends in the last several days and weeks!  I am truly lucky to be surrounded my all of this love!

March 30, 2014

And the countdown begins…

So tomorrow begins my 6th surgery journey since I decided to embark on this journey 8 years ago.  Pre Op makes the surgery start becoming very real, it’s no longer a hypothetical but a realization that the train has left the station.

On April 4th, 2006, I had two holes drilled in my head not knowing what the outcome would be.  And here we are 8 years later, so many miles logged, so many races ran, so many people inspired and yet I am somewhat scared for the next 11 days…I have eleven more days of being super careful, 11 more days of being a little shakey, 11 more days until I get “recharged”.  DBS has changed my life, given my life, however when the batteries start dying, it is not fun at all.  People ask my what does it feel like?  I am highly emotional (and not in a good way), my body gets confused not knowing from one moment to the next what’s going to happen.  I start to have bad dreams….like the surgery won’t work and I just got lucky for the last 8 years.  My mind starts racing in a thousand directions and I have to stop and breathe, realize that not only am I getting a new battery but I am also getting an upgrade.  I am going from the original iPhone to an iPhone5S!  But let’s be real, surgery is surgery.  It is not fun.  All those plans I made for the next 6 weeks – gone, cancelled.  Dystonia and batteries failing don’t happen on a schedule it happens when it happens.  And I am realizing this is what Dystonia has taught me – appreciate the good and don’t dwell on the bad.  It always gets better, I just need to be patient.  

I always remember this week, 8 years ago, waking up every morning and wondering am I making the right decision, what if things didn’t work out and then remembering I would not be any worse off…So as ironic as it is that 8 years later I am planning yet another surgery which may be frustrating and hard to go through, I have to remember that DBS, Medtronic and friends and family have helped me get through 5 surgeries and I will get through this one as well.  So to the start of the less than 2 week countdown…here we go!

March 22, 2014

photo (15)Heroes…

Happy Bday to my wonderful sister, who has like me a rare genetic disease, though younger she has accepted our friend so much more than me.  So to the bravest girl in the world, Happy Bday!

Date for my surgery has been set and although I am relieved the next 20 days are going to be tough.  I am going to have to brush off the cane, I am going to have to retire the running shoes and I am going to be sleeping alot more.  I am relieved to know that all of this will be fixed very soon but it doesn’t make the interim any easier.  Walking is becoming more tedious, it makes me scared being reminded of a life I used to have.  It haunts me in my dreams that the next battery won’t work…but I do see the finish line, and I have to admit this feels like the last 2 miles of a marathon when I want to give up and I know I just have to put one foot in front of the other.  I have been on this journey for almost 8 years and even though I have been through many highs and lows, I have to say I would do it again in a heartbeat.  So I am not giving up, I may be a little twisted more than before but with the miracles of science I should be back to normal soon.

Thanks to my little sister for inspiring me to have the DBS surgery and being my constant advocate on days when I can’t, I love you more than you will ever know.

February 2, 2014

One woman that did!

Today I participated in Cycle for Survival and due to low participation on my team I ended up cycling for 2 hours.  For those 2 hours I smiled in Jen’s memory, cycled harder and was grateful to be inspired by one woman that wanted to raise a cure for cancer.  She hasn’t stopped dancing in all of our souls and her legacy carries on annually at Equinox clubs worldwide.  By hour 2, I started thinking was this something I can do, could I Carrie Siu Butt take a disease and try to make it become more prominent, raise more awareness?  I think about this all the time, has Dystonia been my calling to help others? to inspire others?  A friend of mine told her daughter about me and she said see – Carrie is a miracle.  I am!  I have been through many life changes but the one thing that is constant is that Dystonia has been with me for 27 years of my life.  As I embark to celebrate my 8th year of DBS this year, I am thinking how to use my good fortune to spread the word – still through running, but is there more I can do? Write a book? Speak at engagements? I need to educate the future generations who may get this gene, that it is not a life sentence, it is not the end of who you are…but the beginning of a different journey…a special one…we are all special in our own way inside and out.  

To Jen, wherever you may be – I danced for you and with you today!  This world misses you but we are so happy to have you in our hearts at least once a year if not daily!

January 29, 2014

Guilt, Forgiveness, DBS

After spending a very long day in LA today, I got to the airport and had to wait for about 5 minutes for a female assist.  As the minutes went by, the more frustrated and cranky I got,  Then when she came over she asked “Do you know the procedure?” to which I begrudgingly answered it’s been eight years, yes I know the procedure.  And because I was already annoyed, I looked up to seeing three TSA agents staring as I got my pat down which made me really angry.  I started to get really pissed and then started to feel terrible guilt.  Why am I getting angry at a situation when the device which has given me life is causing the situation?  

Then I realized I was being stupid, I was being ungrateful for the luck I had to have had such a miraculous outcome…I should be proud of my 8 years of pat downs….it has been the gift for helping me run for those that can’t, it has been the gift that has taken me paddleboarding, snowboarding, skiing, snorkeling; it has given me the greatest gift to live life fearlessly.  So as I forgive myself for being mad at having to get a pat down, I am proud that I have not taken my second life for granted, that I try new things but most importantly that I raise awareness for those of us that can’t run or walk!  Dystonia has been my life lesson and in a moment like today I realized it has been my greatest gift as well!


December 27, 2013

Final Blog…wow, what a year!

I am not sure this blog will do 2013 justice but here goes!  My year was full of twists, turns and unexpected surprises and learnings. From January 1st this year, I felt the year was an upward battle with no end in sight.  I started the year of with news which was so unexpected that I didn’t know what the year was to bring….two weeks later, I found out the most precious thing to me my DBS was fooling me for months…I found out I had an open circuit and that I also had to replace the battery. I still remember that day vividly opening my eyes and seeing light, after feeling so lost and dark for so long.  So Lesson #1listen and follow what your body is telling you, sometimes you just have to be your own advocate.  I am so happy I kept on fighting for myself and believing in myself, especially when other doctors told me nothing was wrong with me.

My dystonia has been something that I have always described as “the disease”.  Lesson #2Acceptance.  For the first time in my life I realized dystonia is just who I am, no different than having wrinkles or black hair.  It’s just me.  Part of Carrie.  I have finally come to accept my Dystonia and truly want to change the face of this disease.  As I reflect, I have used Dystonia as a crutch that I may have abused once or twice…but the reality is life gives us hills to climb dystonia or not…so this year I climbed and climbed and finally hit summit and learned how much I accept and love the person that is me.  So I have decided to keep on raising awareness and being very vocal about my Dystonia for the foreseeable future.

Three half marathons, 5 months.  Lesson #3 – Taking care of myself.  I have learned that running marathons or races don’t prove that I am a bad ass, I AM A BAD ASS.  I don’t need to push my dystonia or my DBS to feel like I have to prove anything.  For a while, I felt lost without an identity without being able to say I am training.  So now I have shifted to saying I am a runner and you know what – I am!  The after effects of running long distances are too much and I am happy those days are done….I am excited that I retired on top.

Final, but most important – Lesson #4 – Gratitude.  I had no idea the outpouring of love my friends would have for me this year.  My family has been truly supportive and my friends nothing short of amazing.  I am always shocked at the amount of money I have raised for research to fund a cure.  My friends have been abundant with their wallets to support me in a cure for this disease.  I also realized I want to thank each and every set of eyeballs that read this blog.  Through this blog alone, I feel I educate more and more people globally about Dystonia.  So thank you for reading and sticking with me!

And as for 2013, thank you for the lessons and the learnings as hard and painful they may have been.  I am excited for the future and 2014.  These 4 lessons will be constantly with me and I am ready for a new year!  

See you in 2014!