Category Archives: Blog

Stories I want to share along the way …

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…

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Then came the expo!

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“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!!!

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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..

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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!

xoxox,

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October 28, 2018

NYC, I see you!!

Here I am, embarking on the last week of my marathon training and can’t believe I am doing this, running the NYC marathon.  I have been dreaming about this week my entire life and never really thought it would be a reality.  So many emotions – fear, panic, joy, gratitude, hungry, sweaty, tired and again thankful.   I had been nervous to write about it here, only because my training wasn’t perfect, but is there really a perfect training plan?

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My team left this on my door last Friday and did you know Manhattan was that big?!?!  I will finish, I feel good about this.  I am not going for a time, I am going for my bling.  I will cry, I will cry some more and at the finish line I will bawl.  I tear up even as I write this currently.  Ever since May 2016, I started to believe in miracles.  I learned dreams come true, it just may not happen per google calendar!

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I am ready, my nails will remind me that I trained and as it says, keep calm and just run.

I am a dystonia runner, I am a soon to be 2-time marathoner!

All my gratitude,

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April 4, 2018

Happy 12th year to me.

Yet another year as part robot in the books. One of my co-workers recently renamed me Carrie Siu Bot and while it is funny, I truly do live my life as a “bot” – making sure I am charged and fully operational for maximum output!

My growth is always one to reflect on.  To appreciate.  To smile with gratitude.  I went to church on Easter Sunday and was reflecting on that Sunday pre-surgery asking God to get me through the brain surgery.  Fast forward 12 years and how quickly I forget to thank God every morning for the miracle he has given me.

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I am more confident now in saying I am disabled. After 30 years of living with a rare disease, I have accepted.  With acceptance comes peace.  Once I got to a state of acceptance, I am okay introducing myself as someone who is disabled.  I always thought I had to work a little harder, be a little better than a “normal” person to prove that disabled people can too be successful.  I don’t think that anymore. I am just Carrie, doing the best I can do, being the best I can be everyday.

I recently started taking a mindfulness course and every morning I take 10 minutes and focus on what is good in my life.  As part of that practice I remind myself that I am truly living a miracle.  Despite having 2 surgeries – 2 new batteries in the course of 10 months, I still believe that DBS has been my miracle. So today, I reflect on what I have today, what I had in the past and can only think positively about the future.  The one thing I know for certain through this crazy part robot experiment, is that I am so thankful everyday for my family, my tribe and the miracle of modern science that I am able to be a spokesperson for such a rare disease and an advocate for medical research.

 

 

 

 

June 3, 2017

New City, New Job, New Apartment, DYING BATTERY!!

I try to balance the good and the bad of being part robot/terminator.  The good is that I run, I work out, I kick major butt…the bad – a declining battery.  Athough I have never had children, I compare life with a dying battery with childbirth, it’s a painful process but when you get better you forget what you went through because you are so happy!  But here we are turning 42 with an almost dead battery.  It’s been super hard.  My eyes are bad, I get headaches and I sleep alot….like alot!!!! And sadly last week had to stop working out…

Because I am stronger than I was several years ago, I have been very open about everything in my new life and everyone has been so understanding.  I tend to put so much pressure on myself to be the best, so to be reassured that you are already at your best has been truly wonderful!  For that I am so grateful!

Piece of me wants to be sad and feel sorry for myself but then the intelligent part of me reminds myself that this is going to be fixed very, very soon!  And that I will be back on the training plan!

Last night I told myself this is the universe giving me a very long period to rest.  Because when I get my new battery I will be coming back stronger and better!!! The lesson learned from all of this – don’t let your battery get so drained since it affects all aspects of your life, so go see your doc and get it checked!

I’ll be back soon…better and stronger!

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March 8, 2017

Ouch, has it been that long since I have reached out and written…Life, gets in the way so often.  So, last year was a whirlwind, train, train, train and 2017 hasn’t brought the discipline I wished I had last year. The 4:30am runs, the endless miles and I am embarrassed to say that I have likely logged less than 15 miles all year!  But that’s okay.  This is life.  We never know what is going to be, we never know what that next day brings.  I often think of life with DBS no difference than life in general.  It happens, good and bad.

Realizing your battery will die sometime this year when you had all these trips planned, moving to a city, starting a new job can definitely overwhelming.  The first thing that I always do when I realize the time is coming near is to say when can I squeeze this surgery in.  Then I stop, pause, meditate and realize that getting a battery change is a forced pause, a reset, a new burst of energy, a way of remembering how lucky I am.

It’s been almost 11 years since the day that I had my entire life change and I will try and run 11 miles on April 4, because I CAN and because it reminds me how lucky I am.  If I can’t do 11, I will still do what I can, because my life is truly a miracle.  I will break down, I will be overwhelmed with emotions, because I still remember April 4, as clear as today.  I remember the smell of the drill in my skull, I remember the jokes, I remember promising my team if I was ever so lucky I would run a 10K, ha!  And look at me today over 10 halfs and 1 full and so many more to go!

So as much as some plans will be cancelled in 2017, I always have to remember the big picture.  I am an athlete, a runner, who everyone couple of years needs to get a battery change and you know what that’s okay.  Plans will always get cancelled, things will happen and I remind myself that’s the story of life.

January 1, 2017

New day. New Year, New Chapter!

For the last years of my life, I always start with – I want to lose 10 lbs….this is the first year that I can truly say the quest for abs didn’t make the list.

For my new chapter aka the New Year, I decided that these are the things I would like to focus on:

  1.  Be fit.  Be Athletic. Be Strong.
  2. Sleep more
  3. Be more social in real life and not on the phone
  4. Read Daily
  5. Meditate Consistently
  6. Stretch more
  7. Keep my diet clean as possible without depriving myself
  8. Practice daily gratitude
  9. Laugh more

These all seem easy but they really aren’t.  Every day will be a new page, a new chance to work on these  goals.  I am working on my race schedule, but if my Dystonia and my batteries work in my favor, I plan on running the Lululemon Half in Vancouver and the NYC marathon.  2017 is about less races and more quality training.  It is less about the race bling and more about the effort and the bucket list races.  I am always evolving into a better me and I am about to embark on an even bigger adventure, announcement soon!

So in 2017, it is less about “Dystonia Sucks” and more about appreciating the life that I was given, the life that I lead and those that I inspire through being me.  I truly believe that if I was “normal”, I would be a different me, but you know what after a long, long road, I have come to appreciate and enjoy this me!

To writing your new chapter!

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2016

This…just this…pause for a second and remember I have dystonia.

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Life’s lessons.  Every year I vow to post more, to write more, to share more and every year life gets in the way.  One thing is certain though, I always write a year in review at the end of the year and a year of resolutions in the new year, so 2016 you rocked my world!

For 2016, I had set a Big Hairy Audacious Goal, I’ll let you the reader tell me if I succeeded, I ran:

  1. January – Disney Half
  2. January – Miami Half
  3. May – Brooklyn Half
  4. July – Chicago Half
  5. September – Philly Half
  6. October – Halloween Half

I had one more to do but life got in the way and just couldn’t make that race.  But 6!  Yes 6, I am so proud of myself.  Prior to this year, I had run a total of 5 halfs!  I am not without saying thanks to my tribe, my run squad, my tribe of girls that what’s app daily about what workout or run we should do today.  I am beyond grateful to all my friends and family that come on this journey with me.  Thank you to everyone that supported me on this journey.

So why this many? Because I needed to prove to myself that with the right diligence and training, I could do anything if I worked hard enough.  I needed to stop the chatter in my head of “I can’t”.  I needed to realize I wasn’t going to come in last.  I needed to prove to myself I am a runner.  So as of 2016, I call myself a runner.  I don’t say “oh I run/walk”, that’s irrelevant. What is relevant is lacing up and running.” Just do it”, as simple as Nike’s mantra.

2016, thank you.  You taught me I can be greater than I think.  You taught me I can be a runner.  I call myself an athlete now, I earned it.  Every 4:30am alarm during the summer for a long run, every evening run, every speed session, every strength training session, that was all me.  That was my input.  My output was running my best times at age 41!

I won’t be running for the next 3 weeks, due to a back injury but this rest is earned.  I am not the only athlete that gets benched many great ones do.  I call my rest period my chance to get a tune up, to start 2017 even better and stronger.  So what’s for 2017? I guess we’ll have to wait and see in my next blog!