October 28, 2013

Blessed, Lucky, 6 more days to go

Wow…first of all I had 109 hits today on my blog so all of you reading this today…THANK YOU!!

I want to write today’s blog as a thank you to my parents.  I have so many people I want to thank who have been on this journey with me but the two that are most important to me are mom and dad.  As parents you have been through so much with me and thank you doesn’t even do it justice.  Since I got sick at 11, you did everything to help diagnose this mystery disease…from seeing specialists and coming up with zero answers you never gave up.  Mom, you stayed up with me on countless nights holding me while the disease had me so tense and uncomfortable and just gave me your unconditional love.  You stood by me when I refused to take medicine because “mommy I don’t want to throw up”.  You never discouraged my from trying out for the drill team – you encouraged me and I did it!  You never once discouraged me from doing things, if anything it was always find a way, and I did..you never said, you have Dystonia you can’t…

I wanted to go to UNC and you made it happen.  I wanted to work on Wall Street and you said go for it!  I wanted to go to Stanford and you never doubted I wouldn’t be able to do it.  You never made me feel like i was disabled or that Dystonia held me back…You let me cry when the disease got worse…You were supportive when I still didn’t want to take medicine…You weren’t surprised when I called 2 weeks before and said yup I am going to have brain surgery or for dad the weekend before…Mom, you didn’t think twice about coming to take care of me.  Mom, you came to my little NYC apartment and said first things first we need a vomit bucket 🙂  I remember seeing you as they rolled me into the OR and smiling at me letting me know all was going to be okay.  I remember crying when you left me after the second surgery because I was so scared wondering if I idid the right thing and you looked back at me and said I know you are going to be okay.

And here we are 7 years later…you have seen me run, you have seen me flourish into the person I am today.  This retirement couldn’t have happened without your unconditional love and support.  As much as I have heated discussions with you both (also know as fights) you are two of the kindest people I know and I am happy to call you my parents.  When I run this weekend there will be no point on the course I won’t think about you…I love you mom and dad!


Please don’t forget to donate…



October 27, 2013

Part Duex…

So today’s run and weather matched my sentiment, cold and dreary…I am starting to feel very sad about the end of my half marathon career.  But as I told someone today, as one door closes another one opens.  I never really set out on this journey to do 5 half marathons.  So in today’s cold, windy run, I started thinking how did this all begin…

2002- ” I still daydream about running a marathon and hope that one day they will find a cure for Dystonia.  What matters most? I want to win this fight.  I want to destroy this monster that has attacked my body.  And if I don’t so be it.” My Stanford Essay – not knowing what the future will hold…

2002 – 2005 – Dystonia worsens…

2006 – Deep Brain Stimulation and first 10K

2007-2008 – Multiple 5Ks and 10Ks

2009 – I decided I was going to run my version of a marathon (because I would never do a full!)  – 2 half marathons with a break in between – Thanks to Liz for Nashville and thanks to Heather for Chicago

2010 – 2 Battery changes and lots of life changes and about 4 stress fractures

2011 – Midnight 5K race, fractured metatarsal, failing battery, another surgery and the Chicago Marathon (as I write this, did that really happen)

2012 – 2 10Ks and many runs in Crissy Field – goal to do a half marathon in November- Battery started failing again, walking with a cane

1/1/2013 – today : Battery replacement, wire change, 2 completed half marathons with a PR on October 20th.

Today’s run – hard, taxing, sad, getting ready for the last, the one that will be the most memorable, running over the GG bridge – one of the prettiest sights in the world, friends, medal, hugs…

When I set out on this journey, I would have never believed the ups and downs of DBS.  I have done more than most have…Running 3 half marathons in one year – seriously a miracle…So this week will be bittersweet…It may be foggy and it may be cold but next Sunday it will be sunny in my heart and soul – I have to say I am truly lucky to have had the luck to spread the word that people who are disabled or crippled can be athletes too…This is me..Carrie – an athlete true to form and as I start my taper week, with knee pains and toe pains (and am aggressively icing)…I am getting very sad and can’t help but cry everyday but on the other hand, I am truly happy that I took that leap of faith to listen to Dr.T and Suzie and fight my Dystonia with DBS.  This year has been a roller coaster for me, but the lesson I truly learned in all of this, is that I want to take care of me and be able to run for the next 50 years!  

To everyone that has been inspired.  Thank you, you have inspired me as well!


October 24, 2013

Mixed emotions..Retirement…

This week has been really, really tough.  I have been exhausted beyond belief.  I have been in bed early every night since the half.  I realize now why I am retiring.  Running these half marathons are really, really tough.  I think the Nike Half was hard because I was by myself.  Because I had to think of every step by myself.  Usually when I run with a buddy, I can pace myself with visual cues from them running next to me…and this for those of you that don’t know, running with Dystonia for me has been particularly challenging.  I think of every step, I make sure I don’t introvert on my right foot…it’s a process and one that takes me about close to three hours.  I ran last night and I can tell my body wasn’t happy.  I am running literally on fumes.  I am trying to take it easy for my next one in less than nine days but it I have to say it is best I stop running these long distances.  I was so conflicted about it on Sunday, I really started to go down the path that I don’t need to stop, why now? I am in the best shape of my life and can do more…but then Monday rolled around and I remembered why….I want to be able to run forever so why jeapordize it by wearing myself out now?  It is what is best.  I don’t need to run 3 half marathons a year to prove I am a rockstar…I just need to be fit, strong and healthy…and that can be done in a healthy manner…but I will be honest I cry every morning thinking this will be my last half marathon…I have made a vow to not cry when I run across the bridge but be happy I had this realization before my dystonia got worse….

On the other hand, I am very excited for the race because my friend John is flying from NYC to run with me.  He had always said he wanted to run a half with me…that was his dream.  What an honor for a friend to say that!  Then one day I get an email saying – kiddo we are doing this!  John has been on this journey with me for 11 years, he has seen me go through many cycles of sadness as my Dystonia progressed…he doesn’t even know this but when the disease got worse, he gave me a book – “When Bad things Happen to Good People” and I have slept with that book next to me for the last 11 years.  John you are completing my dream to run with my bud JJ!  I am gearing up for a finale I am sure I won’t believe…my friends Carolyne and Heather, have teamed up with my sister to make this course fun along the way…I can only imagine the mayhem along the course and I will laugh the entire way…

…and to Suzie, this run is for us!  I know running has always been something you loved as a little girl.  Running with daddy as I stayed at home and read a book.  I realized 6 weeks ago these running legs have been yours and mine…You have inspired me to be the runner that you were meant to be and your courage to go through all life has given you and still be able to smile.  I thank you for always giving me advice when I feel like my batteries are failing or when I just don’t feel well.  I am excited to see you at the finish line…I am excited you get to finally see me run it has been one of my dreams to give you a big hug at the finish line!

To mom, dad and all my friends, you are all amazing, without any of you in my life, I would not be the person I am today…Thank you everyone for alway believing in me..more to come as I rest up for my finale…I’ll leave you all with one of my favorite moments!


October 3, 2013

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!!!

April 4, 2013

Happy Anniversary, Happy Birthday

7 years ago…

I look forward to this day more than any other day of the year.  This is the day where I cherish my heart, my courage, my tenacity and my strength.  This is the day when I feel nothing can hurt me, nothing can break me down…this is the day 7 years ago I had 2 holes drilled in my head and still laughed, still made jokes and treated April 4, 2006 as though it was my last.

I’ll be honest, I remember going into that surgery thinking, how will I look in a wheelchair…this surgery won’t work, how will it? No one can tell me why it does…but I may as well have fun with it that day.  I woke up, I smiled, I saw 7 inches of hair fall to the ground, smelled the bone of my skull being torn apart with a drill, but I saw relief…relief knowing that I had done all I could do and DBS was my last shot…It will like being in OT with 3 seconds left and I had to make the 3 pointer….would I?  Who knows but take the shot!!!!

In the past, I usually thank everyone who helped me through the bad days, through the snow storms, through the denial of the disease but today I want to celebrate me.  I want to acknowledge it takes strength to make a decision like mine.  This anniversary may mean more to me because of the last several years….7 years and 5 surgeries later…I have had many highs and many lows.  Dystonia and DBS have played their hide and seek games with me…3 battery replacements and one wire replacement have been completely heartbreaking but have also made me stronger and ready for the next setback.  This last fall, when I had to be turned off may have been the worse but here I am….7 years later, 1 marathon, 2 half marathons and countless 10Ks later, mud races, TRX classes, hikes — I feel like I am the luckiest girl in the world!

It has taken me seven years for when people say you inspire me to reply with a simple thank you.  

It has taken me 7 years to refer to myself as an athlete.

It has taken me 7 years to learn a day off is not a sign of weakness.  

It has taken me 7 years to learn not everyone is made to run a marathon.

It has taken me 7 years to realize being last still means, I laced up and ran the race.

It has taken me 7 years when in a workout class to say I have to modify, I have Dystonia.

It has taken me 7 years to realize its okay to ask for help, it means I am strong.

It has taken me 7 years to ask for a hand on a hike and not be embarrassed.

It has taken me 7 years to realize I am beautiful inside and out what people see..not the  monster Dystonia, I think they see.

It has taken me 7 years to touch my scars every morning and appreciate the miracle they have brought to me…

It has taken my 7 years to not stop believing…I haven’t stop thinking I can’t inspire friends and strangers to run for the Dystonia cause.

It will take me 7 more to continue the fight and I will not stop spreading the word to help find a cure…

Please do your part and donate to my next half marathon to help find a cure for Dystonia…


and 7 years later I still cry at this screen when I write this anniversary blog, because there is nothing about April 4, 2006 I will ever, ever forget.

Happy Birthday to me!

March 25, 2013

Candy Cane…

Today I was in the process of a move and in the last group of items there she was, in all her glistening and glory – my cane.  My first instinct was to throw it in the garbage, then I got angry and then I started to have hand tremors remembering all what that cane had meant to ME.  Then I began taking deep breaths and realized that the cane means relief to others – mobility, a sense of normalcy.  So why was something that was meant to help me become a source of anger for me?  I realized that was because I am still dealing with what it means to have Dystonia…it means that my mobility relies on wires and batteries, that I am going to have occasional hand tremors and most of all, I really can’t run if DBS didn’t exist.  So I realized after 5 minutes that Candy Cane was my friend, not my enemy.  Candy helped me walk the streets of Manhattan when my own legs couldn’t and she helped me stand tall on the days I couldn’t.  So Candy made the move, she is a reminder to me of what can be and how nice it is to have a friend to lean on :).

November 11, 2012

Help. Need.  Appreciating every day to its fullest.

Sometimes in life, you need to look at yourself in the mirror and accept what you can and can’t change.  When living with dystonia, there is the unknown fact that you live everyday to the fullest.  The day you can walk or run, is a day that is truly a miracle.  A friend of mine once told me, when you blog it all seems so happy, so rose colored; please let everyone know of the lows, the bad days.

So here goes.  Sometimes you have bad days, sometimes you have to ask for help and sometimes you don’t know how to.  But “normal” people think its so easy just say “hey, I need a helping hand”.  What most “normals” don’t realize is that help means: OMG is it getting worse, OMG am I just having a bad day, OMG please let it be okay.  Dystonia is never really defined in a medical journal in how it unfolds when you are 15, 20, 25, 37.  What Dystonia has taught me: is to find a reason to smile, is to find a reason to appreciate every step I take and to realize life is too short to get caught up in the minutia of the BS but to remember what is important – a smile, a touch, a jump, a random act of kindness.  What DBS has taught me is the experience of loving, loving myself, loving others and learning how to trust.  What DBS gave me is a miracle to aspire to be inspirational.  DBS is a gift to me and even if I am having issues with the DBS what I have learned is that miracles happen and I am truly grateful of being a living miracle.  I am truly grateful of my family, my friends and the people that remind me everyday that I can walk.  

Be thankful for everyday, thank the ones that love you the most everyday and cherish every step you can take.



April 27, 2011

Dystonia…What does it mean to me?

I spend so much of my time writing about running and be physically fit, that I don’t think  I have ever thought about what is Dystonia, other than the clinical definition that you can find on Wikipedia. Many don’t know that I suffer from a disease thankfully because of Medtronic and their amazing technology for the Dystonia.  But DBS is not a cure.  It is a temporary solution to a problem.  Dystonia means many things to me depending on the day, the weather, how I feel but I do know I think of my disease as a set of rolling hills.  I own the disease.  I refuse to let the disease define me.  There will be great days and there may be bad days…that’s life.  Dystonia has helped me become stronger and be a fighter….I sometimes think its the reason for my success.  The reason I work so hard.   So despite the bad days, I try and not feel bad but remember the bad days when I am on a 10 mile run and smile for 2 hours on that run.  The ground, the feeling of my feet on the ground, I love it all and I know the Dystonia makes those runs make me feel like the luckiest girl in the world.  Dystonia is not my crutch, Dystonia is my reason for enjoying life.

April 12, 2011

Stubborn.  Changes.  Embarrassment

I am struggling to write this post only because it is hard sometimes to be honest with yourself and others.  This weekend was not great.  Quite frankly it was hard.  I smile all the time and make sure everyone is aware that life is great.  Big anniversary coming up…ignore the signs, it will go away that’s my philosophy.

Unfortunately life unfolds.  This weekend I had a shift with my DBS and Dystonia.  What happenned? Why? We may never know but I have to say this time I couldn’t ignore the tremors, the limp, all of it….there, shaky, me.

As I am writing this, I am embarrassed to admit I am human, to admit I had to have friends take care of me, to admit that sometimes I am stubborn and to admit I have dystonia.  I was so angry this weekend.  It wasn’t in outlook 🙂  My friends were amazing, they all pretended they didn’t see the symptoms.  Things are better now but I am still a little embarrassed.

This week’s blog was supposed to be about how my parents raised me to be a strong person…as my mom always said – I don’t know where you got the strength and courage to go to school in North Carolina, go to Wall Street and kick butt and go to Stanford … sometimes my strength is also my downfall…thinking i can will away a disease or beat it…I can’t will this one away but I should learn to work with my limitations.

This may be one of the hardest blogs I have written to admit I am human, to admit I can’t plan it all.  To admit I had to rely on others to take care of me.  Matt, Liz, Stan – you are all winning – the jokes, the conversations, pretending not to see me shaking and the support…thank you for making me feel “normal”.

MARCH 22, 2011

Sisters, Dystonia, Love, Adoration, Learning to Accept

Today is my sister’s birthday.  As I chronicle and remember 5 years ago when I made the decision to have brain surgery, Suzie was a major factor.  We were the closest of the sisters…then Dystonia came in and attacked my body and then 3 years later literally destroyed my sister’s essence of who she was.  I tell my mom all the time you couldn’t have two more different children…I failed ballet class, Suzie held the fastest mile at age 10…Dystonia barely affected my laziness; Dystonia destroyed my sister’s hope of running a marathon.  Dystonia barely attacked my body; Dystonia ravaged Suzie’s.

Fast forward and Suzie opted for DBS 8 years ago..at that point still unclear how crazy the surgery was or the risks…it was a last resort for my little suz; she needed some form of relief..botox, medicines, none of them worked and more and more her life was one of a wheelchair…she opted to go for it and take the risk, why not?  She was already living a life in a wheelchair, could it get any worse.  She paved the way for many others…she became a walking billboard for why everyone should do DBS..she changes her battery every year, she has had at least 3-5 brain surgeries but would tell you DBS saved her life….

Here we are 8 years later, she just changed her battery last week and is celebrating her birthday….I asked her last week to nominate for the Medtronic Global Heroes program and this was her reason why I should be a Global Hero…To Suzie, you are my hero and a hero to many others, I love you!

“Carrie has always been someone that I looked up to not just because she is my big sister, but for her courage and strength in facing adversity and putting a positive spin on life. I watched Carrie show symptoms of dystonia and wonder why this was happening to her. Never did I think that 3 years later I would follow in her footsteps.

I underwent DBS before she did because my symptoms were a lot worse than hers. After 3 years of trying to convince her that deep brain stimulation would change her life, she finally took that leap of faith with the support of her doctors, friends, and family. Within months of getting “turned on” she had set a goal that she wanted to run a marathon as she had always dreamed of doing, but never thought it would happen. Her first half-marathon she ran for herself and her second half-marathon she ran for me. That was her version of a full marathon for 2009.

Carrie has inspired me to train to run/walk in my first 5k in December 2011. She has inspired and touched many around the world. She is not only my hero, but a hero to many that she has never seen or met. Her blog has shown many that Dystonia doesn’t define a person, but it makes you the person that you are and strive to be. She has also shown that you can do anything you put your mind and heart to.”