July 13, 2015

Return.  Sorry.  Tribe

I am so sorry that I have taken almost 6+ months off but we all need breaks every now and then.  I needed a break from running. I needed a break from blogging.  I needed to reflect. I needed to remember what Dystonia means to me.

Dystonia is here to stay. There is not a day that I don’t think, OMG it’s getting worse. OMG, I sneezed, I moved a wire.  But more importantly, daily, I remember gratitude.  I remember how incredibly lucky I am.  I remember in every workout class or every step on the treadmill that I am lucky.  I am thankful.  I have gotten smarter in my old age.  I have realized that practicing gratitude everyday is what’s important.  Every day is a gift, every day is my hallmark holiday and that holiday is gratitude.

I am also thankful for my tribe.  These 2 –


These 2 are part of my initial tribe, they meant so much to me 30 years ago and they mean even more today.   I am thankful for these two more than ever in this stage of life.  They both constantly remind me that I am an amazing person and more importantly they are amazing to me…these brothers, make me laugh on good days and bad days and I am sitting here today thankful.  But what is most significant about these two, is that there was never a day in 30 years of friendship that they told me that I couldn’t do something or said they felt sorry for me.  These two are in my tribe, these two have seen me for who I am not what disease I have.  Today, I am thankful.

January 23, 2015

“You are right where you should be”

Today in my afternoon run, I decided after 2 miles I didn’t want to run back, I wanted to walk.  Sometimes in all the training I do, I forget to stop running and just stop and realize this is exactly where I should be.  Slow it down, I told myself, these moments are too beautiful to run by.


We all need to take the time to reflect on where we have been and where we are going.  Our past isn’t meant to be a reflection of our future, our past is meant to be a stepping stone to make us stronger for our future.  After many years of denying that I had a disease, that I am disabled, I finally realize I am right where I should be, where I need to be.  I can’t imagine a world of not appreciating every run for what it is, I can’t imagine my life without this blog,  On this journey called life, we can’t control the onset of a disease, the loss of a loved one or whatever is thrown in our path but I am realizing instead of ruining the beauty of today with tomorrow’s worry just remember you are right where you need to be.  Instead of worrying about my DBS or a battery replacement, I just enjoy everyday for what it brings, change is inevitable, how I handle that change is up to me.

January 18th, 2015


Did my instructor just call me an athlete? But she knows I have Dystonia, she knows I can’t do it all…hell yeah she called me an athlete!

I am an athlete. I lace up about 7-9x a week and do something good for myself.  I go to bootcamp, I go spinning, I go running, I do Pilates, I go boxing, I go to yoga.  My friends are alway saying – how do you do it? How are you so disciplined? Here is the secret – for 20 years I couldn’t.  I always remember on the operating table saying to myself if this thing works, I am going to be called an athlete one day, I am going to be able to jog, I am going to be able to spin..I am not going to take this science for granted.  And I never did.  The big realization I have had on this journey is when you have an opportunity, a miracle, a gift whatever it is, cherish it, bask in the glow of the gift, BUT don’t take it for granted.

Remember how in my last post I said I wake up scared everyday thinking about bootcamp.  The BIG secret is I am scared everyday thinking about losing this miracle.  I am not taking a day for granted.  I am not taking life for granted.  I am not taking my life for granted every again. I am not perfect though, I fall off this philosophy every now and then but you know what, that’s okay.  Everyone has their bad days, but I decided in 2015 I am going to make someone smile everyday, because their smile would light me up and remind me everyday is a miracle.

To smiling once a day and remembering how lucky we are Dystonia or not!

January 4, 2015

“Do Something that takes you out of your comfort zone” – Erica, Barry’s Instructor (1/4/2015)

Well I do something that scares me everyday, takes me out of my comfort zone yet makes me realize I am lucky, I am grateful.  The crew below scares me every day…Everyday I wake up with doubt, can I do this? can I really do bootcamp? but in 2014 everyone in the picture below made me realize despite Dystonia, despite having a neurological disease I can run on that treadmill.

Everyday for 25 minutes a day I am scared my shaky legs will fail me and that I will fall off everyday.  Everyday I am nervous I will lunge and fall over, yet everyday when I look up and I see one of the instructors below glance at me with a smile or say go carrie, I realize I did it – I overcame my fear.  So 2015 is all about living outside my comfort zone, having the right people on my team and realizing in this 9th year of being able to walk, I am still the luckiest person I know.  Everyday going to Barry’s, going for a run, or just working out is a miracle, so that’s my motivation, accepting my miracle, getting scared and knowing if I fall, I can get back up and get on the treadmill.

Be scared everyday.  Dystonia is scary, having a disease is scary, realizing that I should be in a wheelchair everyday scares me, so today when I teared up as Erica said do something out of your comfort zone, I realize I do every day and for that I am certain.  To being present in the moment, appreciating every hill I climb because I can always say I went out there and climbed that hill.  I will never know what tomorrow brings today, so do something scary every day and be grateful you had the chance to do it.


Thanks Barry’s Crew – Love you!

November 3, 2014

Inspired. Awe. Giddy

This weekend I had the pleasure to fly to NYC to cheer on two of my friends while they ran the NYC marathon.  I stood in the blistering cold for 5 hours and I have to say the energy of the runners, the love of the families out there cheering made me warm – my toes were numb but my heart was so warm.  I was touched by the person who ran with no legs, the runners who were blind and those that didn’t have any legs.  Their strength and tenacity reminded me that each of us have our own strength –  it is how we decide to use it that separates the heroes and the average person.

I screamed for 5 hours, cheering every Jennifer, Bob, Matt and Melissa.  There were the runners that smiled everytime they heard their name and you can tell it were these moments when they realized all their training was worth it.  Every charity runner made me so proud from the Dystonia runners, to Team Fox and all the other charity runners out there – your bibs helped spread awareness.  I am still giddy high five-ing all those runners, just like those random strangers have done for me in the past.  I realized in that moment that helping others, showing my love for complete strangers when they least expect it makes me feel special.

The energy of that race is infectious.  It truly is a NYC special, one that I may have to think about doing in 2015…2014 was a slow year with 2 surgeries but already thinking of throwing back on that Bib and continue to spread awareness for Dystonia.  Quite frankly, it isn’t the time that matters, it is the strength and the heart of the person to be courageous and make the disability be the wind at their back!

October 5, 2014

Surgery round 2

No it’s not from Dystonia, No it’s not related to the “thing” I have.  I just had shoulder reconstruction 2 weeks ago and it has been an interesting experience.  Everyone wants to think it has something to do with my Dystonia, I just had a progressed shoulder arthritis situation and had to get my shoulder reconstructed.  Physically, brain surgery was easier – 1 day recovery, this surgery is about 18 weeks going to PT 2x a week.  I woke up very sad because after 8 years of freedom, I am confined to an arm sling and told what I can’t do….I couldn’t shake the feeling I knew this feeling before and I remembered it reminded me when I was confined to my ankle brace and couldn’t walk.

This one is different though…I am not waiting for a miracle cure.  I am going to work hard to get this shoulder rehabbed, I am going to take care of it, I am going to not lift more than 5 lbs…I am following all directions from the doctor!  I am asking for help, I am sitting in handicapped seating and am finally okay with it.  I am disabled and it is no different than having black hair, it’s just me!

This isn’t permanent this is just from being way to active and probably trying to cram 20 years of trying to be physical into 8 years! So I definitely won’t be running any races for the rest of the year per dr.’s orders but I am sure there are going to be some in 2015!  My lesson here is that Dystonia has nothing to do with the rest of my body, areas will hurt and those need care too!

August 5, 2014

28 years later…

Tonight marks a significant night in my Dystonia journey.  I went to a dystonia support group, you heard it my secret is out!  Not that much to my surprise I teared up a little as I said my intro…My name is Carrie and I have had Dystonia for 28 years…that’s right 28 and not only that, 1 brain surgery, 4 battery changes, 1 wire replacement, 1 marathon and 5 half marathons later, I am here to share my story, to change those “I can’ts” to the I can!  So again to my surprise I had all these Dystonia patients come up to me and say you are amazing, your spirit is so infectious as you smile about this disease and I said I choose to use myself as a billboard of positivity and hope.  

So tonight was a reality check, when times get tough, I can go for a RUN, when times get real tough I can go for a LONG RUN!  I am one of the lucky ones as the surgeon at the forum said you are one of those star cases!  I am so thankful and grateful for everything I have and I am so glad I can use my words to create a powerful message.

ps #funfact – botox was created for Dystonia patients first, then they realized it can take away wrinkles!