April 4, 2011 – Happy 5 year!

I remember.  Thank you. I will never forget. 5 years young.

Five years ago today, I woke up and took my last shower for a while..brushed my hair for a really long time and put on my favorite pair of pink juicy couture sweats.  I never freaked out, I never cried…quite frankly, I was too tired to even think about it.  I have never been a morning person and just wanted to get to the hospital already.

I remember thinking to myself, this isn’t like Grey’s Anatomy.  I got wheeled up to the eighth floor and was parked in a nondescript hallway.  My mom and I said goodbye and the barber’s clippers came out.  The hair started to fall out.  I was bald.  My journey began.  My heart rate didn’t rise.  My anxiety didn’t rise.  I knew I was doing the right thing.  I remained calm.

I remember the doctor saying she is so calm, she needs no additional drugs just the Novacaine.

I remember the halo.  I remember the screws tightening in my head.

I remember that awful MRI.  I remember the last 10 minutes and turning red from an allergic reaction.  I remember freaking out, I remember Dr. Irene cracking jokes and calming me down.

I remember seeing my mom and Ilana, I remember seeing the looks in their eyes and I told them “relax, everything is going to be okay”.

I remember the drill.

I remember the noise.

I remember the smell when the drill was going through my skull.

I remember thinking this is weird, my brain has no pain.

I remember being funny and making jokes in the operating room.

I remember hearing the noise in my brain when the wires got dropped in.  I remember thinking when Dr. Alterman hit the “spot” – wow, my brain is having a party.

I remember when everyone in the Operating Room after five minutes of me not speaking, asking me, alarmingly, if I was okay and I remember saying, I have been speaking for 4 hours my jaw just hurts.

I remember when someone asked me if I wanted my lips swabbed with water and I responded that I would rather have a Grey Goose and club soda.

I remember when they turned me on and my right arm tremored, I freaked out and thought why did I just make things worse.  I remember Dr. Alterman saying it’s okay we are going to move the wire.

I remember feeling relief for 5 minutes when they turned me on again and thinking I did the right thing.

I remember them putting a little cap over the two holes in my head.  I remember Dr. Irene taking a pic and me smiling.

I remember the ICU.

I remember seeing my mom.

I remember seeing Gab, Liz, Jyoti, Ilana.

I remember waking up and seeing an angel – my friend Heather who somehow found out what hospital I was in since I told no one but my 4 best friends.

I remember having the worse headache I will ever have.

I remember crying all night for my mummy and the nurse sneaking her into the ICU at 6am.

I remember being in pain and thinking….

I will never forget….I remember everyday how lucky I am.  I remember with every step.

I want to thank every person who has ever supported me, family, friends old and new..Friends from all over the world.  Friends who celebrate April 4th, every year, because I will never forget.

To mom, dad and Suzie – thank you for always supporting me, no matter how crazy my ideas are.

To Dr. T, Joan, Dr. Alterman, Dr. Irene and all the other doctors who were there April 4, 2006 – Thank you!  I always told you I would wear the cutest pair of heels…

To my girls – Liz, Ilana, Gab, Jyoti – thank you!  You grew with me as the disease grew and even on April 3, 2006 refused to tell me that you saw a limp…you really are my foundation.  You all made me heal quickly through laughs, ben and jerry’s and macaroni and cheese!

Harsh, Lauren, Rigney – somehow you guys over the years have been a great source of support and comfort to me! Harsh – thank you for making runcarrierun.org become a source of inspiration for others!

GSB crew – you rock….spreadsheets and all!  And you finally found out, no I didn’t hurt my ankle, I have Dystonia.

To any person who has every raced with me – Heather, Liz, Carolyne, Jeff and everyone who has come out to watch – thank you!  I will forever cross any finish line as I have in the past to Journey’s – “don’t stop believing, because I never have!”

I want to the thank Heidi for going to pre-op with me round 2 when  I couldn’t even write my tremors were so bad…and being a patient friend and pretending that was  “normal”.

Today my Equinox crew supports me everyday as I train for my marathon – Jason, Coach, Drew, Julia, Dawn, Lois, Tonya, Julie, Allison, Jim, Jenn, and Kristen.  You all take care of me and always encourage me when I know you can see struggle on my face.  AJ and Mortie thank you for all your patience with me and to all the other trainers – thank you for helping me on the days when walking may be too much (even though you probably don’t know it)…thank you!  Drew, I especially thank you for teaching me that it is okay to have limitations and to work with what I have!

And to the Terminator, Bionic Oreo, Small Wonder, SiuBolt – I am proud of my wires, proud of my scars they are a part of me, they make me the person who I am.  9 years ago when I applied to Stanford and said I wanted to run a marathon…I celebrate that dream on this day. I remember that girl that could barely walk a block and will never forget her.   On April 4, 2006 a miracle happened and for that I celebrate!  (If you see me in tears today….those are tears of extreme joy!)

 

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3 responses to “April 4, 2011 – Happy 5 year!

  1. Hey carrie, my name is colin smith, im 16 years young residing in Jacksonville,Florida and i also have Dystonia learning how to deal with it all, im in gainesville as i typed this as a matter of fact, im here to do my pre-op stuff with all the appointments for 2 days and have decided to go through with the sugury, today i met Meredith and had to do all her bizzare tests with LOTS of jokes on the side and she told me about your site so i decided to check your story out on your website, and you have amazed me with such an incredible story and just being able to stride for more and continue life by moving forward is outstanding and very admirable to me, continue what your doing, keep running your life the way you want to instead of DYSTONIA running your life, HAPPY 5 YEAR by the way!!!

    • Colin
      I am Carrie’s younger sister and a patient with Dr Okun and Dr Foote and also Meredith. Meredith has helped me a lot during the last 8 months. Yes she has some bizzare tests, but they really do help her get an understanding of what you might need help with post surgery.
      I will tell you what I told Carrie. Deep Brain Stimulation is just the beginning to a long road ahead of you. Once you have the surgery done then comes the time for lots of patience. Finding the correct settings can happen very fast or it could take months. You are in good hands here at Shands and I wish you all the best as you begin your journey.
      Suzie

  2. Happy Anniversary Siu Bear! Thinking of you today and wishing you the very best.

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