Month: July 2011

Running for Dystonia.  Running with Dystonia.

I am beyond excited to start training for the marathon (even though I am only planning to do about 13-15 miles).  For the first week in a long time, I feel great.  Its been awhile  quite frankly that I have felt this great…since last summer I sustained 2 stress fractures, a broken foot and some minor battery issues.  Last Saturday marks my come back.  I am running again, doing my pilates and getting my strength training in as well.   I learned a lesson from the last year.  I have limitations and instead of ignoring them, I am working within the parameters of my Dystonia. I run. I run/walk.  I pace at 13 minutes.  I have 4 miles to run tomorrow.  I will do my tempo drills.  I will do it at my pace.

Last new year’s my friend Carolyne said to me I had no idea how hard it is for you to run.  I said it is, running for me isn’t about floating in the air and becoming one with the road…it is about thinking about every step and reminding myself to make sure my right foot does invert on the landing.    But it is also about thinking about every child that is in a wheelchair and that can’t run.  I am happy to spread the word about Dystonia through my running.  I would love a child, teenage or young adult to read this website and be inspired to lace up and walk or run or whatever get on a spin bike and ride….It is not about 26.2, it is not about winning, it is about doing your personal best.

New Year’s Eve, I felt bad Carolyne who paces sub 9 was running with me at 12+ pace and I kept on saying to her “I am sorry”….I have left that guilt in 2010…There is nothing to be sorry about; quite the opposite…She looked at me and said it is my honor to run with you my friend.  My friends are my source of energy and who make me want to get across that finish line…Be inspired, take your friend’s hand, and do the best you can do!

And it Begins…and it begins with me!

I woke up this morning to emails from friends and family who all watched the clip from Living Healthy Chicago and the words that kept on repeating in the emails were inspiration, motivation, hope.  I decided today that I am going to run as much or as little as I can of the Chicago Marathon. My goal is to do the first 5 miles and the last 5 miles to run with my best friend Liz who is running for Dystance for Dystonia with me.  Liz has seen it all: the ups, the downs, the limps, the brain surgery, the finish lines, the scars, all of it.  I am truly honored she will be running this with me to raise money for a cure.

Today, I started running – I ran about 3 miles and loved every minute of it.  When I needed to stop, I stopped.  Running with Dystonia is not about beating PRs or timing myself; running with dystonia is about sharing the awareness of the disease…letting others know that Dystonia is not a death sentence and most of all letting others be inspired to get up lace their shoes and do what is your own personal goal.

For me 10 seems reasonable.  Maybe even 13 miles…But its not about the distance or the time, it is about the run and the journey of getting there.  I have limitations, I acknowledge that; but I also love the ability of inspiring!

Please support me in raising funds for the Dystonia Medical Research Foundation!

http://www.rsvpbook.com/event.php?460916

Here is the clip from my interview on TV…

http://www.cltv.com/videobeta/5ccead6f-6399-4492-afa2-423a3cb24385/Health/Dystonia-Profile

I wish I could make it a little fancier or a little better but my code writing isn’t great!  This is one of the best things I have ever done on my journey with Dystonia.  Learn to be open, learn to accept that Dystonia is a part of you and love yourself for the journey that you are on….no matter how hard some days are, there are more days that are even better!

Its been a while since I have blogged but was waiting for my clip on Living Healthy Chicago to air and it was on TV this morning.  It was all about my life with Dystonia.  It was amazing telling my story; telling the TV community about my life with Dystonia….that’s never happened.  The plight of not feeling attractive, not dating, yet focusing on what I have – my brain and that was all I had.  My intelligence, my drive to be successful.  Seeing the clip made me understand my resistance to DBS, my legs were taken away from me  at 11 how could I risk my brain being taken away from me as well…None of this ever dawned on me till today.  Life changes, daily, you never know what each day brings and it became apparent in today’s clip that my right leg drags a little these days…but that’s okay.  I may just have to run a little slower now, but I still run for the 300,000 of us that life with Dystonia everyday…. smile…be grateful for all your friends and family that love and support you in your daily battle with Dystonia….Thanks to everyone for loving and supporting my in my crazy endeavors, I finally told my story on TV!

Clip to come soon…