Dystonia

Winning! Setbacks! Limitations

So this weekend I declared Snow Weekend in Palo Alto…a weekend on the couch watching movies.  The irony is it mentally hurts me more to sit on the couch than it does to run and physically do damage to my body.  Those two half marathons wrecked my body, I can admit that today sitting from my couch.  But from of all this I learned, I am have limitations, honor them don’t fight them.  For two weeks, I felt like a hero. Like I took Dystonia head on and showed it who was winner…But then last week when my body realized it was all over and my body could be my body again Dystonia took over and showed me who was going to take control of last week.  So things are a little shakey, a little unbalanced, I even broke out the cane yesterday (for if anyone that knows me is a hard thing to do).  But I am optimistic this too will pass and I am confident this could happen again but not under my stupidity.  I am smarter now, I recognize my limitations and acknowledge the setbacks.  

Just like with the marathon, a friend asked would you do this again.  And I have to say yes.  I raised thousands of dollars to build awareness, I made myself happy, I made others really proud,  

So I am still working on what my next chapter of my blog will be because I have gotten several emails to not stop.  That my blog helps us others work harder, be better, so I had never thought growing up with Dystonia those words have been used to describe me, but here we are so many years later and that’s how I am being described – an inspiration.  I am humbled by everyone that has said that to me,…and despite my retirement of half marathons, I am sure I can be inspirational in different ways once this terminator gets her tuneup in a week! 

It doesn’t get old looking at this smile…or remembering to take my shoes off because i was in so much pain, but for everyone that I have ever met with Dystonia, you helped put this smile on my face!

48 hours left..

The Finish line really is a finish line this time around!  I have been somewhat melancholy today and reflecting about myself through this blog…I read about many ups and downs and as I start writing about the end.  I have to say I am truly proud of myself..

I was given a miracle and I used that to raise awareness.  I would estimate in the course of my running I have raised over $10,000 with the help of many many friends and generous donors.  I have inspired…I never knew I had that skill..I have inspired handicapped kids, DBS successors and just plain old normal people!  I inspire people when they want to give up at mile 3 that they can do 2 more miles, I inspired a friend that never wanted to do a marathon just qualify for the Boston Marathon and finally, I have inspired myself.  I have seen myself never give up when most people would, I have seen myself say I can never run 7 miles without stopping, and now can run that effortlessly.  

As in life though, all good things come to an end…and I am struggling how to end this journey…how to manage my body in the next 48 hours to calm down, relax and enjoy the end…My nerves and ending something I love is not a good thing for my body…so I am going to try and relax tomorrow…remember the journey and try and know this is all for the best…No need to gamble with the miracle I have been given…until tomorrow whenI write my post for my LAST HALF MARATHON….

Endings…Breaking Up…End of an Era

Barely touching my “eighth birthday” I have decided to stop running half marathons…and I have to tell you all, I feel so mixed about the decision.  Yes, I may have a little tremor but that’ll go away, it always does or will it?? …At the request of my friend I started reading my blog from the beginning.  When I started this little blog, I never ever thought it would last this long, be read so much or touched so many lives.  However, as I read it last night several themes emerged – how much I enjoy working for the medal and how many days after I inevitably blog about the little tremors.  Yet, I always forget about the bad days right after and then I sign up for the next race.

So I’ll be honest this decision sucks.  I am grumpy.  I cried at the gym today knowing this will be my last half marathon.  I feel like I am breaking up with myself.  I feel like I always define piece of myself by training and running these half marathons. When I was once told I don’t take care of myself, I never understood what that meant – I mean I get haircuts, I hide my greys, I work out; what do you mean I don’t take care of myself?  I finally understood earlier this year and then again last night and even today as I gear up to race again…half marathons exhaust me…I was literally falling asleep at 6:30pm tonight…My body is tired…it takes everything out of me to do them…it takes weeks to recover….I am guaranteed a huge adjustment in two weeks…So I get it now – taking care of myself means acknowledging the Dystonia and remembering that the DBS is a gift… A gift I need to take care of…

So am I smiling today? NO

…Am I sad, YES!  

But I know that this is the right thing to do….it’s just hard seeing the end so so close…and even though it doesn’t mean I will stop running, piece of me is going away…I will never say I am training for another half marathon again….I will run 10Ks (no one trains for a 10K :))…I’ll start riding my bike, swim, maybe take skiing lessons next winter or start paddleboarding…who knows what’s next?  But I do know the end is in about 72 hours away and for me endings are hard..really really hard…So I promised myself on Sunday I won’t cry but I will smile celebrating the end of an amazing race – 1 marathon, 1 tough mudder, 5 half marathons and many many 10Ks…I have done what many take for granted…done what many able bodied people don’t even attempt to do…and I have to say I have been very very lucky to have done so much…So tomorrow, I promise to turn my frown upside down!

Thats what friends are for…

The people that always had faith in me…always knew I wouldn’t finish last!  Many thanks to the people who helped me in every race.  They all knew when I was in pain when I questioned my own strength and always looked at me and said, you are going to finish this, some a lot more nicer than others 🙂  …  and always wiped a tear off my face when I crossed that finish line…Every finish line reminds me back to the day on April 6^th, 2006 when I saw my hair slowly drop to the floor and just kept on telling myself someday you will cross a finish line…So most times when I cry at that line it’s tears of joy not pain….tears that remind me I made one of the best decisions, tears that remind me how lucky I am, tears that remind me how strong I was when I was having two holes drilled in my head that I somehow knew the best was yet to come…

My retirement would not happen without a running career… and there are many people who have helped me get where I am today…

Heather, I always call you my angel.  I told no one where I was having surgery and somehow you showed up at Mt. Sinai right when I got out of surgery.  You took me for my very first walk around Central Park and you ran my very first 10K with me!  But it  But it didn’t stop there…You ran the Chicago half with me, the San Diego half and my very first Tri.  I really have to say…you like punishment!  All kidding aside, thank you!  You have inspired me every step of the way and your words of encouragement truly get me across the line all the time!

Liz, thank you for all of our runs on the WestSide Highway and then my first Half Marathon in Nashville…Then in between Tough Mudder and some how you decided you would do the Chicago Marathon with me, despite having issues with your foot.  But you are such a loyal friend you weren’t going to miss out!  You were there for me that morning and you said to me,  you are going to finish this I know it…I did and I thank you, for those words stuck with me all along the way!

Carolyne– You are definitely one to have in any race…You don’t let me give up, you do the opposite you yell at me like you are my drill captain…and I wish I could take you seriously but I know it’s all in love!  But the highlight of running with you was on New Year’s Eve when I was pretty sure I broke my foot at Mile 2, you decided to sing Runaway by Kanye – Accapella!  No one can sing and run like you!

Jeff – Thanks for the most amazing gift ever!  The Siu Bolts!  Those shoes will forever live in my heart!

Jyoti– Thank you for running the midnight run with Coach and I!  You left the baby at home and it was so fun to have my oldest and dearest friend run with me!  You cracked me up all the way when Carolyne had to take a break when she stopped singing and you took up the entertainment!  So happy to have had you run with me!

Matt- Thank you for being patient with me!  You helped me realize that I can RUN without walking.  You made me realize it wasn’t the Dystonia why I couldn’t run 2 miles without stopping, it was just my laziness!  Thank you for also teaching me that I will NEVER coming last, so stop saying it!

There are countless people I can thank…but these people endured my crazy attitude and helped me along the way to the finish line!

Thanks to all of you for my pre-race morning grumpiness, my fights, my rants that I am going to finish last and looking at me at mile 3 and saying – look at you, you got this!  None of you ever mentioned Dystonia on these long runs, instead you all said Terminator, Vicki, Siu Butt – you are an athlete!  So yes, I have this, I have had more than I ever dream of, but we are only as good as those that support us….So thank all of you for being on such an epic journey one which was never one in my mind, one that I never even dreamed could happen.  I hope you enjoyed the ride on the magic carpet as much as I did…because miracles do happen!

Countdown continues..Thank you to a special guy in my life!

Today’s blog is dedicated to someone who always has been able to make me smile even at the saddest moments…Dr.T has been a believer in me and has always been supporting me in my choices.  He tried for years to get me to pursue DBS and I refused..Dr.T gave tried to give me medicine and I said with an attitude, “absolutely not, I have a Stanford MBA and will not fall asleep in meetings” and he smiled.  Dr. T never stopped believing in me and the day I walked into his office and can I do brain surgery in two weeks, again he smiled.  Dr. T has always let me come to my own conclusions, never questioned me when I said to him I just don’t feel right…he always responded then something must be wrong.  Dr. T has been so amazing on this journey with me, I owe you so much…there is not enough money in the world to repay you! Dr.T we will run a race together even if it’s just a 10K.  Dr. T thank you so much for believing in me and helping me always get to the right decisions…and always fitting me in, because I like to remind you that I really never want to see you 🙂

I also want to thank every doctor or nurse who have helped me along the way…thanks to Joan, Dr. Malhado Chang, Dr. Alterman, Tyler, my Chicago team, Irene and Bob two of the world’s best anesthesiologists…and everyone along the way. There is not one nurse I can’t thank for taking care of me in post op…There is not one person that doesn’t laugh at my jokes as they wheel me off and there is never anyone when I hop on operating table that gets upset when I ask to go to the bathroom (happens every time) just as I am about to go to sleep.  I know this journey will continue with on going battery changes and potentially broken wires…so I owe everyone that touches me on those surgical days a big thanks!  you always make my day…And those who know me too well.,.surgery days are when I am my calmest…when I know I have to surrender to the people that know best!  This picture and this smile sums it up best…Thank you to all the medical staff that show me love and attention on days when I am most scared!  This run would never happen without each and everyone of you!

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…

http://dystonia.donorshops.com/product/sanfranhalfmarathon/runcarrierun.php

 

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!