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Tuesday, September 9, 2014

Epiphany on Klein Road

I have been wanting to write about this experience for some time now, but I somehow always seem to forget.  I have been working hard to rehabilitate my knee so I can potentially run again.  I'm realizing that this will happen, probably sooner rather than later. As I am going through this healing and rehab process, I'm constantly reminded of an experience I had on Klein Road when I was 18 years old.  Not only must I not forget it, but I need to share it.

I was home from SUNY Albany for Spring break in 2002.  It was unseasonably warm for March, and I'd left most all of my summer running clothes in my dorm room.  Not even some forgotten running clothes could keep me off the roads, though.  I headed from my parent's house, down the street, and made my way a couple of miles in a long-sleeved t-shirt and spandex.  Beads of sweat were pouring down my face, and I realized I was becoming fatigued.  As an Amherst Police car was about to pass me near Bassett Park, I thought about the "tough girl" cop I wanted to be. Proceeding down Klein Road, I was pushing my body to the limit and telling myself how I needed to work hard, fight, and run simply to win.  The sweat, fatigue and sheer determination would pay off in my training.  I was "good" and I knew it.

Then something happened...

It was if a whisper told me I had it all wrong.  "Nicole, look what you have."  I felt the beautiful late-afternoon sun on my face as my feet propelled me forward, gliding across the pavement.  With each breath I took, as my feet lightly touched the road, a multitude of new thoughts filled my head.   I was suddenly "flying".  I came to an awesome realization.  I wasn't on a "tough girl" training mission.  Rather, I was experiencing a gift that God gave to me; the gift of being able to enjoy something as simple as putting one foot in front of the other in the form of running.

From this "Lenten Run", as I like to call it, I learned so much.  My attitude changed.  It wasn't about my piddly 5k races and adding to my trophy shelf... it was about the simple, pure joy and ecstasy I was able to experience through the sweat, the fatigue, the sun, the air, and the beauty surrounding me in this little corner of the world as I ran.  This was something I'd never experienced before, but have experienced many times since.  I wondered how many others were out there, running, and experiencing the same feelings as me.

I didn't become a police officer, and I never reached the times I'd hoped to attain when I raced.  I never got to run in college and I've never even run a marathon... but through the ups and downs I've had in life -- especially with my health, when I run, I know it's where I'm meant to be.  When I run, He's there with me as I enjoy the beauty of the world in a very special way.  Encountering God as I move forward in this amazing journey I call the race of life, I feel blessed to have such an awesome running partner...

Monday, February 24, 2014

My Future as a Runner

This past November, I had a lateral release of my left kneecap so it could be realigned, along with the back of my patella smoothed out.  It was pretty "beat up" as my surgeon put it.

I've been in physical therapy for about a month, and making progress.  I don't walk down stairs like a little old lady anymore.  I can bike, walk and do some simple exercises to strengthen the muscles around my kneecap.

I saw my orthopedic surgeon today. "Running might be in your future, down the road."  To which I replied, "How far down the road?"  "Maybe next summer."  I couldn't believe it.  "Maybe?"

I just bought a cute t-shirt from Target that said, "Run Fast or Be Last" because it was only 7 dollars.  I should be happy that I'm walking okay at this point...  but running as a "maybe?"

I know I'm not God's gift to the sport, but running has certainly been a gift to me.  When I run, I feel better about myself, can think more clearly, and I just use it as my time to just relax and meditate.

I cannot imagine this not being part of my future, and I don't know how to deal with that.

Friday, October 11, 2013

I finally opened up...

...and then I just wouldn't shut up.  I was a quiet , soft-spoken girl who was afraid of her own shadow until about 26 years of age.  I stopped being afraid to talk to people around then.  The problem was, I just couldn't stop talking.  I still don't stop once I get started.  I've been told that it's enough to drive a saint to sin.

Not only have I been told directly, but I've had nonverbal cues and even completely lost my train of thought while trying to tell stories.  There's a supervisor in my office that I took the train in with for a while.  I'd be so excited to see him every morning that while I was yakking away, I neglected to take notice of the fact that he had a book open in front of him.  He'd always end up closing it, with the realization that he was not going to get any reading done as long as I was on the train with him.  He never complained about it, but it just hit me one day recently,  "He didn't want to talk. He wanted to read."

Today I broached the topic of how I talk too much with the new guy in our office.  I was probably on my third long-winded story with this guy since his start day on Tuesday.  I stopped in mid-sentence and laughed, telling him about the train incidents with his supervisor and how I talked to him too much as well.  His supervisor peeked his head out of his cube and said, "Now when I try to read on the subway, I just fall asleep."

I am well aware of this problem, and yet I still somehow am not conscious of the fact that I am doing it as it is happening.  Then I wonder why I don't have many close friends.  I'm nearly impossible to have a conversation with, though I do listen to people.  I do care.

I'm entering another long weekend.  My husband has to work again.  I don't want to feel sorry for myself, but I guess I kind of do.  I am not an easy person to be around, and I'm often living in a fantasy world designed in my head.  I need a reality check.  I need a new project and a reason to get out of bed tomorrow morning.  Right now I just don't have any idea what I'm supposed to be doing to keep myself occupied and happy.

Tuesday, October 8, 2013

It's not like the movie "13 going on 30"

It was almost ten years ago I saw the movie "13 Going On 30."  I drove my little sister and a bunch of her then middle school aged friends to the theater and decided to join them.  I was the "adult" of the group.  It's hard to believe how much time has passed.  For my 30th birthday, I had told my husband I wanted that movie on DVD.  He reminded me I already had it.... and also that he would never watch it with me.

I won't go through the whole story line of the film, but I think there are some good messages in this chick flick.  Appreciate who you are and what you have in life. Don't try to be something you're not.  Celebrate the person you are and keep a positive image of yourself, because it only gets tougher when you're older.  As adults, with women especially, it can be vicious.

I was a lot like the "young" Jennifer Garner in the movie - the 13-year-old.  I hated myself.  I didn't think I was smart.  I didn't think I was pretty.  I thought I was a terrible soccer player and a worthless musician. I focused too much on what Girls on the Run coaches call "Negative Self Talk."  Basically, putting myself down at every opportunity I had.  I actually believed these things I was telling myself.  The few close friends I had were generally guys, which girls thought was weird.  I didn't want to be me.  I wanted to be anyone but myself.

When I was 13, there was no Girls on the Run program.  In fact, GOTR has only grown in Buffalo over the past few years.  I jumped at the opportunity to be a coach at my old middle school in 2011, assuming it was just a running program.  I learned it was so much more than just running.  In fact, running was actually secondary.  GOTR is a curriculum-based program that covers a wide variety of topics including having a positive attitude, community service, bullying, eating disorders, peer pressure, stress, gossiping and so much more.  It was the kind of program I needed when I was young.

If you continually put yourself down from elementary school through college, you'll have problems. Life doesn't magically change when you get out in the real world.  You can't go back in time and change things.  Things aren't magically better when you're 30!  What you can do is start accepting and appreciating the life you were given.  It's really not all that bad... even while battling dystonia.

So obviously there's a point in my writing all this.  Only over the past few years have I been able to open up a little bit.  A woman I work with was baffled when I'd visit contractor facilities, walking with my head down, barely making eye contact with anyone, and being too afraid to speak.  I was afraid of sounding stupid.  At 24 years old, inside, I was still that timid little middle schooler who disliked the person she was, despite all the good things I had in my life.  At 25, I started dating my now husband, and he and his family certainly helped me to be able to open up.

That notwithstanding, I still face the same kinds of problems I did as a middle school student.  Unfortunately, I'm dealing with supposedly adult women.  I interact with women who think I should spend a certain amount of money on my clothes, hair, and make up.  Women who can't comprehend that I'd rather wear fashionable children's clothing than spend an arm and a leg on designer petite outfits with matching shoes to go along with them.  I deal with "grown ups" who don't fully understand what I go through with my health and how materialistic things have become much less important to my overall happiness.

I'm not really okay in life, but in a strange way, that's okay.  I am living, breathing proof that people can live a life of simplicity and still be happy, even while battling an incurable neurological disorder.  So, if you're reading this and are unhappy with your jewelry, your clothes, your car, or the brand new gadget that's already outdated, you're missing out on something in life.  Wake up and take a look around you!  The world can be a cruel and unfair place, but  you have the power to make not only yourself happy, but the world a happier place.  The decision is yours.  You only live once... make the most of the time you have on Earth and do something good with your life.  Make it your mission. Don't wait until your life slips away -- choose to be happy now!

Saturday, September 7, 2013


The subject of this entry is seemingly bland. In fact, if you retrieve the singular definition of the subject word from the dictionary, we'll really start to fall asleep.  So, let's start by doing just that! Here are a couple of definitions straight from

hand  noun
  1. the terminal, prehensile part of the upper limb in humans and other primates, consisting of the wrist, metacarpal area, fingers, and thumb
  2. the corresponding part of the forelimb in any of the higher vertebrates

Exciting stuff, right?  Way to state the obvious, Nicole! But... let's think a little deeper.

There is so much to feel down about these days.  War.  The economy.  Debt.  Stories about infidelity, greed, cruelty, illness, family falling-outs, jealousy.  Honestly, the list of all of the bad things in the world today is virtually infinite.

So, what does this have to do with hands?  Well, let's start here... what can we do with our hands?  How can we positively impact the lives of others through the use of our palms and a few digits?  Why is this so important?   How can we make the world a better place through our hands?

First and foremost, we need to reference & utilize item to the left in order to put our own hands to positive use.  I'm not a holly roller, really.  I don't press my religious views upon anyone.  However, I do believe when we put God first in our lives, leaving all of our worries, problems, hopes and dreams in His hands, we'll find peace. Really.  I know that's very hard to believe most of the time, but I really think it's true. Regardless of your religious denomination, trust God.  Everything is in His hands.

"Let go and let God? What's that got to do with our hands?"

Text from husband...
Our hands. The smallest and simplest actions and expressions of love can be demonstrated through the use of our hands.  Waving hello to someone.  Holding the hand of a loved one.  Giving the peace sign.  Picking up the phone and giving an old friend or family member you haven't spoken to in a while a call.  Texting someone to tell them you love them. These simplest of gestures can be expressed through the utilization of our hands, and they can all make a huge difference in someone's life, even if we don't realize it.

Fr. Francis presiding at our wedding
Laying of hands. In July 2010, my then fiance and I were in church.  Our wedding was about two months away.  I'd had probably the most successful Deep Brain Stimulation for dystonia that my doctors had ever seen about a year and a half prior.  My dystonia was basically gone.  I didn't consider myself a medical miracle, but rather extremely fortunate to have incredible doctors and a form of dystonia that responded so well to deep brain stimulation.  That day in church, my left foot cranked in at the ankle.  I was in a near panic.  As I hobbled to communion, tears started to stream down my face.  Why was this suddenly happening?  Would I be able to walk down the aisle in October?  I'd needed a few "tweaks" now and again for back pain, but I had not experienced anything like this since pre-DBS.  The priest, Fr. Francis, a really awesome member of the clergy at our church was presiding that day.  He's very contemporary for someone of his generation.  He was also the priest Nate and I had scheduled to preside at our wedding.  He kind of sounds like Ed Wynn -- you know -- the "I love to laugh" guy from Mary Poppins.  He noticed my tears.  This 70-something-year-old man cared so much about my pain, that he asked me and Nate to please stay after Mass so he could pray with us and anoint me with oil.  After church ended, he brought us back behind the altar and asked what was going on with my dystonia.  Fr. Francis called over to another priest, Fr. Paul, and asked if he would pray with us.  Fr. Paul was/is awesome; former Air Force. He actually recently left the priesthood, but he's still just such a cool guy.  They laid hands on me and prayed, anointing me with oil.  Fr. Paul motioned for Nate to come over and join them.  The sense of peace and comfort I felt was awesome beyond words.  The love and compassion demonstrated by these men was something I did not feel worthy of, yet they offered it anyway.  It really helped me, if not physically, at the very least emotionally.      

Letter from neurologist to me & hockey ticket
My neurologist's hands. Writing a letter and sending an expensive gift is not something that many doctors would do for their patients.  My neurologist, Dr. Guttuso, knew I loved hockey.  Sometimes at my appointments, we'd chat hockey more than actually have an appointment.  In 2008, there wasn't much he could do for me anymore except for refill my medications.  I needed DBS and I was terrified. All other options had been exhausted.  I was no longer even responding well to Botox.  Dr. Guttuso was so proud of me for pulling though that surgery -- he wrote me the nicest letter and along with it, sent a pair of his season tickets to a Sabres game.  Ryan Miller shutout the Toronto Maple Leafs 5-0 on February 4, 2009.  Thomas Vanek scored a hat trick.  I threw my hat in excitement, despite my shaved head from the DBS.  The hands of my neurologist wrote me a letter and mailed me tickets, yet another act of kindness demonstrated through the use of hands.

My hands. Having dystonia is no picnic.  Today has been an extremely bad day for me.  I'm
"In the end, only kindness matters..." ~ Jewel
chalking it up to the cooler, rainy weather.  My back and neck have a mind of their own and it is extremely painful and debilitating for me at the moment.  Still, I'm trying to remain optimistic.  There are people out there who have it so much worse than I do.  These are the people I need to help.  Others can benefit from my helping hands despite my disability.  I need to keep that in mind whenever I start to feel sorry for myself.  I can donate to the poor, volunteer, advocate for dystonia, and of course use my hands to type away in my blog.  With my head, my heart and my hands combined, I know I have so much to offer in my lifetime.  I just need to be open to everything it is that I am being called to do.

Monday, September 2, 2013

The Evolution of Human Interaction via Electronic Communication

During my junior year of high school, I had to write an essay about how technology was adversely impacting our society based on a reading assignment provided.  It was an in-class assignment for English 11 that I completely bombed.  I'd never minded spur of the moment writing assignments in high school.  I've always loved flooding paper with my thoughts and opinions, but in 1999, this was a difficult assignment for me to comprehend.  Now, in 2013, this would have been a simple essay. The way people interact with each other today has drastically changed since even I was in high school.  That really wasn't all that long ago.

Cell phones. iPads. Kindels. Blackberrys. iPhones. Facebook. Twitter. Texting. When I was in high school, when someone said "cell phone" you'd typically think of a cool portable phone. Generally speaking, only wealthy people owned them.  Cell phones were large with big antennas. So large, people carried them in bags.  They were cool... but you looked like kind of a dork while using them...

 Texting? That wasn't even a word.

I have a Verizon flip phone.  It's five years old, and doesn't even have a camera.  I only pay about 50 dollars a month for use.  I can slip it in my pocket, and people can pretty much reach me any time.  I hate texting.  In the time it takes people to text me something of a complex nature, it could have been communicated verbally in less than half that time. 

That notwithstanding, I still do think smartphones are kind of cool.  You can play games, access the internet, go on Facebook, Tweet your thoughts and communicate with the world in so many awesome ways.  Hell, you can even meet new people on your phone while sitting alone in your office at work!  Yeah, definitely cool.  But at what expense?

This form of communication is replacing the most important kind of human interaction- People talking to each other vis-a-vis and being fully aware of the importance of life as it exists around them.  Human beings have become walking zombies, not paying attention to both the beauty and the suffering of the world as they pay more attention to the smartphones out in front of them.  How many people do you see walking with their heads up on a busy street, smiling and making eye contact with others?  Shouldn't that be the norm?  

In my experience, I've found if you so much as dare say "good morning" to an individual with their phone out in front of them, it's considered rude.  How dare you intrude upon the personal affairs that are literally going on in the palm of another's hand?  Portable electronic communication is now seemingly far more important than human contact.  It's sad, really.  It's like, "Hi, I'm here. Can you maybe put your phone away so we can sit and have a conversation together? Or is the phone on the table more important than the fact that I'm here with you now?"  Really, this kind of thing happens to me.  I don't think I'm being rude or unreasonable in asking this of anyone.  I'm being realistic.

Smartphones also take away from being aware of your surroundings.  Paying attention to what's going on around you is important to being human.  I feel like people need to walk with their heads upright a little more and just see the world as around them.  Imagine the difference you could make in a person's life who might be hurting inside and expressing that through tears rolling down their cheeks?  I know from experience that a simple, "Are you okay?" from a complete stranger can mean so much.  A hug from a friend who sees pain in your eyes without your even having to say a word is just so special.  Now, you could bypass a friend in pain, or maybe someone who just needs a hug because you're too busy checking out what's going on with the rest of the world on Twitter.  Twitter doesn't make us human, acting human does.  Interpret that as you will. 

With all of that being said, I still love how small the wold has become with social networking.  I've been privileged to connect with so many awesome people through my blog, my old (and new) Facebook accounts, and Twitter.  If I'm important enough to connect with someone online, especially in a dystonia community, we'll meet.  If I'm not, then so be it.  But when I'm with you, please put your Smartphone away.

Last Friday I had the privilege of accompanying a new friend I met via my blog to Frontier Field in Rochester in order to promote a fundraising event - Toss for Dystonia.  If it weren't for Facebook, Blogger, and Dystonia BloggerMania, we probably would have crossed paths at social functions through work for years and never have had said a word to each other.  It ended up being that the world was just really small and dystonia was a commonality in our lives.  What I noticed at Frontier Field as I tried to help advertise, was something a bit awkward to me... people paying absolutely no attention to anything around them... heads down... with their smartphones in front of them.  How do you approach someone like that with information about a fundraising event?  It's like... you can't.  I couldn't.  I didn't.  We met all kinds of people, but for me, personally... these smartphone folks were the most unapproachable.

I'm not anti-technology. I can't forget how important Facebook was just a few years ago, when my now husband found me. I had not seen him since high school.  Despite the fact that we lived less than a mile from each other at the time, we had not seen each other in over ten years.  Thanks to Facebook, we were able to reconnect and become close friends, and eventually husband and wife.  After that, I'm not sure how useful I found Facebook. Other than for dystonia support, I didn't really use it. That's why I have only 28 friends on my new Facebook account.  I want to live a life apart from it.

I guess what I'm trying to say is that there should be a balance between technological communication and actually acting like a real human.  What that balance is, I'm not really sure... but I do know what it's not.

Sunday, August 25, 2013

Reflecting on Life and Appreciating Each Day

Oftentimes, I forget how good I have it.  It's easy to become jealous, bitter and simply angry about the hand I've been dealt.  Dwelling on my pain and disability and trying to blame someone or reverse it is a waste of time and energy.  This weekend I had a wake-up call that led me to realize how precious it is to be able to feel the warmth of the sun on my skin, a cool evening breeze, or enjoy looking up at the sky during an evening sunset.

Thursday afternoon, traffic was crazy.  I assumed it was because President Obama had been in Buffalo and that perhaps the traffic was still slow.  I had a 45 minute drive home that would normally only take 20 minutes.  I started dinner a bit later, timing it so it would be ready for my husband when he got home from work.  I got a phone call around twenty after six.  It was my husband.  "I had to get off the thruway.  There was an alert up and I saw traffic ahead at a complete standstill.  Fortunately, I got off in time, but it's going to take me a bit longer to get home.  I guess Obama wanted to go to Mighty Taco," he joked.

On Saturday, as we walked to get coffee together, Nate said to me, "Oh, by the way, I found out what that traffic was all about on Thursday."  "What was it?" I asked.  "A 12-year-old was riding his bike to football practice.  He rode out into the street as the turn signal went on.  A car driving into the intersection ran him over.  I mean, it was his fault... no drugs, alcohol, or cell phone use... and about 10 people helped roll the car off of him, but... it was too late.  It was just a terrible accident."  

I don't know what happened inside, but I just felt this overwhelming sadness.  Here I was, walking with my husband, breathing air, and enjoying the sunshine... and a child who had not yet even begun to live was killed.  Life was going on, and I knew parents, schoolmates and friends were grieving.  Who was I to ever complain about life when it's so fragile?  I later found out that my uncle had this young boy as a student at Hoover Middle School.  My uncle elaborated, "He was conscious and calling for help.  His leg was badly broken at the knee.  He was able to tell the police his name and address.  I'm guessing he just died from internal injuries.  He was a good kid... popular.  The start of this school year is going to be rough."         

I then thought about a 13-year-old girl named Erin who lived down the street from my parents.  A couple of years ago, she and two friends were playing on a school playground.  They had all just celebrated their 8th grade graduation the evening before.  Erin had a lead part in a dance recital the next day.  On their way home from the playground, the girls ran into the median of a busy street.  A car stopped to wave them on.  A woman driving a jeep didn't know why this car had suddenly stopped and quickly drove into the outside lane to avoid slamming into it.  Two of the girls were hit by the jeep.  Erin would not dance in that recital... she was killed.  The roadside memorial is still on the corner of my parent's street.  Again, just a terrible accident.

When I was 8 years old, there was a boy named Benjamin. He was a year younger than me and a student in the classroom next to mine.  He needed to have open heart surgery.  My mom explained to me, "Before the doctors put him to sleep, he told his mom and dad 'don't worry!'  But he was much sicker than the doctors thought.  He died while in surgery."  I remembered who he was back then, and can still picture his face today.  Even as an 8-year-old, I cried for him and I cried for his parents.  He was a little kid, consoling his parents before his passing.  It was just so sad.

In bringing this all together, I am 30-years-old.  I am sitting in my living room, typing on my laptop.  My husband is sitting across the room typing away on his.  It is a beautiful Sunday evening. Peeking through the window blinds, I can see the sun setting through a tree in our yard.  Beautiful.  I am alive.  I don't understand the big picture and why I am alive while innocent children have to die.  But what I do know is that I have control over what I do with whatever time I have left here, by how I treat people, by my actions and by trying to live each moment as if it were my last.