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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...

Thursday, May 15, 2014

A special person intellectualizes everything...

I've been neglecting this blog because I haven't been able to think of my writing as authentic.  For a couple of years now, I have been giving people advice here about dystonia and coping mechanisms to help sufferers out through life.  Little did I know, I have a disorder much more complicated than dystonia. 

Coming out with this other diagnosis is my choice because I think people need to understand how complex it is and not be so quick to judge what they do not understand. Admittedly, I also still have much to learn.  I fooled teachers, social workers, psychiatrists, psychologists, doctors and even a brain surgeon.  I mean, I had a neuropsych exam in 2008 before having Deep Brain Stimulation.   I scored way above average except on areas that measured my ability to focus and concentrate.  The team of doctors chalked my results up to anxiety depression.  They were kind of... wrong.  So what's this mystery diagnosis?

I have Asperger's Syndrome.  I am an "Aspie".  Clinically, I am a "high functioning autistic".

"What?  But you look so normal!  You did will in school. You are married and have a job!"

The thing is, Aspies can do these things... just not the same way that neurotypicals do.  I did these things without a diagnosis and without help.  I wasn't in "special needs" classes, I didn't have an aid in school or a job coach to gain employment.  I just knew what society expected of me and did the best I could to conform to what I didn't understand.  "So what on Earth made you seek this diagnosis?" one might ask.

I always knew and felt there was something different about me that I couldn't put my finger on.  I would daydream, overthink things, and strive for unattainable perfection.  I hated conflict and would never stand up for myself when bullied in grade school.  I felt lonely, but at the same time did nothing to try and make friends.  I used to joke that I was born with the wrong hair color when I didn't understand jokes or took things too literally.  I had and still have some intense interests -- like, I know a LOT about The Beatles.  I also love piano. (Ben Folds is an intense interest right now).  And distance running is like a second religion to me.  Over the course of my life, I can think of 13 or 14 intense interests I've had, never more than two interests at a time.  My brain can't process too much information at once.

I attributed my lack of understanding concepts, slight trouble with reading comprehension and inability to maintain friendships due to medications used to treat my dystonia, like Klonopin.  I was and am just tired --  I was always too tired to make friends or go out.  I was too tired to contemplate graduate school work or to try advance in life.  As life was becoming more and more complicated, the more I just wanted to hide under a rock...  Instead, I truly believe God sent me a message just in time... right before I felt my life was about to fall apart... 

Around Christmas time this past year, Susan Boyle announced how relieved she was to be diagnosed with Asperger's Syndrome.  I thought, "Good for her! I have family and friends who are on the autism spectrum, so this is just great that she is raising awareness."  Then, Dan Aykroyd commended Ms. Boyle about a week later, because he too had Asperger's.  I thought, "Wait a minute, Dan Aykroyd?  He's normal..." Out of curiosity, I did an Internet search for the symptoms of Asperger's and found myself on WebMD.  I read a description of a disorder that sounded an awful lot like me.  I didn't know what to do.

Long story short, after a couple of months of "self-diagnosing" and taking online quizzes - all of which put me on the autism spectrum - I brought my findings to a psychologist.  She referred me to a specialist who performed tests and interviewed me.  

I am on the autism spectrum.  I am either a HF Autistic, person with Asperger's or an "Aspie".  I have many strengths, but also many challenges.  Without having a diagnosis or support, I did very well in both high school and college.  I captained my high school's cross country team and over the course of my life, have played five different instruments.  I landed a pretty good job and even bought my own home. 

I've been blessed with a very understanding and compassionate husband who already knew he was going to have challenges having a spouse with generalized dystonia.  There are good doses of frustration and anxiety from being a bit "off" and kind of feeling like I just don't fit in with almost anyone else.  I perceive the world in a way that only 2-3% of the population does.  And my social skills?  They need a lot of work... 

I have been going through the stages of grief since receiving the official diagnosis on March 19, 2014.  At first I was relieved, then crying, then angry, and now I'm just trying to move forward with both dystonia and Asperger's Syndrome!  I don't even know where to begin...

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.

Sunday, December 8, 2013


"I can run just as fast as I can to the middle of nowhere, to the middle of my frustrated fears and I swear, you're just like a pill instead of making me better you keep making me ill...."  

It's perhaps ironic that the song Just Like a Pill by P!nk was one of my favorite songs to run to during the winter of 2002/2003.  The upbeat tempo combined with the lyrics were just so awesome to run to.  I'm sure P!nk didn't intend for this to be a "running song", but for me, every time Just Like a Pill came on the radio that winter, I felt this rush of adrenaline and got this endorphin high that helped me push through my workouts despite below freezing conditions.  My running got better and better.  I set a few 5k personal records that winter. I reached two of my three goals for the Lockport Y-10 in February 2003 -- clinching my age group and finishing in the top 10 for all the women in Buffalo's toughest 10 mile race.

A month later, everything started to change.  My foot cramped up, my neck went into spasm, and my body started to tremor.  As I traveled from doctor to doctor, I realized no one knew what they were doing.  Just Like a Pill took on a whole new meaning, and it wasn't positive or upbeat.  No one was making me better.  Doctors were pushing pain medications that didn't work.  A neurologist put me on steroids and Betaseron for my "multiple sclerosis".  I got so sick from the treatments, and I felt like no one cared.

No one was making me feel better... everyone just kept making me ill... I wasn't crazy; I just had dystonia.  I was finally properly diagnosed in December 2004. But to this day, no one knows what dystonia is.  It's "m!ssundaztood".

Now, nearly 11 years later, I am still "m!ssundaztood".  I can't explain what's going on with my brain and my body and the brightest medical minds can only theorize and speculate each individual case as no two people with dystonia are alike.

Coincidentally, there is literally a pill that makes me ill.  Unfortunately, it is one of the only pills that helps my dystonia.  Klonopin slows down brain chemical activity.  Some side effects of Klonopin are sedation, dizziness, weakness, unsteadiness, depression, loss of orientation, headache, and sleep disturbances.  I have been on klonpoin for nearly 10 years and experience all of these symptoms along with grogginess and anger.  Here's a YouTube clip regarding Stevie Nicks' dependency on Klonopin, prescribed by her doctor.  She describes it as "more deadly than coke".

I'm not myself while on Klonopin.  I think I function about 60% cognitively in comparison to where I was when I was 20 years old.  I get so sleepy and lack creativity.  I'm "m!ssundaztood" by so many regardless of whether it's the dystonia, the drugs or a combination of both.

A couple of years ago I attended a New Years' party with a bunch of people from Checkers AC.  Most of them were my parents age or older.  I had trouble making it to midnight.  As the crowd dispersed for the evening, a number of people asked me, "Hey, are you coming to our 'resolution run' tomorrow morning?"  I laughed -- were they kidding?  I was beat -- weren't they?  Looking back, they were serious.  I was in bed the entire next morning.  A lot of those folks got a few hours of sleep after a night of drinking and partying, and then went out running the next morning.  I was only 28 years old.  Runners in their 70's at the party didn't get me...  I'm finally understanding that they can't.  Dystonia and the drugs like Klonopin rob you of the person who you are.

For the past three years, I've attended the Niagara University President's Ball with my husband and his department.  My husband facilitates everything for the people in attendance at our table.  It's his job.  The ball is held at the Seneca Niagara Casino and is a really great event.  I always try to be on my "A-Game", but by the time the dinner and speeches are over, I'm ready to call it a night.  I need to head to the hotel room and sleep. The folks at our table understandably want to make the most of the evening by having a few more drinks while heading to the casino. This includes the director of the department, who is in his late 50's and has MS. What do they think when the account manager's wife isn't feeling well?  Nate and I retreat to our hotel room.  Nate receives text messages from concerned colleagues, "I hope Nicole feels better."  It's like I put a damper on the evening every year. I hate what I do to people... but at the same time it's not my fault.  

The anxiety depression that dystonia and perhaps klonopin cause is the most difficult thing to deal with.  I know there's an intelligent, energetic person inside me, but that person has been dormant for years now.  I wish that person would come back to be the person who isn't so difficult to understand... the person who isn't "m!ssundaztood".  Eight years ago I ran into an old high school classmate who did not recognize me at all.  After jogging his memory a bit, he said, "I remember you!  You were a runner; I remember you were really vibrant."  Yes... vibrant... that was me a long time ago now.  What I would give to have that version of myself back.         

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.