We Are Alive, We Are Strong: Pedal for a Purpose 2011 Recap

Here we are, three days post P4P2011. I want to start off by saying that this is my third time trying to sit down and write this recap. I haven’t been able to quite find the right words to fully capture everything I’d like to share with all of you, so let’s hope this time I can get it all down…

We all knew this year was going to be big. Not only because the even gets bigger every year (physically and emotionally), but also because the cause was going to touch many of us on a much deeper level. The event was to benefit the CT chapter of the MS Society/Team Jenifer. I talked a little bit about Pedal and about Jen, who the event honored, in a previous post, but I have to say something again, because Jen’s strength, determination, and all around awesomeness simply blew me away again on Sunday.

Leading up to the event, I was nothing short of extremely excited. I have, for the past 4 years, felt like P4P was my Christmas not on Christmas. It is the day I most look forward to on the calendar.  There is just something amazing about being able to take the one thing you are most passionate about and use it to do something good. That is exactly what P4P is for me. However, I’d be lying if I said I wasn’t nervous as well. Other than the Monday before, the last time I’d been spinning (due to class schedules and lack of rides) was probably in January.  I was riding three hours and wasn’t sure how my body, or my mind for that matter were going to fare.  All that fear and anxiety immediately vanished upon entering the gym though. Jen was the first instructor of the day, and the first instructor for my 3 rides. There was something so powerful in those first 50 minutes. Dare I say more powerful than any of the other 5 hours, with the exception of maybe the group ride at the end with all 5 instructors. I honestly felt like the hour went by so fast, because the only thought in my head (after the initial “OMG. Can’t breathe. So. Out. Of. Shape.”), was how I was here, spinning with someone I look up to so much. A woman who I have found so many similarities with. A women who refuses to let a diagnostic label define her.  There were a few moments when I really doubted my ability to finish out the hour, but all I had to do was catch Jen’s eye **first tears of the day** or look at the banner behind the stage and that was enough.

The banner read:

Behind every success is effort,
Behind every effort is passion,
Behind every passion is someone,
With the courage to try.

The energy in the room was on fire all day. There was nothing stopping anyone from doing their part to kick some MS butt. I had a two hour break to enjoy the environment and take LOTS of pictures! The instructors, the riders, and the music all really spoke to this amazing cause during every hour.  The second hour I rode was taught by my cousin. Which always proves to be challenging both physically and mentally (she likes to pick songs that make me cry).  I knew that I had to save some energy during this ride because I only had an hour in between to rest before my last ride, but all bets were off when it was time to sprint and the song was Pink’s F*ckin’ Perfect. Gets me every time. The sprints were on the chorus (please look the song up if you’ve never heard it) and I had no choice, but to go all out. The song means a lot to me, for a lot of different reasons that aren’t the point of this post, but it also meant a lot to combine this song with spinning–the one thing in my life that makes me feel absolutely perfect. At the end of one of the sprints, I looked over and two of the instructors were mouthing the words to me. It all comes together. **Second tears of the day**

The third hour I rode, also the final hour, is always the most moving for me. All of the instructors get up on stage together and “team teach” the final ride.  It is also, without a doubt, the hardest ride because each instructor brings their own strength and determination, as well as their desire to push each other to the absolute limit! 🙂  This year was no different, but the last ride had a little something special about it for me this year. As I looked up to each one of those women, figuratively and literally, I was reminded of what true friendship is and reminded of what it means when you care so deeply for a person, that you will be there to hold their hand through everything. **third tears of the day**

What more can I say really? Other than the day was absolutely amazing, start to finish. This was the 4th year for the event and, by all standards, our best one yet! In the end, we raised over $11,000 to FIGHT MS!!…and had countless more memories!!

It’s funny the way life works. The people you meet, the things you do, the moments that forever stay etched in your heart. I was reminded of something at P4P this year that I often forget; or at least I forget lately. I can’t let my life be defined for me. By a person, by an event, and most definitely not by a diagnosis. No one knows what tomorrow will bring. No one. So why waste precious moments letting your life be defined, instead of defining it yourself?

Live each moment. Give everything you’ve got. Feel the fire inside of your soul. Own it. Hope. Never say never. And, most importantly, let everyone know how much they mean to you…I make sure to tell these 5 women every chance I get!

And for your viewing pleasure, I’m going to step out of my comfort zone for 23 seconds and post this video (in purple):

Thanks for sticking with me! 🙂

Photo Credits: Molly Carta, Karen Butler, Ron Kochman

If it makes you happy

…it can’t be that bad. Right?

This post has been on my mind for a while, though I don’t have the slightest idea where it’s going to end up. I’ve wanted to blog for weeks, but had papers due and sleep to take advantage of whenever I could.

Last weekend, my Dad and I went to see Elton John (for the 5th time together) at the DCU center is Worcester. It was a Christmas present for him, with the added bonus that he had to take me to get the present. 😉 He put on an amazing show, playing a mix of everything from the hits, to new music with special guest Leon Russell, and two of my favorites which he never plays live–Funeral for a Friend and Candle in the Wind! Did I mention how amazing it was??

While I was at the concert, I had one of those incredible, indescribable moments where you just find yourself thinking “wow, this is my life”. It was amazing to spend the time with my dad, something we don’t get to do very often due to our busy lives, and to be able to share this experience, for the 5th time in my 22 years, of seeing a true legend take the stage and play to a sold out crowd for 3 straight hours. He even jumped on the piano at one point and did a little handstand type thing on the keys! Such classic Elton! 🙂

Then he played “Don’t Let The Sun Go Down On Me”.

This is one of my favorite song/lyric combinations of all time.  As I was listening and singing along, the same line that always touches me hit my heart full force. “But these cuts I have, oh they need love, to help them heal.”

These words have always rang true for me. Yet, in that arena, in that moment, it reached a whole new level.  I have cuts. I have many physical cuts. Many relating, in some way or another, to Cerebral Palsy.  These cuts have had various meanings: surgeries, injections, falls…life.  Each of these cuts was made under the guise of  betterment. To make me stand better, walk better, function better. Be better. Because, according to some logic, being better=being happier. Right? Wrong. These cuts, well, they led to a lot of scars. Not the kind of scars you can see. The hidden scars. The invisible scars. The scars on the inside, on your heart. I never understood this logic, but there was one thing I did understand. The physical cuts will heal on their own.  All that will be left will be thin scars.  These physical scars, however, will always serve as a reminder of the emotional ones. In order to heal those, you need to love and feel love. And sometimes that love comes by doing something you love.

For me, that’s working on walking by myself. (I don’t know where this openness is coming from, but I’m just going to go with it before my brain tells my heart to stop).

The past few weeks have felt like a giant answered prayer for me.  I’ve been working on walking a lot in PT and looking up all sorts of information that I think could help. In it’s own way, this has been, and continues to be, a healing process for me. It might one half hour every week (sometimes less), but for that short amount of time, I am as happy as I can imagine myself being.  With each step, I feel love and I feel healing.

Walking used to be about normal.

It used to be about a cure.

It used to be about forgetting CP.

It used to be about proving so many people wrong. (Okay, I can’t lie. Ir’s still a little about that.)

Today? Today it’s about that feeling on the inside.

It’s about believing in where I am and who I am and my strength and determination to be going after something that is so not easy.

It’s about making every one of those scars on the outside mean something, and making the one’s on the inside slowly start to close.

It’s about knowing I can, and knowing that when I do, someone else out there will believe they can too.

It’s about love, and happiness, and healing.

Aimee Mullins and Her 12 Pairs of Legs

Because this made my day, and because everyone needs to hear this message:

“…It is no longer a conversation about overcoming deficiency. It’s a conversation about potential. I think that if we want to discover the full potential in our humanity, we need to celebrate those heartbreaking strengths and those glorious disabilities that we all have. It is our humanity and all the potential within it that makes us beautiful…”

CP Awareness Day

Hello again! Two posts in two days, who am I?! I couldn’t not write something today since it is Cerebral Palsy Awareness Day…

First, if you’re interested in reading some other awesome blogs about amazing children and adults with CP, please check out The Roll Call created by Sarah a few months ago.

Second, I wasn’t really sure what to write for today. I didn’t want to bore everyone with statistics because we can all look those up on our own. At the same time, I didn’t really have a specific “CP story” I felt compelled to share today in particular. So, this is what I came up with…

Cerebral Palsy, for me, has never meant much. Not to say it hasn’t affected me, clearly it has, but the term itself has never meant much. CP is what doctors call an “umbrella term”; it can be classified in different ways based on how it affects a person, but the term itself doesn’t really mean anything. At least not in the traditional way that most diagnoses do.  I’ve come to realize this more and more over the past few months.

I have no stories, no real words of wisdom tonight…but I will say that Cerebral Palsy for me has become defined by the things I do in spite of it and, in some ways, thanks to it. I have chosen to create my own definition to the best of my ability every morning when I wake up. Not the other way around.

Change the Conversation. Please, I’m Begging You…

Okay, so I have to be honest with you all. I first became aware of the Spread the Word to End the Word campaign (to remove the word “retard(ed)” from people’s everyday vocabulary) only one year ago when a friend of mine brought the campaign to our university.

While I wasn’t aware of the movement, I’ve always been a proponent of its message. I have always HATED the word, and HATED how casually it’s used. But, honestly, this hatred wasn’t because I have a disability; it was because I am a human being. And I believe any human being can, or should, understand why this word can be so damaging to so many people.

In fact, it wasn’t until today, reading Ellen’s post that I was hit–hard–by the reality this effects every single one of us. Physically disabled, intellectually disabled; the word is discriminating in itself, but the hurt caused by the use of this word does not discriminate. Basically, Ellen set up an alert on Twitter for anyone that used or tagged the word “retarded” in their posts. She then replied to each of them explaining how their use of the word could be hurtful and damaging to so many. Please take a minute to view her post. It will amaze you ( or at least I think it will) how many people just don’t get it and how many people are not afraid to make it clear that they don’t care. There were some poeple who, Ellen reported, thought and apologized, but it’s still shocking.

One user in particular really was my reality check. They replied back to Ellen’s message saying something about a “photo wrecker”. Ellen did not know what this meant, so she looked it up on Urban Dictionary. For the record, this was the first I’d heard of the term as well.

According to the site, a “photo wrecker” refers to: “a retarded or disabled person”.  The example they used was:

Question: “Who’s the photo wrecker you’re posing with?” Answer: “Oh, that’s Stephen Hawking.”

Absolutely disgusting. That was the point where I lost it today. I sat at my computer and sobbed. Realizing, for the first time, it effects all of us. I cried until I had nothing left, until I realized I could do something about it.

So here I am tonight. Asking each of you, from the bottom of my heart, to do what you can to Change the Conversation. Thank you.