All posts by Annie

Dear Cerebral Palsy, Thanks for Everything…

Annie now & then

Dear Cerebral Palsy,

Hey there, friend. I can’t believe It’s been 21 years. Starting from the days in the NICU, now in my third year of college and here you are, always sticking to my left side. Years of stretching, physical therapy, injections, leg casts, and braces, were all focused around helping improve the strength, flexibility and gait. But I would have never thought that having you with me physically would lead me on such an incredible path of self-actualization. I consider myself really lucky; not everyone comes to understand what place a chronic condition can hold in their lives. At 17, I felt shadowed by you. But now at 21, you make my life brighter! So I felt the need to say thanks… for everything.

Thank you for helping me understand my body, my challenges, and my personal goals. Without you, I would have never learned the values of compassion, courage and perseverance. CP is the one thing in my life that has been with me through every endeavor, and I truly believe that this is what has given such a deeper meaning to many of  life’s experiences. While I can only speak based from personal experiences, I do not consider you as a disability. Yes, I understand that Cerebral Palsy technically fits into this category, but for me it’s a stretch (no pun intended). I rarely need to take advantage of, let alone qualify for accommodations. And let’s get one thing straight…I am not “differently-abled” as some campaigns like to call it, and I definitely do not “suffer from Cerebral Palsy” When things don’t feel comfortable for my body, I adapt. And yes, I’m weary about asking for help. But I’ve learned to speak up for myself! No one knows my body better than I do! I’ve come to terms with the fact that I may be better off avoiding ice skates, that stilettos probably won’t find a place in my closet, and that I’m going to fall over cracks in the sidewalk every now and again. Patience is important. And of course, making make my entrance into the world 7 weeks early, I’ve never exactly been the patient type! Thanks for teaching me how to take life one day at a time.

Sure, I have days I wake up with my leg muscles so tight and fatigued that I’m convinced I’m an 81-year-old trapped in a 21 year old’s body. Adding any kind of cold weather or uneven terrain to that equation takes the discomfort to a whole other level. My condition will never change, but my symptoms often do! Everyone says it’s unhealthy to stretch to the point of pain, but just extending my legs out can be agonizing sometimes. And I’ll never forget my senior year of high school, having bags of ice wrapped around my leg daily because of the regular muscle spasms.  Senior year comes with so many expectations, but it felt as though my body was betraying me. As a teenager, I was guilty of letting a lot of negativity go to my head, and for a while, I couldn’t fathom the thought of having Cerebral Palsy for the rest of my life. Performing on my high school stage didn’t make any of this easier either. I often felt like my best wasn’t good enough, and I know a lot of those feelings stemmed from a deep place as a little girl. I crossed paths with more than one choreographer who have flat-out said that my C.P. got in the way of them being able to teach me. But the last time I checked, my leg doesn’t affect my ability to understand how hurtful words can be. Not everyone is going to be open-minded, and that’s okay. Thanks for allowing me to experience pain, criticism, and even rejection. I can’t control what people think about my  abilities, but I can control my attitude. In living with CP (or any chronic condition for that matter) perspective is key. I don’t want to look back on my life knowing I woke up every morning frustrated by my body. Every person is in control of how they feel, regardless of what life throws at them. It’s a choice. I’m glad I choose optimism.

Thank you for helping me realize how incredible my parents are. From day one, their unconditional love and encouragement has served as my saving grace. My mom, the woman who always reminded me that living with a big heart will take me farther than any physical ability. She devoted many hours to making sure I was able to complete my home program of Physical Therapy with incredible patience, even on the days where I would grumble and whine. My Dad, the guy who always reminded me to face my challenges with hustle and heart, and who comforted me through painful procedures, telling me to was okay to howl as doctors injected the back of my leg. Mom and Dad were the first to console me as I awoke from each of my five surgeries, and made sure chocolate milkshakes soon followed! Together, they have pushed to give me the best life possible, insisting nothing took precedence over getting my education, and making sure that I stayed on a mainstream track in school where I belonged. Decisions like these are ones that have helped me reach my full potential in life. From day one, they have taught me and given me more than any other two people on the planet, and I love them so very much.

Most of all, thank you for helping make my dreams come true. This May will mark two years since my tendon release surgery. To be honest, an operation didn’t phase me at all-I was excited! I will never forget the morning I stood up from my hospital bed and began my trek down the hall. With every step, it was as if all my doubts were disappearing behind me. It’s so hard to explain the joy I felt in that moment. My soul was happier than I ever knew it could be. I am incredibly thankful that my surgery became all I’ve ever wanted. The way I walk will never truly be perfect, but in a way, it has become perfect to me. To know the feeling of dream come true is indescribable and gave me the confidence to pursue other dreams as well. I didn’t think my surgery could be topped by anything, but when I got the news from Chicken Soup for the Soul that they were publishing my piece in their book, Think Possible, I was more excited than ever!! Being able to share my story with the world about being a seventeen year old performer with CP (and a major side of insecurity) was eye-opening and a real honor. Over the past few years, you have transformed from my biggest insecurity into my greatest gift. And I know that I am not alone. I  have had the ability to form instant bonds with people who know what it’s like to live with CP.  Together we’re unstoppable! I want to be a part of spreading hope that living with a chronic medical condition can, in fact, be a blessing in disguise.  My dear CP, If I know one thing for sure, it’s that I wouldn’t be the  person I am today without you…literally always on my side.

Much Love,

Annie

To Surgery…And Beyond!

Hi TeenCP!! I’m so excited to be back and writing about my latest excitement. I am now finishing up the final months of my freshman year of college and have been introduced to the medical opportunity I’ve always dreamed of!

All my life, I was told that I had Spastic Monoplegia (a.k.a  tight muscles only in my left leg, complete with a limp, and balance problems that were given to me shortly after I was born) But a few weeks ago when I visited with a new surgeon, I was given a new look into really how my leg muscles were moving. It has been my goal in the past few years to reach my full potential physically and now, I was finally getting what I saw as the chance of a lifetime. Back in January, I did a “Gait Analysis” at a special lab in New York City. From this, the doctor would be able to see how exactly my muscles move and then decide what course of action to take so I can walk as well as possible That day was actually pretty cool-therapists covered my entire body in little ball-shaped sensors and used 3-D Motion Capture cameras to film me as I walked back and forth across the room. It was unlike anything I’ve ever done before, and what was even more awesome was the fact that I was utilizing the same basic technology that filmmakers use to shoot movies like The Polar Express. (Fun Fact: That’s why Tom Hanks looks extremely similar to his animated character!) As it turns out from the results of the gait analysis, my Cerebral Palsy can actually be considered “asymmetrically diplegic” because my right hamstrings an adductors are also abnormally tight. It was definitely a shock to have my diagnosis changed a bit after 19 years, but to be honest, it didn’t really bother me! Just hearing that a doctor could help me walk better was basically some of the best news of my entire life. Yes, I am actually excited about the surgery that I will be having at the end of May.

For the sake of keeping things “even” both of my legs will be operated on. My hamstrings and adductors will be released, meaning the doctor will “snip” them allowing them to relax. Together, this will not only give me better flexibility, but also prevent “scissor gait” and the turning in of my knee on my left side. Also, my left achilles tendon will be lengthened (by cutting the outer sheath of the muscle, allowing the tendon to expand) and this will help me walk “heel-toe” with a more regular stride. In total, five of my leg muscles are going to be operated on, and surprisingly I will be leaving the hospital with the ability to walk (using a walker), a short cast on my left leg, and splints to wear at night while I sleep. There’s going to be lots of Physical Therapy involved (of course) but I look at the process with a “no pain, no gain mindset” This Jersey Girl is hoping to be back on the beach as soon as I get my cast off…even if it means trudging through the sand with that new walker of mine! (How’s THAT for PT??) Also, I’m hoping to be able to eventually go ice-skating and zip-lining (two things I’ve never been able to do but have always hoped to try) once I gain my strength back! I like being able to look forward getting on the rink at Rockefeller Center or climbing to the top of a tree then flying through the air. It may sound a little crazy, but no one ever said that when you have CP, you can’t do these things!!

Since I’ve gotten the news that I’m finally able to have all of this surgery, I’ve done a ton of reflecting. How are you supposed to react when the thing you’ve dreamed about your entire life suddenly comes true? I now feel this awesome new sense of confidence and readiness to take take control of my body that I hadn’t necessarily recognized during my high-school years, and I think that’s one of the reasons that I’m not anxious about what’s in store for me. Maybe to those of you who have gone through this process before, I could be sounding slightly naive…but I can’t imagine being afraid of a medical  journey that basically encompasses all I’ve ever wanted for myself. One of my favorite quotes is, “Worrying is like a rocking chair, it gives you something to do, but doesn’t get you anywhere.” I know that with  all the support I have from my family and friends, lots of determination and a couple of chocolate milkshakes, I’ll be able to conquer this journey and come out not only feeling stronger physically, but mentally as well. Throughout my teenage years, I’ve learned that the difference in how you feel about yourself and your future all depends on how you look at things. More than that, I’ve been re-inspired to never lose faith that everything will fall into place. Just thinking about the day when I’m completely finished with my rehab and walking in a brand new way gives me butterflies-it is all the motivation I need!!!

Keep on keepin on guys!! 🙂

-Annie

I Get By With A Little Help From My Friends….And Sour Gummy Worms!

Hi all–Katy here…. read on to follow high school senior/ inspirational stage performer/CP star– Annie’s second guest blog post on TeenCP!! Thanks 🙂 Have a happy holidays everyone.

Hey TeenCP…its great to be back! Thank you so much to everyone who took the time to read my last post by the way!!! Well, these past few months have been a whirlwind of EVERYTHING!! Between turning 18 in September, Hurricane Sandy for Halloween (or lack of Halloween) being accepted to my dream college ten days later, and then having my first CP related medical procedure in over ten years (Botox….and  it felt so weird singing the papers myself!) life has been full of so many crazy things!  And before any of you wonder what happened to me and theater, of course we’re still going strong. Over the past three moths I was able to student direct our fall play and spend the end of each day with six of my amazingly talented friends.  With them at rehearsal was the  best place for me to be, as I’m still counting on saran wrap and ice to get me through some (interesting) days of pain.

I’ll be honest, I don’t like sitting in the theater with ice on my leg. Not because I can’t take the pain, (I’ve learned to deal with it) but just because every time I look down, my leg seems to be saying, “Hi Annie, I’m still here. Remember all I’ve put you through in this room? Remember how you were self critical and frustrated because of me? Remember how you had hard days and were upset because I was all you seemed to think about up there? REMEMBER???!!!”

Yeah, I do remember it all. But the past is the past, and with time I’ve gotten better at telling myself to just take it all in stride. So that’s where I let inspiration come in! Quotes have become some of my best friends. 🙂 Whenever I find one that really makes me think or feel better, I’ll write it on a sticky note and tape it to my desk. They are  my own personal reminders to never ever give in to my challenges-that I’ll always be stronger than a limp and sore muscles!  And I’ve been trying to spread positivity wherever I can.  Whenever the cast needed something uplifting or inspiring (or even if they didn’t and I just felt like it anyway) I’d send out a quote or little post of happiness to make them feel good about themselves.  Before show weekend I snuck into the dressing room and put “break a leg” posters all over the place because I know how powerful positivity can be. I’ve also designated sour gummy worms as my “happy food.”  When I eat them, I have my own personal rule that I can’t stress and worry about CP (or anything else!!)  I just rip into the bag and take a little while to enjoy life and count all my blessings. So of course, on opening night I gave the cast each of their own “happy foods” too!

A few weeks ago while I laid on my stomach with my face smushed in my sweatshirt as I received shot after shot in the back of my thigh, it hit me that I’ve learned so much from having to “tough it out.” (Honestly, just the idea of being in a hospital gown seemed strange.) I’m so lucky, there’s really not much more to say than that. If anything, with a better outlook  towards my CP, I guess I have actually gained respect in a way. People will randomly tell me how positive I am now, and I feel like I’ve come so incredibly far since my sophomore year when all I wanted to do was hide from everything Cerebral Palsy was. Through it all, I know it was given to me as a way to have a beautiful, fulfilled life-not to  lose anything. I can truly feel like there are more important things in my life than just CP.  Because at the end of the hard days, I have people who I know will never question those two little letters but rather, sit there with me in the theater and make me laugh while we all dive into a bag of gummy worms together. 😀

Each show I do is kind of like its own little fortune cookie that I open at the end and gain a new perspective from. I guess this one would say, “Let a few people into you’re heart and when times are tough, they will be the ones to make you smile again.” For me, these would include my  six wonderful  cast members and super supportive director. They  are some of the reasons that I walk back into rehearsals one more time than I leave them. Sometimes I’ll find myself  sitting back with a sigh like, “Wow, I have Cerebral Palsy and it has given me a really great life.” But more than that, I have Cerebral Palsy, a way to keep it close to my heart, AND a place to let it go all in one….Really what more can a girl ask for?

Remember to always “Break A Leg” in whatever makes you the happiest 🙂

<3 Annie

My Heart’s On the Stage: How Embracing My CP Through Theatre Helped Me Leave Everything Else in the Wings

Hey TeenCP, Katy here…I am here to introduce our first TeenCP Guest Blogger, so please welcome Annie Nason and read on! Interested in sharing your story? Click “Contact Us” and tell me your thoughts! Thanks–K

Hey everyone, I’m Annie! I’m 17 years old and my form of Cerebral Palsy is Spastic Monoplegia. I’m so very lucky to say that CP has spared me so much, as it is very mild and only affects my left side (predominantly my lower body, but I also have some trouble with my left hand). My body is uneven, and this has led to mild scoliosis and some back troubles over the past few years. Of course, I’ve had a limp for as long as I can remember, and my left leg has always been shorter and less developed than my right. Throughout my childhood, I wore a brace, did therapy (physical and occupational) and also some minor treatments here and there, but that was basically it. If I was taught one thing as a kid, it was to count my blessings every single day. CP has never gotten in the way of me doing what makes me the happiest and that is truly a blessing within itself. I have loved the stage probably since I was about 4. When I was little I would sit at home and sing along while movie musicals played on repeat in our VCR, (bet you can’t guess my favorite….) and begged my parents to keep taking me to Broadway shows every chance we had. On top of that, I started training vocally and performing all around my hometown (which I’ve been doing for the past 5 years). There is something about the energy and the magic of performing that always lights me up inside.

Theater didn’t get “real” from an intensity standpoint until high school. Actually, I found TeenCP last fall at the beginning of my junior year, and at that time I wasn’t all that happy about how I’d finished the show the year before. I had been so wrapped up in how my leg looked to the audience and was so scared it made me different from everyone else up there. “Can they tell I have a limp?” was the question that constantly ran circles in my head. I was having lots of psych outs. Hyper focusing on it just sucked that great feeling of performing right out of me, and I was scared I wouldn’t be able to get it back. Honestly, I was regretting a lot….and I knew my attitude about my CP, (how I doubted myself and worried about it onstage) had the most to do with it. I guess I was driven over the edge one day when some guys started making jokes about how “gimpy” I was right to my face. To tell you the truth the first thing I did was laugh with them, and they thought that was even funnier (so I guess it worked) but then I went home and cried. That night, I found TeenCP out of the combination of wanting a new perspective and a little bit of empathy too. After reading posts for an hour I loved how real it was and it was an amazing comfort knowing that there were people just like me! I also learned that it was okay to embrace my CP and I knew that’s just what I wanted to do because it was time to change-both in life and on stage. And at the start of this year’s musical I had a new chance. At 17, I would be taken on quite the journey to find peace with myself and my left leg.

Physically, it is rare for CP to ever hold me back while I’m performing. Yes, there have been times when choreography has been changed just because of me, and I hate the reason behind it being, “Annie couldn’t do it!” In the end though, I have 2 options, let them change choreography or….fall. I guess like anything else, it stings for a minute but then I move on, because in the scheme of life changing one turn in a dance is not a huge deal and I’m lucky that people have my back. I could run away from theatre out of being afraid it’s going to get too hard, but then I would only be hurting myself. I could never imagine living without the rush that I get whenever I’m onstage and that’s what keeps me going. Of course, there has been a fair share of tough days here and there. One week, I spent every rehearsal with a bag of ice on my “bad” hip because the difference in my legs all of a sudden crept up on me again. And these are the days when my CP frustrates me mostly because I know I could give so much more if it didn’t get in the way. I just do the best that I can-and if that means dancing while holding an ice bag on my hip, I will. Actually, by this point the show was getting scary close and I was on the verge of PACKING myself in ice to make it feel better. I will not give up! CP has blessed me with too much to say “This hurts, so I can’t do it!” Occasionally, when I’m at rehearsal I’ll have a flashback of sitting in the same hospital waiting room with kids whose CP was so much more severe than mine. Now, our lives are totally different. So as I’m up there onstage, I’ll dance whatever number we happen to be doing just with them in mind. Because really, if I can’t remember where I have come from and how lucky I truly am, then I don’t deserve the life that Cerebral Palsy has given me.

I’ll keep it real-there is my own personal mental game to balancing my CP with theatre, and I do think about this more than I need to. As the show got closer, I would sometimes look out into the 700 seat theater and start obsessing about what was going to happen when all those seats were filled. And if I told you all that I didn’t lose sleep or have a few good cries over this, well, I’d be lying. But getting into 700 people’s heads is impossible and attempting to do this had once led me to lose the magic in what I was doing. Those same mistakes could not be made again. Finally, I decided that I am the person in control of what I do and how I feel onstage. The same day we had previews for the school, and those 700 seats were about to be filled with two of the toughest audiences ever. The night before, I was on the verge of having a complete breakdown while my various sources of encouragement tried to talk me out of my own head. (Seriously, they were so patient!) I don’t exactly know what I was so anxious for, as I had gotten through 4 previews in the past 2 years, but it was just the whole idea of being vulnerable again up there. Letting everything go in front of those people…the ones who knew I walked differently and judged me from my leg, (those guys from last fall kept entering my mind among others) was intimidating! But deep down I knew I was strong enough- and I knew admitting that I was ready for this-to just go up there and let it go, was much more the fear than in performing itself. At the start of the day I was a whole mess of emotions, but I could feel my confidence growing every time we finished another number. By the time we were ready to do the show for the second audience, I honestly felt nothing but empowered and excited. It hit me again that this is what I want to be doing, and it was that love for stage that didn’t fail to carry me through. By the very end the day, I felt more physically and emotionally drained than ever, but I just remember sitting in that rarely quiet theater feeling amazing. Not anyone held power over my confidence anymore, because I realized that it didn’t matter what they thought. I was making myself happy and honestly I know now that that’s the first thing all the right people will see when they look at me onstage. For four months, I hid my uncertainties of “Preview Day” in the back of my mind, and it was until I faced them (for the third year in a row!) that made me realize I can handle so much more then I let myself believe.

To me, both performing and theater have really been a blessing. Knowing that I could escape to rehearsal at the end of the day made things a lot better after someone called me a “gimp” or gave me a weird stare. Letting my CP be a part of my theatre life has provided me with these incredibly deep experiences that I am honored to have had. Over these past three years, things have been far from what I’d first imagined when I was a freshman in high school. I also want to point out that I did not say to myself back when all of this started, “I want theatre to change me!” I think fate let that happen on its own because I have learned so many lessons about life from being on that stage that people with two “normal” legs haven’t, and I will never, EVER forget them. Remember that self-doubt is your absolute enemy, and thinking too hard will only make things so much more complicated. It has taken me a long time (my whole teenage life) to learn that my leg and my limp aren’t worth all my worries and tears but that’s all part of the journey I know I’m meant to be on. Today, it’s the bucket loads of reassurance and the extra hugs that have also played a big part in getting me through. And you’re going to have your hard days, where you wish you could just hide away and have everything about your body be “normal” and “perfect” but that’s okay-you are only human! Progress takes time- Don’t ever give up on yourself! Why? Because YOU ARE STRONG! Trust me, knowing that you can will sometimes be all you need.

With that, my challenge to you is to find a way to let your Cerebral Palsy light you up the way being on stage has done for me. You have the power to do whatever makes you the happiest and to love life, regardless of how the world defines you. CP has given you so much more heart, wisdom and courage than any one of your haters could understand. After I took the stage with my cast mates for the final time this year, one year after my rock bottom, and this time in front of 1500 people, something hit me…that I am no longer fueled by the fear of having something to prove from my CP but from the passion that I have for performing- and that’s the way its supposed to be. I had a few realizations like that over the course of this show but this was probably the deepest of all of them. I didn’t force it, it just came, and it felt beautiful. That night, May 23rd 2012, I left more than just my heart on the stage; I left every single doubt out there too. After I got home I said to myself, “Wow I was having so much fun, running on so much adrenaline, that the way my leg looked never even crossed my mind!” To me, being able to walk away from a show feeling like that is a gift that I will value literally for the rest of my life. A lot of people probably would bet that my perfect world would be living without Cerebral Palsy, but they’re wrong. Everything CP is…-the ups and the downs, the pains and the triumphs, and every little epiphany in between (especially as a teenager) has made my life so much more fulfilling and beautiful

Keep on loving an embracing everything that makes you happy, and remember that your flaws never have or ever will define you<3
~Annie