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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

Getting A Temporary Taste Of CP

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My name is Katelyn Place, I’m 21 years old, and I do not have cerebral palsy. Katy and I have been best friends for 16 years now. I met her and her sister Sara in kindergarten at the age of 5 and they have been two of my best friends ever since. To me the way Katy walks has never seemed odd or out of place. I have never once questioned the way she is because at 5, I didn’t notice it. We grew up together and she has always just been Katy. She never really expressed how her CP made her feel until we were older and the nagging self doubt of getting into our awkward phases of growing up and dealing with high school came into play. When one of your friends has to go through something like what Katy has dealt with all you can really do is express sympathy and feel for them. I hurt for her, but I had never walked in her shoes so I couldn’t really relate to the things that she was telling me. Until a week and half ago that is.

I have been experiencing pain in my right knee for close to two years now. I am a ballet dancer in my free time, I have been doing it on and off since I was 4 years old. So as soon as the pain started I made an appointment to see a doctor because I wanted to make sure that I did not tear something or injure myself. After MRI’s and X-ray’s and many, many misdiagnoses my Orthopedic Surgeon, Dr. B, came to the conclusion that I had Iliotibial Band Syndrome, something common in runners (I don’t run to save my life) and pregnant woman (this goes without saying, I was obviously not pregnant). So I mentally told myself  that I was fine and got right back into dancing like I was before. This was all fine and dandy until I noticed an odd growth underneath my knee. It started out fairly small, but as time progressed it got bigger and the pain came back even worse than before. So, back to the doctor I went. At first glance he told me that it was most likely a cyst on my patella tendon but an MRI would be needed to make sure. And of course I had to go back into that loud, cold, and time consuming machine. When the MRI came back there was nothing there. How something that could clearly be seen and felt from the outside did not show up on an MRI blew my mind. I sat in the room fighting back tears because I was in pain everyday and the physician’s assistant was trying to tell me to stay off my leg. Something as a bartender, culinary student, and dancer that was impossible for me. After I told her to go get Dr. B and I looked him square in the face and told him to take it out, my surgery was scheduled for November 14th.

I was nervous for the surgery because I had never been put under before or cut open. We could not do arthroscopic surgery because Dr. B did not know where exactly this thing was. So they wheeled me into the O.R., Dr. B held my hand in both of his as they put me out and told me that he would take good care of me. Doctor Bret Bachelor is one of the best Orthopedic Surgeons in the southern California area so I went under believing nothing less. An hour later I was in the post-op area and waking up from my surgery that turned out to not be a cyst, but most likely an extra piece of bone that grew and was pushing on my patella tendon. I say “most likely” because I am still waiting for the pathology report results, which is a little terrifying in its own right. Long story short, it shocked Dr. B and his assistant because that was not what either of them was expecting.

The recovery process has been hard and painful. This is where I got my taste of something that Katy has told me about but I had never experienced. A few days later I was finally able to take the bulky bandages off and change it into something less drastic. While I was at it I decided to move my knee because some stretching and bending would help my muscles not be so tight, and as a dancer my flexibility is everything to me. But, my knee wouldn’t bend. I was shocked. My brain was telling it to bend, but it wouldn’t budge. And then every ounce of me was screaming at my brain to bend my knee, to do SOMETHING! It still wouldn’t move. It shook like I have never seen any part of my body shake, but it didn’t bend an inch. So I cried and texted Katy because now I was able to understand just slightly, what she has to go through. I am lucky, my knee will heal and I will go back to bending it like before when it is ready to completely bend. I am also blessed to be able to make art with my body in a way that some people will never be able to experience. I have always looked up to Katy for her unwavering strength and her beautiful gift with words, but now I look up to her, and all people dealing with CP everyday, even more. Because now I have experienced what it is like to tell your body to do something and have it not obey. I am so very lucky to have such an amazing and strong friend like Katy and this experience has been easier with her just a text away when I was scared.

Thank you for reading my (long) journey that Katy let me share with all of you 🙂 — Katelyn

What I Learned About Life (From My Body)

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Katy here…

For all the CPers and non-CPers:

I have cerebral palsy; a physical disability that affects my muscle tone and coordination in the left side of my body. The whole “mind tells, body obeys” thing doesn’t quite work with me—and I walk with the grace of oh, I don’t know…a toddler who just woke up from a nap and thinks she can run down the stairs just before her legs remind me that her stride is not fully intact. One could say I’m not runway model material, but maybe I could start a new trend, who knows. I suppose that over time, my attitude toward my body has evolved from several emotional stages: my youthful and somewhat blissful ignorance, to my teenage insecurity & anxiety, which transformed itself into a somewhat frustrated indifference toward my body and its physicality for some time.

oct iphone 121 Having grown up playing soccer and always staying active around my fit family, my body decided it finally had enough and gave in to some of the pain and discomfort it had been putting off all of my life.  Both my feet now have metal screws infused into my bones due to severe stress fractures that  happened within one year of each other. Were my injuries preventable? Is a lifetime of injuries what I  have to look forward to? How am I going to stay active? These thoughts worry me, disappoint me,  and make me think twice about pushing my body to its limits.  I am thankfully healthy once more and  in recovery, but I have become more wary about the things I let myself do: No more training for long  runs, racing my college roommate on bounce houses, or crazy hike adventures with my friends—at  least not for now. However, if any good has come from this, it is that I have learned to be more  conscious of the way my body functions and its limitations due to recent injuries that have greatly  affected my mobility and overall satisfaction with my body’s resilience. I think that staying active  is my way of being in control and keeps my fragile emotions and stress in check. Becoming  temporarily more disabled with my legs, feeling more helpless, and more discontent with my body  was heartbreaking. Simultaneously, this loss of physical control revealed to me, more about life that most young people may not have the opportunity to know and understand. My loss of fierce independence attributed itself more to the emotional side of my physical hardships; I had a hard time letting go of my pride and allowing my family and close friends help me do the things I once did with great ease, before my injuries.

It is not until now, do I realize how lucky I am to have CP in my mild condition, and how fortunate I am to be in the body that I am in today; still able to walk (granted, with some discomfort) and still do the things I want to do, just slower than before. Despite my awkward stride, uneven hips, and lack of athleticism, I am who I am today because of my CP. In the same token, I am not my CP and my CP is not me. I am much more than my disability and I like that about myself.

Below, I’ve listed some of my own guiding thoughts and musings that help me deal with my CP and many other aspects of my constantly changing life. I’d like to share them with you:

Life is about perspective: Only you can decide how your CP defines your identity, your happiness, your growth

Disability is diversity: This idea creates more of an awareness about your body; you are diverse, own it

Everything is relative: Limitations are like guidelines, use your ability to adapt and be resilient

People fear what they do not understand: Educate your peers about your CP. Turn their judgment or curiosity into understanding

Thanks for reading. Stay happy and healthy my TeenCP friends!

-Katy

Self-Acceptance and Love: Learning to Love My CP

Hi all, Katy here– Meet Kate M., TeenCP’s latest guest blogger who bravely shares her beautiful story of how she rose above her own insecurities and struggles and learned to deal with having Cerebral Palsy. Read on…

My life could have turned out very differently. I was born 29 weeks premature along side my twin sister in November 1989. Both of us sick, and me given an early death sentence not to make it past our second birthday. It could of easily been her writing this right now and telling you this story, but as life would have it, I’m the one writing this.

 

My name is Kate. I’m 23 years old and I was born with spastic cerebral palsy that affects the right side of my body. And I wouldn’t change a thing. You see, throughout my teenage years I was plagued with self-doubt and insecurity. I hated the person I was. I was bullied relentlessly in middle school, told I was ugly, was locked into bathrooms and so on. It got so bad that at the age of 13 I tried to take my own life.

 

As I got older and moved on to high school, those feelings of hatred stayed with me. I wanted more than anything to have a “normal life”, the kind of life that my able-boded friends and sister had. Like all teenagers I went through a rebellious stage: to numb my own pain I experimented with drugs and alcohol to try and fill the love I couldn’t seem to find for myself. I would always end up with the wrong guy with the absolute wrong intentions. I really just wanted someone to love me for exactly the way I am.

 

During this time, I was naturally very ashamed of my own body. I’ve had about 9 operations in my lifetime that have left me with numerous amounts of scars. The most prominent scars being two long scars that go vertically up my legs and the scars from the chest tubes that kept me alive as a baby. I never wore shorts or bikinis for the longest time, always afraid that someone would come up to me and ask me about my scars, or ask what was wrong with me. I even began to ask myself that very same question.

 

After I started college, I gave myself the help I had most most desperately needed.  I began seeing a psychiatrist who formally diagnosed me with depression and Generalized Anxiety Disorder. I remember in one my first sessions, the doctor made me look at myself in the mirror. She asked me to list five things I liked about myself, I looked at myself in the mirror and began to sob: “I don’t see anything”, I told her.

 

I stayed in counseling and therapy, dissecting all of my fears and insecurities in these closed door sessions, until one day I realized that I was ashamed. I was ashamed to say that I have cerebral palsy.

 

What I didn’t realize is that CP is my gift.  It is apart of who I am, it does not define the person that I am. It gives me the ability to view the world and other people in a different way.  The scars left on my body are a gift of life, and wear them with pride now. They are unique, and they are mine.  For years, I hid under a cloud of shame and now I choose to live on the sunnier side. Life is all about the choices you make. I have the ability to walk, talk, and drive my own car. And as long as I have those abilities I’m not going to waste them trying to be anyone but my own person.

 

Learning to have confidence in yourself takes time, and you have to allow yourself to have that that time to figure it out. Find out who your friends are, and get rid of the ones who try to dim your light (again, takes time), find a support network. I have a group of disabled and able-bodied girlfriends who give me massive love and encouragement. Trust me, it might not feel like it, but there are those types of people out there in the world.  They do exist! Getting comfortable in your own skin is a daily battle.

 

The other night I was hanging out on the rooftop  of a bar in the heart of the city I live in. As I was talking to my friends, I suddenly looked up and saw where I was. I said to them: ”isn’t it weird that you can live in one city your entire life (I have), and not realize how beautiful it is?” That’s how I think about my CP now.

 

I wanted to share my story with you guys because I know I’m not alone, and if you are out there and struggling with any of the same issues, know this: it does get better and there is help out there. None of us should be ashamed of the fact that we have CP, it is apart of us. We have to support each other.

 

Follow me on twitter @katethemuse 🙂

 

LOVE.