Tag Archives: teenage disability

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

Featured Spotlight: TeenCP in 2015!

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Hi All,

I do hope your November is off to a good start! I’d like to give a warm thank you to James Randolph of Artiscend, a digital archive spotlighting inspiring stories from artists, musicians & people from all over. This article below is a lovely profile piece on me & TeenCP. I really appreciate how genuine these words come across, especially as they are so personal to me & everyone who has been alongside my internet journey. The power of voice proves to be yet another way to extend our reach beyond amazement!

What is Artiscend?

“Our job is to be the avenue for the talented craftsmen and artists who want to see their work appropriately spotlighted and for the patrons of those artists to have a place to express their appreciation.We always feel like those who deserve it most are those who are appreciated least and we hope to help change that. Musicians can receive direct support from their fans,  Application designers and game developers will have a platform to receive credit and contribution from the technology they’ve created and inspired. Wherever the artists are changing the world, we’ll be there to help them realize their vision.”

Click me: >>>Artiscend Article on TeenCP

Hope you enjoy it, I know I did! 🙂

-Katy

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

The Abject Body: Bodies That Matter

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Hi everyone,

In correspondence to my “Writing the Body” course this fall, I have added a few pages and resources to TeenCP to provide some more informative texts about Cerebral Palsy and how it affects the body. Go ahead and take a look at the navigation bar up top if you’d like! In addition to the amazing, inspiring stories that all of our guest bloggers have put forth, I am writing to you all today out of curiosity. I want to know what you all think about the following quotation that I pulled from one of my class readings in an interview with philosopher Judith Butler, about the “abject body.” Keep in mind, this is just a term that we use in language to describe the body–it doesn’t always mean that it is used accurately or justly, but it is still apart of society’s vocabulary to describe the disabled community– just like people use handicapped, disabled, crippled ect… and I would like to explore this with you!

First, I will define abjection for clarity: The term abjection literally means “the state of being cast off”. In usage it has connotations of degradation, baseness and meanness of spirit; but has been explored in post-structuralism as that which inherently disturies bs conventional identity and cultural concepts (Wikipedia.) 

[The abject body as it] relates to all kinds of bodies whose lives are not considered to be ‘lives’ and whose materiality is understood not to ‘matter.’ So, we get a kind of differential production of the human or a differential materialization of the human. And we also get, I think, a production of the abject. So, it is not as if the unthinkable, the unlivable, the unintelligble has no discursive life; it does have one. It just lives within discourse as the radically uninterrogated and as the shadowy contentless figure for something that is not yet made real (Butler, and 275-286).

I’d like to know what you all think about Judith Butler’s idea about the abject body in relation to normalcy and society. My own thoughts/questions are as follows: What are/are not “bodies that matter,” and how is the disabled body one in which is “radically uninterrogated”…. should our bodies be considered real, how/do they matter, and if yes, how do we alter society’s perception to show that the abject body does not have to live a discursive life? 

Thanks everyone, I hope you find this topic as interesting as I do. I am looking forward to your feedback and own comments and queries, with your permission I might share them with the class if I get enough responses! Feel free to directly respond to my own comments, or share your own. Please start a comment thread if you are willing!

Have a great week ahead.

-Katy

Note: Butler, Judith, and Costera, Irene, Prins, Baukje . Personal Interview. May 1996. 

What Do You Want The World To See?

Hey everyone , My name is Britany and I am 22 years old and I have mild Cerebral Palsy. I am writing a speech on Cerebral Palsy Awareness for my Communication course in college. I have been thinking of what I am wanting to share with my class so I decided to reach out to all of you. I hope you enjoy 🙂

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Some times it’s those little comments and curiosity’s that leave you hanging in that moment of : “Did so and so really just say or ask that? How can the not see me as a normal HUMAN!” They sting and hurt so bad sometimes you just can’t think of an answer to the misconceptions that others have of someone with Cerebral Palsy. No our disability is not life threatening ,if someday we are blessed to have our own biological children NO they can’t “catch” Cerebral Palsy-these are just a few of the answers I have had to repeat over and over throughout my teenage and young adult life. Now at the age of 22 ,I am wanting to see any and all of fellow cpers to help me take a stand and show that we are really unique and that we are individuals as well. What are some misconceptions that you wish people didn’t have of people with CP? What are helpful ways of interacting with individuals who have CP? What are YOUR hopes and dreams for YOUR LIFE despite having a disability that may make you just a tad slower than your normal peers?

Being the oldest in my family has made me develop some very thick defensive skin when it comes to talking with others about my disability and how it has shaped me into the young woman I am today. I have had to become my own safety net so to speak when guarding myself against questions and comments that are hurtful as well as becoming a light to those people who simply just don’t know enough about what I go through, in the most graceful way I can.

In writing this blog I hope to inspire and get to know my fellow peers with CP . I often have to repeat to myself throughout the difficult days were the staring of strangers at my walk or the mutterings of strangers because I am going to slow,I am who I am, I am blessed and I am STRONG. That is something I strive to show the world each day. What do you want the world to see?

Britany