Tag Archives: TeenCP

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!

Untitled

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

“Give a girl the right shoes and she’ll conquer the world” – Marilyn Monroe

10269458_10152773614452598_4423028570409871577_n

Hi everyone,

I’m Jessica and I’m 23 years old. I was diagnosed with Cerebral Palsy when I was 4 months old in a unique way. I got pneumonia which caused one of my lungs to collapse. When that happened I lost oxygen, and as all of us know thats one of the ways to get CP. I was placed in a coma for a week, and eventually I became healthy again. From a young age I had to become a fighter. Cerebral Palsy has a funny way of forcing you to get thick skin. Eventually you learn to let the looks and comments roll off your shoulders, because in my head those people who say things don’t matter. I have a mild case of CP that affects me from my waist down on both legs. I got the percutaneous lengthening surgery twice. Once for my hamstrings and the other for my achilles tendon. The surgeries were life changing for me, it gave me a chance to have loose muscles along with stretching everyday. Also for the past two years I have been getting botox injections in leg muscle to help with my spasticity. Im loose and flexible now with very little spasticity but still walk with a limp.

When I was young I never thought twice about it, I never knew anything was wrong until kindergarten. My Cerebral Palsy never held me back, I did everything I wanted to do. It might have taken me a little longer, but I did it and thats all that matters in the long run. I pretty much came to terms with all things related to Cerebral Palsy, Physical therapy, stretching, gate training, strengthening exercises, but the one thing I can’t come to terms with is SHOES! I’m sure you all can agree with me having CP and shoe shopping is not fun! It’s the one type of shopping I dread and try to put off. After having years of experience of shoe shopping with CP I think I got it down to a science. I have some shoes & tricks that I want to share with you all.

truestrenght

Sneakers– I am definitely a Nike girl! Although I am picky with the weight of the sneaker, I usually get the sneakers used for running, I find that these are not to light but not too heavy. Right Now I love the Nike Dual Fusion line.

Slippers– Even though slippers are meant for comfort it’s still important to keep your feet in the right position all the time. I am in love with the brand Vionic! They have an arch and a heel cup, they are made for people who need medical footwear. I have the Relax Luxe they are my favorite.

Sandals– I’m definitely the most difficult with sandals, It took me a while to feel comfortable and confident in them. I have two brands that I will only wear they are Bare Traps & BOC. For me finding a sandal with a sneaker like bottom works best. I also make sure the sandal has a ankle strap for extra support. When I walk in the BareTraps & BOC sandals it’s almost compatible to sneakers.

Sandal Tips– I hate when my foot slides around in my sandals.It is impossible to wear an orthotic with some sandals. My fun tip is I buy the Dr. Scholls gel heel cushions and trim them to fit my shoe then glue them to the inside by the heel & the toes.

Boots– Again I have to say I love the brand BareTraps & BOC for boots. If I do stray away from those brands I always make sure the the boot is flexible & has a rubber bottom so you don’t slip! Again I look for that sneaker like bottom for comfort & I make sure I can slip in my Orthotics.

Heels– Wearing heels is a struggle but lets be real having CP and balancing on a stiletto is out of the question for me, and thats something that took me a long time to accept. I would give anything to walk in heels and be confident and comfortable, but thats not always the case. I am not a toe walker so feeling the pressure of being pushed onto my toes gives me anxiety, I feel like I’m going to topple over. As of right now I only wear a heel with boots or booties, I normally wear a low heel about 1 inch to 1 1/2 inch. I make sure they have a rubber bottom and is a flexible shoe. Right now I have the Kenneth Cole Women’s Riding Boot. I love them and I’m very confident in them, and thats all that matters. I recently have been gate training in wedges so I can wear them outside and not only in the comfort of my house.

Orthotics– I wore day and night AFOs until I was 17 years old. I am now able to buy over the counter orthotics. I wear them in every shoe except for sandals. Two of my favorites are Vionic and Spenco.

Now, I am definitely not a Doctor but these are just some shoes and tips that work best for me. Also I would like to thank Katy for making this blog, it’s always nice to relate & talk to people who are going through the same thing as you!

xoxo Jessica

A Myriad of Musings (over coffee & croissant)

IMG_8060

This morning I walked into the (quietest) bank and I must have made some noticeable noise with my flip flops because two people turned around and gave me “the look.” They looked at my feet, my face, and then back at my feet. It happens nearly every day but today these glances felt different. It was quick, almost undetectable by anyone else. They probably didn’t even realize they were staring a few seconds too long, but it was obvious to me. It felt a little disheartening, mostly because it is unwanted. I don’t like this kind of attention, as would anyone who deals with a physical disability or noticeable condition. I just want to go about my business some days but it is inevitable. It is just a part of having CP, I guess.

I don’t know why it bothers me so much. I know that it is human to be curious, interested, concerned etc… but there are some eyes that linger a little too long and that seems impolite. I wanted to look at both of them and say “what?!” As if to wake them up and help them understand that yes, people aren’t all the same. Our bodies all carry us through life in different ways. No, I am not in a wheelchair but yes, I have a disability. Yes, I look so “normal” but I have CP and I am not afraid to share that; it’s always been and always will be apart of me. I’m good with it, trust me. Can you be good with it too?

That is what I want to say to people sometimes but usually I will walk away if I don’t feel very strongly about it. At the end of the day, it doesn’t really matter but I think it is good to speak up in moments like these if it is warranted; it is an opportunity to education those who are ignorant of disability. It takes a lot of courage to do so and you might risk the chance of drawing more attention to yourself, but it may be worth it. You might embarrass that person and that is okay. A lot of people need to realize that to have a disability does not make us less capable of handling the opinions and reactions of others. Countless times, people have approached me and simply asked if I was okay and in response I would say, “yes thank you, I have cerebral palsy. My muscles are just tighter on this side of my body.” And I am putting into words what they have already seen! But they act as if they suddenly asked the worst question in the world, and tell me how sorry they are for bringing it up–as if I am as uncomfortable as they are with talking about it.

Well that reaction needs to change, but I wonder, will it? I wonder why things are this way in a world where there is so much diversity already. When will it be okay to exist in the grey area of our humanity? I mean this in terms of disability but also in other binaries. Think about it: we aren’t always normal OR disabled, republican OR democrat, black OR white, happy OR sad. Sometimes we are just fine, we become injured, we change. We are just bodies and odd mixtures of opinions, emotions, and spiritualities. We identify with ourselves and the world around us in this way, but is life really meant to be categorized in such strict boxes? (Yes, physical characteristics may need more clear definitions) but shouldn’t it be okay to be sometimes this OR that?

That is really why I like to talk about having a disability so openly because I believe it encourages empathy and understanding in others; even if it is to one person at a time, a one-on-one conversation does make an impact. So if there is a grey area to everything, I passionately support the notion that it is “normal” to fall in between these identifiers as we move through life. That’s just it– life is transitional. We go through stages, and phases, and we develop, and grow. Every day we wake up, we discover something new about ourselves and the world around us!

Much of this is my perspective from my own experiences and understanding of things I’ve read and discussed with others and you are free to dismiss it… but either way, I hope to have enlightened the way you think about having CP in the context of just being who you are, no matter who you choose to be today. Thanks for reading. 🙂

-Katy

Join us on Twitter for #CPChatNow !! (And Guest Blog on TeenCP!!)

CPoZ-A8WgAA5uAB

Hi Everyone! Katy here– I know it’s been WAY too long…

But I am trying to get back into the swing of things on TeenCP now that I have officially graduated from college! (yes I am no longer a teen– but 23 is still cool right?) Anyway, I am going to be on Twitter next week to answer any questions you may have about how to introduce your CP to the new people we meet in daily life.

All you have to do is:

A) Have a Twitter account

B) Hashtag #CPChatNow with any questions you have regarding our topic of the night:

“Introducing Your Cerebral Palsy When Meeting New People”

C) Tag me, Katy @teencp if you can, so I can answer your questions more directly

D) Have fun!!

P.S. If you don’t have questions specifically for me, please still join in for the last hour of open discussion where you can bring up anything that’s on your mind about your experience with CP. That’s what this is all about!

You might be wondering– What is CP Chat Now? Or who is behind this awesome social movement? Well look no further than this link!  What is #CPChatNow?

Thanks Zachary Fenell & Blake Henry for starting this Twitter chat for the CP Community, you guys are awesome and so dedicated to creating such a unique space for us all to connect with other people like ourselves! I am so excited to host your next Q&A session, I am so honored you thought of me to do so!

Lastly, I hope to be on here more often, my friends. If you would still like to guest blog, I will now be checking teencerebralpalsy@gmail.com regularly and can help you tell your own story with CP. It would be a huge help if you could please fill out this contact form (even if you already have) so I can get more organized and start posting new content from all of YOU, my TeenCP peeps!! I think everyone is ready to start reading some exciting stuff. 🙂