Tag Archives: Teen Cerebral Palsy

FAREWELL, TEENCP (I AM READY TO LET YOU GO)

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Here is my long overdue announcement & final post on the blog.

As of May 3rd, 2017 I will be disabling the comment/contact form as I will no longer be actively checking this website. if you would like to contact Katy, you can do so via Email: katy@cerebralpalsystrong.com & follow related social media: Facebook, Twitter, Instagram

How did TeenCP begin?

….I was 17 at the time and in great need of an outlet to talk about what life is like with a physical disability. I wanted to find someone just like me, who could understand what I was going through. This was immediately a place where we could talk openly and honestly about how to deal with the comings and goings of adolescence and all of the feelings imposed by cerebral palsy. What became of this website was more than I ever could have imagined. I felt as though I had established a community, and in turn– I cultivated friendships with likeminded individuals who were just as excited to share their experiences with CP in the hope of helping other teens and young adults like ourselves. It was so exciting! After countless guest bloggers, newsworthy mentions, and even a few awards of recognition I felt like I was beginning to contribute something of myself that so many teens (and even parents of children with CP) could benefit from. I was empowered; these personal experiences, no matter how mundane they may seem to me, I know they are important to someone else.

TeenCP has taught me that everyone has a story, and there is no limit to our capacity to tell our stories no matter how unoriginal they feel. So much of our lives are lived online and so it is vital that we continue to impart all the knowledge we can–whether it is simply highlighting a pair of shoes that are easy to wear for our clumsy feet, or about a moment that changed one’s perspective on having a disability–it is all worth sharing.

LAUNCHING #CPstrong {click to follow}

Now it is 2017. I find myself having graduated college, traveled near and far, entered a committed relationship, gained work experience, and even applied to graduate school all the while, not writing as much as I hope to and barely keeping my online presence afloat. And I miss it dearly. At 24, I have entered into adulthood (or at the very least exited adolescence) which in turn, has moved far away from my TeenCP writer’s voice and constant feelings of inadequacy.

It is with this new blog that I hope to rejuvenate my voice in the disability community and share with you facets of my identity as a young woman navigating daily life with cerebral palsy. It is time to celebrate our bodies and all that life has to offer us and with www.cerebralpalsystrong.com, I plan to write about some exciting changes, adventures, realizations, and discoveries I have made about what it means to live life with a physical disability. I will elaborate on my philosophy behind #CPstrong and how it has empowered me to keep moving forward in this next phase of life in the healthiest way possible.

The spirit of TeenCP will remain alive & well in its new, more mature form. I welcome your stories in addition to my own and I want you to know that you are not alone in the daily struggle in all things CP. Those awkward teen years may be behind many of us (thankfully) but life moves forward and I know I am still finding my way amidst a sea of changes and lingering anxiety toward an uncertain future. That is why I want to share with you more about my life as I transition into this uncharted territory we call “our 20’s.” Most of all, I will always consider myself an advocate and voice for those who don’t know how to share their own story, or don’t have the platform to.

I whole heartedly believe that the world around us will only begin to understand what it is like to have CP so as long as we keep being vocal, proud, and open about our CP. It takes practice, time, and most of all courage but I sincerely support the idea that dialogue is one of the many ways we can rid our peers of stigma, ignorance, and fear toward those who are different than themselves.

As for www.teencerebralpalsy.com, it will remain as is, with all the guest blogs intact. I will archive it as its own small piece of history in the vastness of the ongoings in the disability community. I will also be changing the Facebook, Twitter, & YouTube account to some version of #CPstrong in the near future so keep an eye out if you are interested in subscribing to those channels! Thank you to those who helped keep it alive all these years alongside me!

Lastly, I am so proud to witness all of the progress that our community has made over the past several years in many ways. Although I have been a more passive participant, it seems that more people are writing, sharing, and opening up about cerebral palsy in the way that our technologies and media have never before allowed! It makes me so happy and I am excited to see where the next few years take us in terms of community, research, and social/political acceptance.

Thanks for reading!

Goodbye Teen Cerebral Palsy, Hello Cerebral Palsy Strong

-Katy

The Grey Areas of My Body Image

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Let’s talk about everybody’s favorite topic: body image. I hope that you could sense my sarcasm in that statement, so please know that I am being so sarcastic there! Body image is by far one of my least favorite topics to discuss. But it needs to be discussed. If you have found your way to this blog, you may be a parent to a disabled child, you may have a disability yourself, or you know me personally and want to see what I have to say. I would like to discuss the topic of body image when you have a disability. It is not as black and white as you think.

First off, I would like to make it clear that I think having a physical disability is one of the most beautiful gifts in my life. It forces me to think differently every day because I frequently have to adapt to my surroundings, and it has given me the ability to be a great empathizer. My physical disability connects me to so many wonderful people, and it is truly an honor when people reach out to me and tell me that I have influenced them in a positive way, or that they have discovered hope for their disability through my writings. I cannot completely express how humbling and amazing these connections are, and I hope that nobody is ever shy to reach out to me. You can always reach out to me. I appreciate it more than you will ever know.

I accept my physical disability for what it is. I know that I cannot change it or who I am, and I do not want to. I do not get caught up in the negativity anymore of completely despising my body. But, I still have days when my sub-conscience overrules my being and I believe that nobody else will accept me for who I am.

Let me introduce myself. My name is Jessica Paciello, and I am a soon-to-be 21 year old currently attending college to become a pediatric physical therapist. According to medical definitions, I am also physically disabled. I was born in May 1995, and I was immediately diagnosed with congenital hydrocephalus at birth. My diagnosis of mild hemiplegic cerebral palsy, which is definitely the greater and more challenging of my two evils, would follow eighteen months later. However, at two days old, I did have to undergo brain surgery to implant a shunt that drains from my brain’s ventricles, down my neck, all the way through my stomach, and into my abdomen. Basically in laymen’s terms, I had too much “water” (cerebrospinal fluids) on my brain, and that can cause serious health complications if the problem is not surgically corrected. When I inform people that I have undergone brain surgery, they freak out. That’s understandable, but on the scale of neurosurgical procedures, shunt surgery is so common and it is one of the easiest brain surgeries. I was never scared of it, and I am still not. The brain is the most intriguing organ to me. In fact, if I was not physically disabled, my dream job would be to become a neurosurgeon. Anyway, I want to give you a little bit of background about me so you can understand that growing up, I took viewing my body in a positive way in strides. However, I really am not ashamed about being disabled. I fully understand that every single person on this planet has their own unique story, and my story just includes a lot of medical talk and doctors’ visits.

Fast forward eighteen months after my birth, and the words “cerebral palsy” were discussed for the first time. Doctors explained my formal diagnosis of “left-sided hemiplegic cerebral palsy” to my parents. This is still in conjunction with my hydrocephalus. Neither diagnosis goes away with time. They will both stick around with me for the rest of my life. Hemiplegic cerebral palsy means the left side of my body, specifically my arm, leg, and trunk are significantly weaker than the right side of my body. I have full mobility in the right side of my body. Some activities that are harder for me to accomplish because of my CP include: typing (I am almost always solely typing with only my right hand), wiggling my left toes, and I walk with a little bit of a limp. Oh! And it sounds silly, but I cannot properly form a “peace sign” or “thumbs up” with my left hand. Sometimes, the littlest tasks like those frustrate me so much. I have rejected dinner dates with guys before as “first dates” because I cannot properly cut my food at restaurants in “normal” fashion. I cannot hold a knife in my left hand and cut my food. If you have ever asked me to grab a bite to eat before, I am so sorry that I laughed in your face. It is just a defense mechanism because restaurants are such a source of anxiety for me.

There are many more challenges I face because of my CP, but those few are the first that come to my mind right now. Growing up, I understood that because of my disability, my body had a “good side” and a “bad side”. There have been so many times when I had overcompensated for my “bad side” and I just did not want to use my left side at all. As a teenager, I felt very self-conscious about my disability, and I felt very alone because of it. I am the middle child and I have two sisters. I always compared myself to them, and I always knew I looked like the odd one out because of my physical conditions. Now at 20 years old, I actively try to change my pattern of negative thinking about my body, but I would be lying if I said that is always so easy. I am opening up about this issue because I know that I am not alone in the struggle of worrying about body image. Summer is just around the corner, and I just want to press fast-forward through this season because it means the scars on my body will be more visible to people. I know that my scars are overall a sign of strength that show all that I have overcome, but there are still so many days when I just want to hide from the world because I feel like it is not accepted. I trace my fingers down my skin, and there are more scars than I can count. I have avoided going out and being as social as I want to be in college because sometimes I still cannot shake the feeling of how down I get about my body, and during these times all I want to wear is loose baggy clothes so my arm and leg are hidden and not highlighted.

Positive affirmation is a funny concept when you have a disability. I frequently get called “pretty” by friends, family, guys, and strangers. I do not say this because I want attention or anything like that, but I need to make a point. I strongly believe at times that because of my physical disability, I am not any of the compliments people call me. It is hard to get out of my head sometimes. I am my biggest critic. I have such a hard time trusting people who say nice things to or about me, and I want to own up to that fact and apologize to any person who has been kind to me and did not receive a proper thanks. I feel imprisoned in my body some days because half of my body works perfectly and the other side does not. It is hard for me to believe that people find that “pretty”. But I really am trying to be more positive every single day of my life. I am trying to be kinder to myself, and kinder to my body. I am trying to be kinder to those who are kind to me and those who do not get frustrated with me, because they truly understand that positive affirmation is so difficult for me to wrap my head around.

Having a physical disability is very much a learning process every single day of your life. You will not magically understand your body and your perceived limitations overnight. I am still learning about my body daily. I want people to know that people with disabilities do not need or want your pity. I do not need pity. I do not want pity. I hope for understanding however, and that also begins with me understanding myself and owning up to my body image issues.

I know it will get better. Again, I am not ashamed of my physical disability. I would not know who I am without it, but I do know from personal experience that it can at the same time lead to confusion every single day. You can like and accept something that is important to you, but at the same time believe that nobody else will understand it fully. Not everything is understood in black and white terms. Life is full of grey areas. I want you to know that it is okay to be confused about your body. It is okay to be frustrated at times. It is okay to be honest. 

They say there is beauty in vulnerability. I hope they are right! XO

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

A Myriad of Musings (over coffee & croissant)

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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!!)

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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. 🙂