Tag Archives: perspective

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

You get what you give

Hi all,

For a number of reasons, this saying has been on my mind all day. Today, I wasn’t feeling so positive when I woke up. I don’t really know exactly why. I knew I had a long day ahead of me and began making a mental note of all the things on my “to-do list.” Doing that just made me all the more anxious and unprepared for my day. I easily overwhelm myself sometimes, but I can just as easily calm myself down in the end. I knew this was not a great way to start my day so I really made a point of telling myself, “I have the power to change my day” and as I walked to class this morning I was thinking… many things in life are just parts of the whole. Everything is cyclical. It’s that unrecognizable form of good and bad karma or energy that we put out in our world that we need to take more notice of. I had a bad energy festering up inside of me and I wanted to be rid of it. With this in mind, I took some deep breathes of the fresh air and watched the sun shine through the eucalyptus trees around. I later ran into one of my good friends who graduated from Soka last year and got to catch up with her. Later, I had two classes after lunch and learned so much! I love learning because it motivates me to question and to  gain more knowledge from my peers and professors. I am inspired by the minds around me and small discussions–it’s just another piece of Soka that I am thankful for. I feel lucky to have the opportunity to even go to a four year university. It is a personal experience beyond just gaining intellect and knowledge–it is a chance in my life that allows me to grow and evolve and learn how to better become me. I wonder if many feel the same way.

Needless to say, my day progressed much more positively and I attribute that to my earlier saying, “you get what you give.” It is important to recognize this concept in life, I think because it is so true in all aspects of life. If I had let my negativity get the best of me, I might not have gotten up to go to class today and learned as much as I had. Instead, I put in the effort no matter how hard it felt at the time, and got such a great day out of it all! If you put in 80% of the work, you’re going to get 80% as a result. Simple as that.

One of my peers and I were complaining about how boring a certain class was earlier last week, but we made a mental note of how our perspective of the class changed after today’s discussion. Of course if you go into something with a bad attitude, your mind won’t let you progress and be open to new concepts. And maybe that is a stretch, but who knows… I know I have said this before on the blog but life truly is about perspective. If you want the best out of your college experience, you cannot just let the days pass you by. You have to be willing to put in the work, to take risks and make mistakes. Without mistakes or questions, what have you learned? Something as simple as asking a professor a question at the end of class may become your thesis for a paper. You never know if you do not try! I think at our age, we are fearful of being judged or criticized for what we say or how we present ourselves. I know I am a lot of the time, that’s for sure. But I am learning to not hold back, so that I can always be moving forward.

So I hope you can all “get what you give”… and see what’s in store for you each and every day! Thanks for hearing me out, guys–

-Katy

P.S. If you haven’t already, read Natalie’s guest post below! She’s an awesome example of what it mean’s to be a fearless TeenCP super star!

CP Resources & Surf City Run!

Hello!

I hope you’ve all had a great week, and are enjoying Superbowl Sunday! 🙂 Not too much going on this week, although I had a great meeting with members of UCP-OC this past Thursday, we were able to talk about the social media aspect of spreading awareness of Cerebral Palsy. I was introduced to a great resource for people with CP, www.aacpdm.org ….I have yet to dive into it much, but I skimmed it over and they seem to really hold a strong stance for promoting services and research for  CP and disabilities from childhood-on. I’ve noticed that a lot of the time, those with CP who are young children and adolescents unwillingly go under the radar concerning therapy and other forms of aid that can improve the quality of their lives. There are many things that factor into this problem, (money, insurance, reluctant parents) but most of all it is because people are simply unaware of the aid that is out there! So I just thought I’d just post this website for those of you who want to expand your knowledge a bit and just in case you ever want that extra opinion or go-to place about different forms of therapy, rehab, and treatment. For those of you TeenCPer’s who are feeling a bit hesitant to look into getting the help you think you need, go tomy resources on the bottom right and I think there is a great link for teenshealth on CP…you can even shoot me and email if you just want to talk too! I’m still learning so much about the different variations of CP myself, and how it affects all TeenCPer’s in all kinds of ways. This may sound a bt off topic but in Psychology we’ve been study perspectives and how we all hold our own vision of reality, and morals, beliefs, and values…and even a different perspective for how we see ourselves and others around us. It is very interesting to me. I’ve been working on trying to see myself in new ways..and it makes me wonder, how do you see yourself with CP? How does having CP make you feel most days? To what extent does having CP limit the way you perceive the world? No pressure to answer these questions, but our class discussions just really made me curious about the way others saw themselves and reality. 🙂

On another note, it is a tradition in Huntington Beach to host the Surf City Half Marathon (and Full) every Superbowl Sunday. There was about 20,000 runners on Pacific Coast Highway this morning running their hearts out! It is so inspiring to see, it makes me want to try and do something like that for a great cause. 🙂 One day…

Mom & Sara after they finished 🙂      

I watched my twin sister and mom run the half, it always makes me feel so proud and emotional to see someone I love work that hard. They did so well, and I was so happy for my sister because she has been training months to get around 2 hours (for 13 miles) and she ran it in 2:08! I wish so badly that I could run alongside my sister, but that’s just a dream of mine. :/ Don’t you ever have dreams where you are running, or walking perfectly normally? I do often, and it feels so real that I wake up so distraught and happy at the same time. I imagine myself running so effortlessly and flawlessly, like a ballerina on water. But then I have to wonder if I would be ther same person had I not been born with CP, and I know that I can’t imagine it realistically. I just wouldn’t be me, you know? Cerebral Palsy is a part of me that nothing could change that, not even my most vivid dreams.

Well that’s all for today, have a fabulous afternoon!

-Katy

Life Without Limits, A Perspective

Hey out there!

Wow, what a week this had been! I now have one more semester of high school and I am done! That is exciting to say. I have some great news, I posted it on twitter a few days ago, but this past Wednesday I was asked to go to UCP-OC Life Without Limits Center and be a part of a video on promoting awareness for CP! It was a great experience, and I’d like to thank Bonner Paddock for thinking of me, and Cathy Collins of UCP for welcoming me into the center and hearing my story. 🙂 I was so happy to share a bit about myself and TeenCP in the video, and I am excited/anxious/nervous all at once to see the final production! There is a gala that will be showing this viedo, of several people with CP of all different severities. I feel so lucky to be a part of this community. The objective of this video is to advocate the importance of rehab, and therapy for kids and people alike with CP. Through all the stories of the people with CP in the video from me, to Bonner, and to a few other participants, we hope to gain awareness as to not only what CP is, but what soures of aid is really out there for those who just feel stuck. At UCP-OC and other centers similar to this, they are struggling to get the funds they need to provide therapy and other aid to younger children no longer cared for by a the state, or a higher entity. At the gala, I hope to see that this video touches the hearts of some generous philanthropists! 🙂

After seeing the center, and talking with Bonner and Cathy, this only made me feel more and more passionate about becoming involved in the “disability community”  I would love to lead a hike, or run in support of UCP and other similar causes. I think it is so important to get the word out there that these kids and even people our age need all the help they can get. I saw at the center that these kids arent just doing strenuous therapy, but they are taking dance classes and doing art therapy-really anything to get their mind off the fact that they are learning how to cope and deal with CP. The simplest things like these dance and yoga classes are what means the most to these kids. I really believe that. In my past experience, I see that by allowing myself not to feel hindered by the way I walk is one of the best realizations I will ever come to (this also comes with the help of my parents always believing in me too). If we can help other little TeenCPers to realize that CP does not mean the world comes to a screeching halt, then I am there 100%. And really, the name of the center, Life Without Limits really encompasses the whole idea that perspective changes everything. I really am behind this idea, because that is the perspective everyone should work to attain. I know that I have it easier than those of you who have CP a bit more severly, but that still should never limit your potential. Just because we cannot be star atheletes, does not mean we can’t impact the lives of thousands of people! Take a moment out of your day to reflect on yourself, and I think you’ll discover that there is much much more to you, than your physical ability. It took me awhile to gain a stronger, more confident perspective of myself, but I know you’ll feel healthier if you just learn how to live life without limits. 🙂 

Can’t wait to see what’s in store! I’ve got a few ideas of getting the word out there, it’s just a matter of getting a few people together!

Other than that news, I have just been trying to sleep off my sleep deprivation from studying and fighting a cold these past few weeks. All is well now, a sigh of relief is in order! I hope everything is going well for you as we enter February…wow time sure flies. I’ll be on here more often now that school is slowing down, thankfully. I’m also excited because I might be getting a receptionist job at a beautiful little spa downtown. Hooray for expanding my horizons beyond the family buisness! Although I have to say that one of  our gyms, the Training Spot is looking fabulous with our new, doubly as big expansion. Congrats parents, I feel so lucky to know that you are always working and bettering your business to better our lives. 🙂

Oh! And really quick, for all you shoe savvy TeenCPers, I found the cutest pair of wedged heels that I can actually walk in! My friend saw them at H&M and begged me to try them on because she knows my whole issue with finding shoes that work with having CP. We were both so happy that they worked out, and I can walk in then after I give my ankle and foot a good stretch. 🙂 It will take awhile to become a pro at the whole high heel thing, but it is worth a try!

Alright enough rambling! Have a nice week TeenCP readers. 🙂

-Katy