Tag Archives: physical therapy

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

Marching Band with CP (or, why walking in a straight line is harder than it looks)

Hi! My name is Natalie, and I’m 17 years old. My case of CP is a little strange- when I was born, it was officially diagnosed as mild spastic diplegia, but over the years, as I’ve grown and been to different doctors and hospitals, it’s been called everything from hemiplegia to triplegia. Basically, the bottom line is: it mostly affects my legs, although my left side is worse than my right, and I do have some minor problems with my left hand. I was also born a quadruplet, which means that I have 3 other siblings who are all the same age as me, which is probably how I wound up with CP in the first place. My siblings are amazing. They’ve always kind of looked out for me, and are always there to back me up and offer help if I need it.

Throughout the years, I’ve had several surgeries, done PT and OT, worn leg braces, and had serial casting and Botox injections. Despite all of that, I never really felt limited by anything- my parents were always supportive and let me do pretty much whatever I wanted, and all I pretty much cared about was that I could walk and run well enough to keep up with my other siblings. I never really felt like I had a disability; it was just my life, and it was normal. All of that changed right around the time that I entered high school, when I had a big surgery and was stuck with casts on both legs for about 6 weeks. Going through rehab was a long and arduous process, and it made me think a lot about myself and what I had been through. Suddenly, it just hit me over the head that most people haven’t had 3 surgeries by the time they’re 15, or had to learn how to walk again, or have occupational or physical therapy. At the time, that difference felt like a curse, although I’ve now come to see it as a blessing. That was when I stumbled upon TeenCP. Reading all of the posts made me realize that I wasn’t alone. It felt like a huge weight had been lifted from my shoulders; for the first time, there was someone who had been though almost exactly the same things I had, who knew what I felt like.

But anyway, what I really came here to talk about is my experience with CP and marching band. At this point, you’re probably thinking something along the lines of, “How can you be in marching band if you have CP? Isn’t that the kind of thing where it really matters how you walk?” To be honest, I don’t really know what I was thinking when I signed up to join the marching band. With my CP, signing up for an activity that requires a lot of control and coordination, where judges strictly critique the way you walk, probably wasn’t the brightest idea. But at my school, if you wanted to be in any band, you had to join marching band. I had started playing the flute in 7th grade, and found that I really enjoyed it. I didn’t want to give it up after only two years.  So that was how I somehow found myself  standing in an asphalt parking lot, on one of the hottest days of the year, listening to the drum major bark out instructions and hoping to God that nobody noticed my limp.

Actually, the first couple of days at band camp went fine. Some people stared at me awkwardly because of my limp, but I just kept on going. Marching band was a new experience for me- never before had I focused so closely on how I walked- and it was sometimes frustrating to try and get my muscles to do what they were supposed to. I would try to execute the marching steps the directors showed us, only to realize that what my foot was doing wasn’t anywhere close to what everyone else’s was doing.

Marching band turned out to be way more complicated than I thought it would be. Besides going out there, playing some music, and wearing a dorky hat with a feather in it, I learned that not only did you have to walk in a straight line, you had to have your feet hit the ground on the right counts, take something called “an 8 to 5 step” at a “60-40 lean”, and arrive at a certain “dot” on the ground that was “3 outside the yard line and 4 behind the back hash.” Oh, yeah. One more thing- you actually had to play an instrument while doing it. Sounds easy, right? Wrong. I was hopelessly inept at marching band- marching and playing an instrument seemed to involve some level of coordination that was beyond my control. I was forever on the wrong foot, in the wrong place, playing the wrong notes. I ran into at least two people on a daily basis. So much for hoping that no one would notice my limp.

And I had another reason to worry: at my school, marching band wasn’t an all-inclusive thing. You had to try out, and only people who could march correctly made it into the contest show. Everyone was technically in the band, but if you weren’t in the contest show, you could only march at the football games. At that point, I didn’t care whether I made it to the contest show or not. Marching at football games was just fine with me. I was just hoping that nobody noticed my awkward gait and told me, “What are you doing? You don’t belong here! Whatever made you think you could be in the marching band?” Silly, I know, but true.

I knew the gig was up when on the third day of camp the band director approached me and asked me my name. He had been watching, and I knew he could see my limp and awkward style of marching. I was pretty sure that I hadn’t made the contest show at that point, and as it turned out, I was right. In the end, though, everything turned out okay. I talked with the band directors and explained my CP, and they offered me some choices. I eventually chose to continue to march at football games, and help out with props at the contests, and I’m so glad I did.

With marching band, the focus is really on paying attention to the details, making sure everything lines up and that everyone looks exactly the same. With my CP though, I was different; I stood out like a sore thumb, which was especially embarrassing when the directors played video recordings of our performances and critiqued what we did wrong. I would cringe internally whenever I saw myself on screen, lurching into the picture like a drunken elephant while everyone else executed perfect marching style. Sometimes people would come up to me after games and tell me that I was such an inspiration; at first, it made me uncomfortable, but I’ve gradually learned to take it in stride. I eventually realized that most people congratulated me because they tended to admire me for trying, and not because they felt sorry for me.

Although it’s sometimes been tough, I’m glad I chose to do marching band. It’s given me new friends, a new perspective, and a new sense of confidence in life. I used to be so much more self-conscious about the way I walked, and I would get nervous at the thought of marching in front of hundreds of people, but not anymore. I might not always be on the right foot or doing the right style, but at this point I’ve learned to be confident in who I am. So what if people stare? I guess sometimes I march to the beat of a different drummer, but having CP has taught me that it’s okay to be unique.

A lifelong reality

Hi Guys!

How is your week going?? Friday is almost here 🙂

So the other day my mom asked me if I have been wearing my brace at night, and for some reason I said yes even though I haven’t. I don’t know why I lied but I feel like she would be disappointed in me if she knew I haven’t been wearing it. Now I think to myself, “why did you lie? Why aren’t you taking care of yourself?” I know that answer, I just refuse to take action sometimes. For my entire life I have been nagged and told what to do about stretching and things like that, and I think I am just too stubborn to care about what everyone tells me. I also think  that I just tried to “ignore” my CP because I want to pretend it’s not going to effect me. It’s like my mom says, “just like you brush your teeth everyday, you have to stretch.  It’s just a part of your daily life that you have to do.”  Yet sometime I fail to see that and apply it to my life. It’s frustrating that I haven’t taken care of myself, and I take full blame, because soon I will be undergoing either a surgery or serial casting and I know that if I didn’t neglect physical therapy and take better care of myself, I wouldn’t be feeling so disappointed in myself. I wish when I was younger I knew that in a few years it would be hard for me to run and do simple tasks like walking up stairs or keeping up with my friends when we go places. I want to have control over my own body and make my own decisions. But in a sense, I had no control over my body because I completely stopped any form of treatment for about five years and it has now finally caught up with me. I now have to face reality and deal with my CP day by day no matter how annoying or scary it may be. Even though I can’t play soccer this season because of my upcoming surgery, and it will be a lifelong process, I know it will be worth it in the next few years of my life.  But I’ve realized that I just have to keep moving forward from here and not let my past effect me anymore. There is no use in crying or getting angry at myself, I would be wasting precious time pitying myself for things I could’ve prevented.  I know that if I convince myself I want to be healthier and improve my mobility skills, I can do it.  I think that by keeping an image of my future and how bright it could be in my mind is a key form of motivation. Also, for those of you who have CP and do read my blog, I want to be able to share my successes with you. Not my failures.  Do any of you feel this way about your CP? I hope that I changed your view on your lifestyle a little bit, maybe you need to stretch more so you dont have to get a surgery when youre 17 like me…or maybe you just want to share your successes with me! I would love to know what works for you, do you stretch, run, do any treatments that had helped improve the quality of your life? What is your source of motivation to keep taking care of yourself?

And for all you parents out there, mom’s AND dad’s included – I want to personally thank you for raising your kids with CP to the best of your ability. I know you may experience the stubborness to do PT, or you may feel like you have to focus all of your attention on your child. But one day they will thank you for all your love and dedication you show your son or daughter to give them the best life anyone could ask for. You truly make a difference. Like me even a year ago, they may not realize that the constant nagging to stretch, do PT, exercises, ect.. are out of love….. but one day they will. And they will appreciate you for the rest of their lives.

Mom, and any of you who support me and my CP problems, thank you for all the time and patience you have put towards my life. I could not have asked for anyone else to stick by my side through thick and thin. I love you all for that and I hope to make an honest effort to really work at my PT. I want to make you proud!

As of now I have no idea how my surgery or castings will go, but my ultimate goal is to just feel happy about myself and stronger both physically and emotionally. Thank you for listening in on my life. I hope to hear some of your stories or struggles because I would love to relate!

Have a great weekend, I’ll be on soon 🙂

Stay happy & healthy.

-Katy