Tag Archives: guest blog on 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

Cerebral Palsy & Fulfillment

iphone 063

Lance Pounds is a Law student in Boise Idaho. He has consulted for Oregon Health and Science University as a disability advocate and interned in Washington D.C. In his free time, he likes to hike the foothills near downtown Boise and travel.

This article on TeenCP is about fulfillment in the lives of young people with Cerebral Palsy. I believe it is vastly important to reflect upon our own lives at any age, but especially during young adulthood because there is always something to be learned or gained from any struggle that we face. Many of us with CP at times, have had some significant emptiness inside of ourselves and do not know the reason for this. When I speak of fulfillment, I do not speak of fulfilling employment or an intimacy that is shared by a partner. Many people, disabled or not, have those fulfilling aspects of their life and still feel a kind of dark emptiness. Fulfillment is a life affirming and wide reaching essence that (1) builds up our self-esteem and self-worth (2) makes us content and happy in any stage in life through the self.  In the way I speak about fulfillment, it cannot be achieved through material or relationships; but instead; we find fulfillment through an intrinsic motivation that urges us to search for people, places, or things that will help us feel fulfilled by allowing us to have an identity in them. It is the ability and the will to choose. Perhaps, this comes from building a digital CP (online) or actual CP community that we can become a part of to gain a sense of our self-identity.

It is safe to say that everyone feels powerless or misunderstood in his or her own life at some point. We, as humans, may experience our own set of insecurities; ours might just stem from our disability. The irony is not lost on philosophers or social scientists that it is natural to feel that when we get everything we want, we seem to want more of it, or want what we cannot have. But this essay is not about a critique of modernity, or psychology. It is meant to be a guide for people with Cerebral Palsy who do not have the luxury of living inside the norm or even, with independence. This guide points to a community of peers, like this one here and many likes TeenCP. We cannot resort to society’s definition of fulfillment because we are not fully ingrained in society. It is a literacy all of our own creation and application. We can, however, make our own crippled community and feel fulfilled  within this community of people with CP.

Walking differently, experiencing difficulty with speaking, being dependent on a mobility device such as a wheelchair ultimately sets us apart with each difference, however small. Most of us are dependent on some others for some kind of care. Most of our friends and family members do not have these types of significant impediments in their own lives and can only understand what we go through to a certain degree. What kind of life can we achieve if we are dependent on others for survival?

Not a very promising one—at least that is what many people might think. I believe otherwise. I know it is possible to function in life, and be happy and successful! For hundreds of years, people have judged, mocked, and deemed abject, those who do not appear or move with the same amount of symmetry and precision as other human beings.  One would think that with the 20th century advancements in medical technology, this bias towards arbitrarily notions about able-bodies vs. limited bodies would be discarded in favor of a kinder philosophy but it is not. It is easy to feel different, to feel inadequate, weird, and frustrated about our bodies because we were raised in a world where people with disabilities are not held with the same regard as anyone else who does not deal with any sort of difference. These societal norms and ideas about “lesser” bodies hinders a healthy development of self-esteem and self-confidence that one hopes to attain into their adolescence and well onto adulthood.

Self-actualization may not be realized or attained as easily when the person has a physical disability which cannot be changed or made better.  How do we define our lives when doctors view us as unfixable beings? We are in possession of  weak bodies that last for an indefinite period of time? Doctors provide magnificent services that allow us to be more independent; yet, in my opinion it is hard for them to look at the disability and the person co-dependently of each other. Some parents worry too much, some parents don’t worry enough—and it becomes more and more difficult to gain a healthy about of happiness when we are constantly in conflict with ourselves and those around. Sometimes, our caretakers who want to help their child develop into an independent, self-sufficient being actually impede on this period of essential growth and do not let their child learn how to deal with pain, struggle, and conflicts. While they have our best interest at heart, we must learn how to survive on our own no matter how hard it might be for our loved ones to just let go.

This is also why finding a community that embodies those same traits, goals and occupations is so vital to one’s fulfillment with a disability like CP. One form of learning is through experience. Therefore, learning and listening about what others have done before you may help us understand where to find our own sense of strength, confidence, and fulfillment.  My college experience was less than stellar because no one moved the way I do or spoke the way I speak. College is an introduction to finding one’s self. I found that I was lost. There was not a single person in the small Christian college that I attended that was spastic or ataxic.  I did not experience fulfillment because there was no community that could help me provide that. That emptiness that I first spoke about was very much a part of my life during college. I could not escape the glaring and overbearing normalcy. I needed to find my own CP community.

A community of crips not only allows us to be part of a norm, it helps us create our own set of norms and tendencies that everyone else experiences with their own bodies. After college, I floated around aimlessly, still reeling from what happened in the college years. I finally took an internship at a disability rights organization in Washington, DC.  It seemed like it was a logical thing to do.  During that time with the disability community, I was able to heal. The problems that I faced with speech and walking was match by co-workers speech and walking. By seeing them struggle in the same way, I was able to validate my own struggles. Sometime, I was caught staring at others who were struggling, and remembered the people who stared at me when I was struggling. I had done the same as the people who I learned to despise. Empathy, understanding, was working. It was cleaning out the tender and sore spots that allowed for new and healthy growth.

This type of community like the one in which I worked with, felt like a luxury but it also meant that I could experience happiness, fulfillment, and be an integral part of a group of people who understood me. It is not available everywhere, especially in rural areas.  If you have the fortune of having a United Cerebral Palsy affiliate organization in your area, there is no reason not to connect with them.  The same goes for other organizations such as Independent Living Centers which provide a clearinghouse for issues on employment, housing, and other services that are needed for independence. If you are a parent with a child with a disability, and that child is struggling with issues of self-esteem or social skill, you are not a bad parent. They need to see others like themselves to develop a healthy self-worth. The sense of belonging can erase self-loathing when there is nothing else that can.  Put frankly, being in a community of peers is the easiest way to discover fulfillment on some level.

When this luxury of community is not available, it might be a hard road ahead. Entrapment does not only stem from physical inability but also, social isolation.  Someone might not even understand what self-advocacy is about. It takes an enormous amount of empathy, and courage to give others grace when they unintentionally or ignorantly do something hurtful and you do not understand why.  Take my example: If a person with a disability has stared at other person with a disability it is harder to understand why someone may stare at the way you move.  This is not a problem that is easily fixed or remedied. It is a process and we all should be a part of this process because we can all provide awareness and education because we all experience CP differently.

If anything, there is always hope for those who cannot easily find and connect with a community of disabled people. If you are on this site, it means that you are looking for people that have the same or similar obstacles as you have. YouTube videos, PWD (persons with disabilities) blogs, and other forms of social media can never replace human interactions but it can provide a sense of comfort for those who need it. With all of this technology rapidly increasing and becoming increasingly popular, it is easy to stumble across YouTube videos or read blogs where you can laugh, cry, and talk with others who know exactly what you are going through on that day. These types of interactions help us all gain a sense happiness, and self-fulfillment that could not be provided elsewhere. Additionally, these websites and blogs can help inform society about how disabilities affect the body, and how everyone deserves and desires to be treated with as much normalcy and humanity as possible. This can be life affirming and we gain a certain amount a satisfaction in our life by going online when we cannot interact with our others who experience our own condition.

Let’s continue the journey. -Lance