To Surgery…And Beyond!

Hi TeenCP!! I’m so excited to be back and writing about my latest excitement. I am now finishing up the final months of my freshman year of college and have been introduced to the medical opportunity I’ve always dreamed of!

All my life, I was told that I had Spastic Monoplegia (a.k.a  tight muscles only in my left leg, complete with a limp, and balance problems that were given to me shortly after I was born) But a few weeks ago when I visited with a new surgeon, I was given a new look into really how my leg muscles were moving. It has been my goal in the past few years to reach my full potential physically and now, I was finally getting what I saw as the chance of a lifetime. Back in January, I did a “Gait Analysis” at a special lab in New York City. From this, the doctor would be able to see how exactly my muscles move and then decide what course of action to take so I can walk as well as possible That day was actually pretty cool-therapists covered my entire body in little ball-shaped sensors and used 3-D Motion Capture cameras to film me as I walked back and forth across the room. It was unlike anything I’ve ever done before, and what was even more awesome was the fact that I was utilizing the same basic technology that filmmakers use to shoot movies like The Polar Express. (Fun Fact: That’s why Tom Hanks looks extremely similar to his animated character!) As it turns out from the results of the gait analysis, my Cerebral Palsy can actually be considered “asymmetrically diplegic” because my right hamstrings an adductors are also abnormally tight. It was definitely a shock to have my diagnosis changed a bit after 19 years, but to be honest, it didn’t really bother me! Just hearing that a doctor could help me walk better was basically some of the best news of my entire life. Yes, I am actually excited about the surgery that I will be having at the end of May.

For the sake of keeping things “even” both of my legs will be operated on. My hamstrings and adductors will be released, meaning the doctor will “snip” them allowing them to relax. Together, this will not only give me better flexibility, but also prevent “scissor gait” and the turning in of my knee on my left side. Also, my left achilles tendon will be lengthened (by cutting the outer sheath of the muscle, allowing the tendon to expand) and this will help me walk “heel-toe” with a more regular stride. In total, five of my leg muscles are going to be operated on, and surprisingly I will be leaving the hospital with the ability to walk (using a walker), a short cast on my left leg, and splints to wear at night while I sleep. There’s going to be lots of Physical Therapy involved (of course) but I look at the process with a “no pain, no gain mindset” This Jersey Girl is hoping to be back on the beach as soon as I get my cast off…even if it means trudging through the sand with that new walker of mine! (How’s THAT for PT??) Also, I’m hoping to be able to eventually go ice-skating and zip-lining (two things I’ve never been able to do but have always hoped to try) once I gain my strength back! I like being able to look forward getting on the rink at Rockefeller Center or climbing to the top of a tree then flying through the air. It may sound a little crazy, but no one ever said that when you have CP, you can’t do these things!!

Since I’ve gotten the news that I’m finally able to have all of this surgery, I’ve done a ton of reflecting. How are you supposed to react when the thing you’ve dreamed about your entire life suddenly comes true? I now feel this awesome new sense of confidence and readiness to take take control of my body that I hadn’t necessarily recognized during my high-school years, and I think that’s one of the reasons that I’m not anxious about what’s in store for me. Maybe to those of you who have gone through this process before, I could be sounding slightly naive…but I can’t imagine being afraid of a medical  journey that basically encompasses all I’ve ever wanted for myself. One of my favorite quotes is, “Worrying is like a rocking chair, it gives you something to do, but doesn’t get you anywhere.” I know that with  all the support I have from my family and friends, lots of determination and a couple of chocolate milkshakes, I’ll be able to conquer this journey and come out not only feeling stronger physically, but mentally as well. Throughout my teenage years, I’ve learned that the difference in how you feel about yourself and your future all depends on how you look at things. More than that, I’ve been re-inspired to never lose faith that everything will fall into place. Just thinking about the day when I’m completely finished with my rehab and walking in a brand new way gives me butterflies-it is all the motivation I need!!!

Keep on keepin on guys!! :)

-Annie

Cerebral Palsy & Fulfillment

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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

Study Abroad, #CPChatNow & My Radio Podcast!

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Hey all,

It’s been too long since I written something substantial for the blog, wouldn’t you agree? I’ll admit, sometimes I see it as a chore, as something that I have to squeeze in my day; however, over the years I think my intentions for the blog have evolved, and it has become less of a daily diary, and more of a place where I can be of service to others, and share other’s thoughts who are searching to make those connections that I searched for in my teen years. I’ve learned that I just cannot force myself to write as often as I used to. While I enjoy it, at times it feels better to go outside and explore, be with my loved one…or simply just write my thoughts down in my personal journal, sit and listen to music outside and tune out whatever is going on in my mind that day. It is the experience of release.

Since being in Barcelona, Spain for nearly three weeks now I have begun to adjust and grow my own sense of familiarity in a new culture and language. In short, I am living with a wonderful host family and will be in Europe for the next few months, taking classes toward my Liberal Arts Degree at the Historic Universitat de Barcelona. I can’t recall when this institution was formed, but I have a feeling it is many centuries ago, long before the birth of my homeland! As you can see above, its Hogwarts-esque…how lucky am I to get to experience such a beautiful place! It is challenging of course, but I am growing used to being more focused, independent and just “okay” with the fact that I this is all new and there are going to be better days than some.

In a silly way, I am proud of myself for coming this far in life– I found a cliff (see above) on the coast of the Mediterranean Sea (wow!) this weekend in Port de la Selva, and I stared in awe of the beauty in front of me; halfway across the world from my family and home. I expected a tough arrival, but so far I am pleased with my level of spanish and how much I enjoy this city. I am able to get around pretty well. I brought my orthopedic walking boot for longer days, but I am only a 15 min walk to my school or a short ride on the metro. I was worried about how much I would have to walk because my foot is super tight lately and gives me trouble from time to time from my most recent fracture last year. But I am doing alright…although, It doesn’t help my body that I went from a solid 80 degrees in sunny California to a windy 50 degrees and rain, haha but like I said…I am adjusting! I actually went for a jog yesterday to this park nearby to do some stairs and situps ect… it felt good to get my heart rate up a bit in the crisp air since I got pretty sick over the holidays. It’s also been a little strange living in a big city, and it’s probably a cultural thing… but so many people STARE at the way I walk, to the point where some people stop what they are doing to take a good look at me as I walk by. What’s funny too, is it’s a lot of old people–you’d think by their 70’s they wouldn’t think twice about other people’s bodies. And really, I don’t mind it haha I find it pretty funny actually because it’s like the people have no shame here; they are curious and definitely want me to know it! I feel like especially being a young woman (I probably look foreign too) I stand out even more having a disability. It’s like people are confused why someone like me, would have CP and walk weird. That’s what makes it all feel pretty ridiculous to me. It’s like they’ve never seen someone limp before! I do have to say though, this city is VERY accessible. at almost every metro there’s an elevator, and I see handicap signs everywhere, the roads and sidewalks are clean and paved. It made me very happy to see. :)

Well, enough about me…how is everyone doing? What’s new in the CP community? I’ve really been enjoying these #CPChatNow Twitter nights every Wednesday (8 PM EST) check it out on Facebook here! It is a great way to really start stimulating awareness about the universality of CP. I think people are not only establishing great relationships, but really drawing attention toward the cerebral palsy community and how each and every one of us live our lives. It is so important to educate our society about CP, and this is such a wonderful tool to do just that. Thanks for creating this awesome virtual meeting place of ideas and feelings, guys!

Lastly, I totally forgot to post my radio interview podcast on the blog!! I put it on the TeenCP Facebook and Twitter but I never got around to sharing it with the rest of my friends. This was in November, and I was fortunate enough to have the opportunity to chat with a local radio station and co-host with UCP-OC President Cathy Collins. What a cool experience!! I felt pretty nervous, but I had a lot of fun and I got asked to intern with the station this upcoming summer! If you have a chance to listen to it (it’s a morning coffee and breakfast feel) please let me know what you think. click here to listen and choose United Cerebral Palsy of Orange County. Thanks for having us on, Scott and everyone at The Friendship Show!

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Before I go, here are some pics of my uni!

Have a great night everyone. :)

-Katy

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Getting back to it…in Barcelona

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El ensanche, (the expansion) near the Plaza de Espana in the center of Barcelona. What a view, I am so taken by this city,

Hi everyone!

Happy 2014–I hope everyone enjoyed their holiday and feels ready to take on a new year of school, work, successes, and discoveries. I know I am!

Just a quickwrite for now–

I am getting back into the swing of things after a nice break, I was pretty sick for most of dec-jan but I am back in action, and out of the country! I’m adjusting to life here in Barcelona, Spain for the spring so expect more content to come your way! I just got past my jetlag, and am improving my Spanish everyday since I am living with a host family. Thanks for all of your comments, thoughts, messages, and inquiries. I plan to spend some time responding to all of your emails, but I appreciate your patience. :)

Please, if you haven’t already, “like” the TeenCP Facebook page here for more frequent updates, thoughts, discussions, and pics of my journey in Europe!

Take care, Katy

Getting A Temporary Taste Of CP

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My name is Katelyn Place, I’m 21 years old, and I do not have cerebral palsy. Katy and I have been best friends for 16 years now. I met her and her sister Sara in kindergarten at the age of 5 and they have been two of my best friends ever since. To me the way Katy walks has never seemed odd or out of place. I have never once questioned the way she is because at 5, I didn’t notice it. We grew up together and she has always just been Katy. She never really expressed how her CP made her feel until we were older and the nagging self doubt of getting into our awkward phases of growing up and dealing with high school came into play. When one of your friends has to go through something like what Katy has dealt with all you can really do is express sympathy and feel for them. I hurt for her, but I had never walked in her shoes so I couldn’t really relate to the things that she was telling me. Until a week and half ago that is.

I have been experiencing pain in my right knee for close to two years now. I am a ballet dancer in my free time, I have been doing it on and off since I was 4 years old. So as soon as the pain started I made an appointment to see a doctor because I wanted to make sure that I did not tear something or injure myself. After MRI’s and X-ray’s and many, many misdiagnoses my Orthopedic Surgeon, Dr. B, came to the conclusion that I had Iliotibial Band Syndrome, something common in runners (I don’t run to save my life) and pregnant woman (this goes without saying, I was obviously not pregnant). So I mentally told myself  that I was fine and got right back into dancing like I was before. This was all fine and dandy until I noticed an odd growth underneath my knee. It started out fairly small, but as time progressed it got bigger and the pain came back even worse than before. So, back to the doctor I went. At first glance he told me that it was most likely a cyst on my patella tendon but an MRI would be needed to make sure. And of course I had to go back into that loud, cold, and time consuming machine. When the MRI came back there was nothing there. How something that could clearly be seen and felt from the outside did not show up on an MRI blew my mind. I sat in the room fighting back tears because I was in pain everyday and the physician’s assistant was trying to tell me to stay off my leg. Something as a bartender, culinary student, and dancer that was impossible for me. After I told her to go get Dr. B and I looked him square in the face and told him to take it out, my surgery was scheduled for November 14th.

I was nervous for the surgery because I had never been put under before or cut open. We could not do arthroscopic surgery because Dr. B did not know where exactly this thing was. So they wheeled me into the O.R., Dr. B held my hand in both of his as they put me out and told me that he would take good care of me. Doctor Bret Bachelor is one of the best Orthopedic Surgeons in the southern California area so I went under believing nothing less. An hour later I was in the post-op area and waking up from my surgery that turned out to not be a cyst, but most likely an extra piece of bone that grew and was pushing on my patella tendon. I say “most likely” because I am still waiting for the pathology report results, which is a little terrifying in its own right. Long story short, it shocked Dr. B and his assistant because that was not what either of them was expecting.

The recovery process has been hard and painful. This is where I got my taste of something that Katy has told me about but I had never experienced. A few days later I was finally able to take the bulky bandages off and change it into something less drastic. While I was at it I decided to move my knee because some stretching and bending would help my muscles not be so tight, and as a dancer my flexibility is everything to me. But, my knee wouldn’t bend. I was shocked. My brain was telling it to bend, but it wouldn’t budge. And then every ounce of me was screaming at my brain to bend my knee, to do SOMETHING! It still wouldn’t move. It shook like I have never seen any part of my body shake, but it didn’t bend an inch. So I cried and texted Katy because now I was able to understand just slightly, what she has to go through. I am lucky, my knee will heal and I will go back to bending it like before when it is ready to completely bend. I am also blessed to be able to make art with my body in a way that some people will never be able to experience. I have always looked up to Katy for her unwavering strength and her beautiful gift with words, but now I look up to her, and all people dealing with CP everyday, even more. Because now I have experienced what it is like to tell your body to do something and have it not obey. I am so very lucky to have such an amazing and strong friend like Katy and this experience has been easier with her just a text away when I was scared.

Thank you for reading my (long) journey that Katy let me share with all of you :) — Katelyn