Tag Archives: cerebralpalsy

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

CP Awareness Day Video Project!

Hello All!

Well, as most of you may know, March is CP Awareness month! But today is even more special– March 25th is the 3rd Annual CP Awareness Day here in The United States! To commemorate this event, I’ve put together this video compilation for those in need of a little reassurance about their bodies & to express what we deal with on a daily basis with a physical disability. Thank you to the lovely ladies who were brave enough to share bits of their experiences with cerebral palsy, I am so grateful & couldn’t have done this without you! Enjoy… 🙂 And please feel free to share!

-Katy

(PS. Please check out more fun stuff from TeenCP on Facebook!) Watch this video on YouTube

CLICK HERE! Reflections on Cerebral Palsy for CP Awareness Day 2016

“Give a girl the right shoes and she’ll conquer the world” – Marilyn Monroe

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Hi everyone,

I’m Jessica and I’m 23 years old. I was diagnosed with Cerebral Palsy when I was 4 months old in a unique way. I got pneumonia which caused one of my lungs to collapse. When that happened I lost oxygen, and as all of us know thats one of the ways to get CP. I was placed in a coma for a week, and eventually I became healthy again. From a young age I had to become a fighter. Cerebral Palsy has a funny way of forcing you to get thick skin. Eventually you learn to let the looks and comments roll off your shoulders, because in my head those people who say things don’t matter. I have a mild case of CP that affects me from my waist down on both legs. I got the percutaneous lengthening surgery twice. Once for my hamstrings and the other for my achilles tendon. The surgeries were life changing for me, it gave me a chance to have loose muscles along with stretching everyday. Also for the past two years I have been getting botox injections in leg muscle to help with my spasticity. Im loose and flexible now with very little spasticity but still walk with a limp.

When I was young I never thought twice about it, I never knew anything was wrong until kindergarten. My Cerebral Palsy never held me back, I did everything I wanted to do. It might have taken me a little longer, but I did it and thats all that matters in the long run. I pretty much came to terms with all things related to Cerebral Palsy, Physical therapy, stretching, gate training, strengthening exercises, but the one thing I can’t come to terms with is SHOES! I’m sure you all can agree with me having CP and shoe shopping is not fun! It’s the one type of shopping I dread and try to put off. After having years of experience of shoe shopping with CP I think I got it down to a science. I have some shoes & tricks that I want to share with you all.

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Sneakers– I am definitely a Nike girl! Although I am picky with the weight of the sneaker, I usually get the sneakers used for running, I find that these are not to light but not too heavy. Right Now I love the Nike Dual Fusion line.

Slippers– Even though slippers are meant for comfort it’s still important to keep your feet in the right position all the time. I am in love with the brand Vionic! They have an arch and a heel cup, they are made for people who need medical footwear. I have the Relax Luxe they are my favorite.

Sandals– I’m definitely the most difficult with sandals, It took me a while to feel comfortable and confident in them. I have two brands that I will only wear they are Bare Traps & BOC. For me finding a sandal with a sneaker like bottom works best. I also make sure the sandal has a ankle strap for extra support. When I walk in the BareTraps & BOC sandals it’s almost compatible to sneakers.

Sandal Tips– I hate when my foot slides around in my sandals.It is impossible to wear an orthotic with some sandals. My fun tip is I buy the Dr. Scholls gel heel cushions and trim them to fit my shoe then glue them to the inside by the heel & the toes.

Boots– Again I have to say I love the brand BareTraps & BOC for boots. If I do stray away from those brands I always make sure the the boot is flexible & has a rubber bottom so you don’t slip! Again I look for that sneaker like bottom for comfort & I make sure I can slip in my Orthotics.

Heels– Wearing heels is a struggle but lets be real having CP and balancing on a stiletto is out of the question for me, and thats something that took me a long time to accept. I would give anything to walk in heels and be confident and comfortable, but thats not always the case. I am not a toe walker so feeling the pressure of being pushed onto my toes gives me anxiety, I feel like I’m going to topple over. As of right now I only wear a heel with boots or booties, I normally wear a low heel about 1 inch to 1 1/2 inch. I make sure they have a rubber bottom and is a flexible shoe. Right now I have the Kenneth Cole Women’s Riding Boot. I love them and I’m very confident in them, and thats all that matters. I recently have been gate training in wedges so I can wear them outside and not only in the comfort of my house.

Orthotics– I wore day and night AFOs until I was 17 years old. I am now able to buy over the counter orthotics. I wear them in every shoe except for sandals. Two of my favorites are Vionic and Spenco.

Now, I am definitely not a Doctor but these are just some shoes and tips that work best for me. Also I would like to thank Katy for making this blog, it’s always nice to relate & talk to people who are going through the same thing as you!

xoxo Jessica

You Are Not Your CP

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Hey TeenCP!

My name is Emma, I’m 17 , and  I’m a Senior in High School.

I was diagnosed with CP when I was born.  I have a diagnosis of Spastic CP which basically just means that my muscles are tight.  I have trouble keeping my balance, and I do have a slight limp on my right side. I try not to let CP get in my way though!  In and outside of school I participate in Drama! I’ve been in a couple of plays and a couple of musicals. I love it, for me, being on stage is like this massive adrenaline rush!

I first started getting involved with musical theatre when I was in Elementary School by taking musical theatre classes at a local dance studio.  I was nervous to go out on stage because I walked differently than everyone else, but that all changed when I went to High School.  My sophomore year, I heard that the drama department in my school was putting on a children’s musical and the auditions were open to the whole school. I talked with my parents about auditioning and they were very supportive of my choice to audition. I knew some people that were in drama already but that was only like two people out of twenty auditioning. The day of the audition, I was REALLY nervous but everyone there was extremely nice. I found out a couple weeks later that I got a part in the play and was really excited to start rehearsals.

As rehearsals progressed and we began running the show at full length, I realized how fast things (Set changes, costume changes, dances, etc.) went. The director had an  idea to make one of the scene changes I was in faster .  She was going to have someone carry me on and off stage. Now that I think about it, I was a little nervous about it. My first thought was that I was doing something wrong, but I realized that she was just trying to help me, and the scene, go faster.  I think from then on my “drama family” has been really supportive and has seen past my CP. One of the things I really want to  tell you guys that read this is you are not your CP , you can do anything you want to, and I think that Katy has done an awesome job of sharing this with all of us.

Okay, I know that sounds kind of sappy, but, I didn’t realize all of this for myself until I actually started writing.  I hope this is going to help you guys out in the future!

Emma

I spent a weekend in San Francisco and left my walking boot in a taxi cab…

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….I felt as if I was consciously aware that I was about to become devastated in the next moment… The next few hours awoke inside of me, a very overpowering sense of helplessness. I was not in control, and like anyone else with cerebral palsy, control (whether physical or mental) is something we like to hold onto– if we are able to experience it, at all. So here I was, standing against this wall in my friend’s apartment about to be painfully aware that I had made the unfortunate mistake of forgetting the absolute most important item of my trip to the city…

Maybe it is my CP that manifested the following metaphor but nonetheless, here it is:

You know how there is the smallest moment of sheer panic when you fall… well, I’ve recently discovered that this moment briefly consists of the following two things: the second you realize you have lost your footing, and the second you understand you have actually fallen onto the ground. (And no, you were not pushed over, nor did you trip over any thing–you have simply, fallen.)
There is always those two moments that occur in every fall that I have had.
But there is also this “in-between” that slows the moment down and you find yourself almost saying out loud, “this is really happening, okay, I am falling…” Accepted. Well that is what I experienced when I realized I left my walking boot in a cab. I had fallen hard and that moment of in-between was anything but gracious and forgiving.
That night, my circumstances also found me unwell, as I had to sleep on the hard wood floor of my friend’s apartment because her bed had yet to arrive to her new place. “How lovely, no boot, no bed… My body was in for a good one tonight!” I thought. I woke up with sore shoulders, throbbing feet from the day before, and my spirits were low. However, my earlier sense of helplessness from “the fall” was momentary and did not stop me from calling the yellow cab company to insist that they track down the cab that had my boot. I had little hope that I would find it, but my logic persisted that it must still be out there, sitting in the trunk of that cab we took from only a few blocks away. How hard could it be, with all the information I had given them? By the afternoon, I still had not heard from the cab company after about five phone calls to the lost and found line. They must’ve known who I was already, but I didn’t care. They needed to know that my boot wasn’t about to be tossed away. Well, for the next two days in the city, I was without the walking support I needed to combat those concrete hills and fast pace stride that was necessary for street walking. I was truly devastated as time wore on; that boot was my sense of individual mobility and I grew bitter and frustrated without it. Anyone with CP can relate to this feeling, I am sure. I need this boot not only for orthopedic support that CP sometimes requires, but also because my foot is still healing from surgery weeks before and I knew all of this walking could cause a setback for me. I was worried. The cab company lost & found was closed over the weekend and so my trip was shortened by a full day in the city due to having lost my boot.
Looking back only days later, well rested and calm, I am at the point where I am just happy to be out of that situation; but my boot still hasn’t been returned to me or my friend and the likelihood that it will be feels less and less.  I’ve learned to be a bit more responsible about my items, but to also not let something like that get me so down just because the pace of my trip has changed.  It was just…an experience, one that I will never forget, and one that made me more resilient. And yes, for those who are wondering, I have a back-up boot here at home, but I still want to put myself at ease, and get that boot back in my possession! It is now Monday morning, and I am preparing myself for a day of phone calls to get that boot back…. Wish me luck!!
Have a great week TeenCP friends, I will be announcing our next guest blogger very soon!! I hope everyone enjoys their last few weeks, or days left of summer break. 🙂
Take care, Katy