Tag Archives: acceptance

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

A Myriad of Musings (over coffee & croissant)

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This morning I walked into the (quietest) bank and I must have made some noticeable noise with my flip flops because two people turned around and gave me “the look.” They looked at my feet, my face, and then back at my feet. It happens nearly every day but today these glances felt different. It was quick, almost undetectable by anyone else. They probably didn’t even realize they were staring a few seconds too long, but it was obvious to me. It felt a little disheartening, mostly because it is unwanted. I don’t like this kind of attention, as would anyone who deals with a physical disability or noticeable condition. I just want to go about my business some days but it is inevitable. It is just a part of having CP, I guess.

I don’t know why it bothers me so much. I know that it is human to be curious, interested, concerned etc… but there are some eyes that linger a little too long and that seems impolite. I wanted to look at both of them and say “what?!” As if to wake them up and help them understand that yes, people aren’t all the same. Our bodies all carry us through life in different ways. No, I am not in a wheelchair but yes, I have a disability. Yes, I look so “normal” but I have CP and I am not afraid to share that; it’s always been and always will be apart of me. I’m good with it, trust me. Can you be good with it too?

That is what I want to say to people sometimes but usually I will walk away if I don’t feel very strongly about it. At the end of the day, it doesn’t really matter but I think it is good to speak up in moments like these if it is warranted; it is an opportunity to education those who are ignorant of disability. It takes a lot of courage to do so and you might risk the chance of drawing more attention to yourself, but it may be worth it. You might embarrass that person and that is okay. A lot of people need to realize that to have a disability does not make us less capable of handling the opinions and reactions of others. Countless times, people have approached me and simply asked if I was okay and in response I would say, “yes thank you, I have cerebral palsy. My muscles are just tighter on this side of my body.” And I am putting into words what they have already seen! But they act as if they suddenly asked the worst question in the world, and tell me how sorry they are for bringing it up–as if I am as uncomfortable as they are with talking about it.

Well that reaction needs to change, but I wonder, will it? I wonder why things are this way in a world where there is so much diversity already. When will it be okay to exist in the grey area of our humanity? I mean this in terms of disability but also in other binaries. Think about it: we aren’t always normal OR disabled, republican OR democrat, black OR white, happy OR sad. Sometimes we are just fine, we become injured, we change. We are just bodies and odd mixtures of opinions, emotions, and spiritualities. We identify with ourselves and the world around us in this way, but is life really meant to be categorized in such strict boxes? (Yes, physical characteristics may need more clear definitions) but shouldn’t it be okay to be sometimes this OR that?

That is really why I like to talk about having a disability so openly because I believe it encourages empathy and understanding in others; even if it is to one person at a time, a one-on-one conversation does make an impact. So if there is a grey area to everything, I passionately support the notion that it is “normal” to fall in between these identifiers as we move through life. That’s just it– life is transitional. We go through stages, and phases, and we develop, and grow. Every day we wake up, we discover something new about ourselves and the world around us!

Much of this is my perspective from my own experiences and understanding of things I’ve read and discussed with others and you are free to dismiss it… but either way, I hope to have enlightened the way you think about having CP in the context of just being who you are, no matter who you choose to be today. Thanks for reading. 🙂

-Katy

Happy St. Patrick’s Day!!

Clovers, and leprechauns, and pinching…OH MY! :p

Hey guys…

Yay for St. Patricks Day! Hope you’re wearing green, if not I might have to come over and pinch you. :p

Whew, this week is already going by so fast! I started this challenge that my parents have going on at their gym called the Takedown Challenge– it’s like a Biggest Loser type thing that lasts 6 weeks, and you not only see how much weight you lose, but how healthy you become! It has been really great so far, my mom created all the recipies and cooks them for me too 🙂 The challenge is like a mini competition divided between the two gyms, with almost 50 people at each gym! I want my gym to win, so I’ve been hitin’ the gym everyday, and sticking to the menu..I even have a few friends doing it with me, so the support is so helpful and motivating. 🙂 Gotta to get ready for summertime fun at the beach! During the Takedown, we also have weekly hikes that we go on all around Orange County. I love them! Although I can’t run them anymore, I still enjoy being outdoors with everyone, and getting a work out that way. I feel so good after, nature really calms me down.  Soccer started as well, we had our first game on Saturday and lost 🙁 Most of our team didn’t really know each other all that well, so that is probably why, because we definitely have potential! It will be interesting to see how the season turns out, I will keep you updated. 🙂 My teammates are so supportive of me, it is such a comforting feeling to be accepted and praised. Most girls know of my CP already, but I have had to explain it to a few new teammates. Some already could tell I had it, which was so cool to me that they were familiar with CP! That is why I love playing AYSO, everyone is just out there to have a good time, no matter how good you are. My teammates are learning to play to my stronger side, and I am so grateful that they understand my capabilities, and aren’t hesitant to ask me about CP, or even play equally as difficult. That is a huge concept for me, knowing that I am treated no differently by everyone. We all just learn how to adapt to my “style” on the field (if I should call it that) haha…basically I can do short runs, small passes from the right, since I can’t run fast…. I also have poor balance and agility sometimes, but I have learned to really look ahead of the play to position myself accordingly, so I dont have to over-do the running up and down the field. So all is going well in the physical aspect of my life as a teen with CP! 😉 I have been wearing my brace, and making sure  stretch after and before I work out. Can’t afford to get injured with all that is going on.

Well I must retreat back to my homework filled evening, I will be on soon…I actually want to post about the diff types of CP soon, because I, at times,  feel misinformed as to what is out there concerning CP. I want to be the most knowledgable I can be when it comes down to something that affects me so closely! :p I think it will help me get a better grasp, when learning how to better understand my body and my limits, and how I can challenge myself. And, I will learn something about each and every one of you teens with CP! 🙂

Keep on reading. 🙂

-Katy