Tag Archives: body

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

When you can’t do what you want to do… (and what that really means)

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Hey guys, I feel like this is going to be a long one tonight. Thanks in advance for reading.

Having Cerebral Palsy, this may seem like a constant pattern in my 21 years. The “cannots” begin to cloud my judgment, my happiness…and I am left to my writing devices so I can somehow exhaust some of this unease.

By now, I am confident in saying I “know my body well.” It’s capabilities, its quirky movements; its uneven strength and agility, poor muscle tone. But there is something dreadful and scary about the fact that for the past year and a half, my body has become unfamiliar territory due to injury and lack of the care and patience it needs to endure the physical hardships I have put it through. Pain medication equated to loss of appetite, rapid on/off weight loss/gain… lack of exercise equated to less mental release and more atrophy. This was all foreign to me and I didn’t take to these changes kindly. Speaking about my body–as a separate entity to my being–helps me express what I am feeling; and that is frustration and anxiety. Frustration, because who wouldn’t be frustrated by the fact that their body doesn’t move with the grace and finesse of an athlete or beauty queen? Anxiety, because I know that this body is the only one I have in this lifetime, and I seek to find its center of gravity, its own happiness and stability. When something like an injury happens, it upsets the balance of your natural movement, your inner-peace, and your over-all health. And to have CP and an injury that persists for months has caused much unwanted stress in my life (and in my family’s, no doubt).
I worry that I won’t be able to do the things I want to do, but I worry more about my inability to accept what I cannot change. I am done blaming myself and being upset over what I have done to inhibit my own physical progress. So what now? I suppose what I am left with are the things I CAN change, and the things I CAN do. I am in need of some strength to make those changes, however small and I hope to begin to focus on the positives. Although I will probably never run again, or play soccer again, I still can ride a bike. Although I will never love the way I walk, I still like the way I’ve learned to own my walk. I am not runway model, nor a star collegiate soccer player, but I can still be as confident and cool as one. I have so many other qualities beyond my body. My body is the first thing people learn of me, but it does not make me abject, or in the possession of a lesser body.

I have to remind myself of that when I feel like my body limits my growth as an individual.

What I like about having Cerebral Palsy is that it has made me more aware of my body and more aware about what it means to be a woman with a mild physical disability. I appreciate the “good” parts of my body more. My rather symmetrical face, my long legs, my womanly figure, my nice hands. Does this make me vain? How can I validate my femininity when I walk with a brace on my leg and an awkward stride? How sexy does that make me feel? These are the kinds of things I wonder about my body and its place in this existence and culture. I was raised respectfully, and hardly let the media and fashion industry dominate my experience of what is beautiful or feminine; but as I grew older in the company of my beautiful sisters and friends…as I went to high school dances and talked to boys, I realized I imposed my own insecurities, I created my own version of what it meant to be feminine and beautiful, and gauged them all by the things I “couldn’t do, or couldn’t wear” according to my Cerebral Palsy.

I tried (try) so hard not to have CP. I have to pull myself out of that zone, and remind myself that I do have CP, and that I must to value my body enough to care for it.  I still forget that sometimes.

No high heels meant I didn’t feel hot enough at dances, uneven hips and ugly feet… ha! How would I ever sit comfortably naked  in front of a guy? Do I love my body?  These are the things I put into question, and I was convinced of the negative effects of my CP on my body image for a good portion of my teens. Although they were very real feelings at the time, they now seem insignificant and I am happy to have gone through all that because I grew from these doubts. Who really needs high heels? Not me, you mean I’d be paying for discomfort? No thanks, I’ll stick to my nike frees and converse high tops. Who really cares about the appearance of feet anyway…they exist to get you from point A to point B. As for male attention and affection? That came with my confidence and my new found openness to someone else’s love for my body, and myself for exactly who I am. Who knew?  As I close, I am reminded by these reflections that my inner-peace will always lie within, and although I am always dangerously close to my fears and insecurities that create the unwanted  frustration and anxiety… I cannot stop thinking about how far I have come, where I will go, and how satisfied I am with the things I have done.  I rest easy in my resilience and ability to persevere through this. It helps to know I am loved by those around me, and that they have all helped guide me to communicate more, and to be a better version of myself. Thank you my loved ones! And thanks to you, for tuning in, hopefully I shed some light on any struggles that you too, are also facing with Cerebral Palsy.

Thoughts anyone? I would love to hear the male and female perspective on some of the topics that I raised here!

Take Care, Katy