Tuesday, July 25, 2017

How Publicly Revealing My Disability Improved My Body Image




“This is it; there's no going back now,” I thought, as I stared at the two words that typically struck fear into my heart.
Cerebral palsy.
My diagnosis -- the secret to which I had clung for much of my life -- now hovered above a published piece of writing.  A piece of writing centered around my personal experiences living with mild cerebral palsy.  A piece of writing that -- unbeknownst to me at the time -- would transform my perception of my body forever.
I, like many other women, have had a fraught relationship with my body for the majority of my life.  From a young age, I internalized messages from the media about the “ideal” woman’s body -- the type of body society prizes. Tall.  Slender.  Symmetrical. Able-bodied. Despite my understanding that one particular body type was perceived as the ideal, I have long found beauty in all bodies -- with the glaring exception of my own.  I have always been tall, long-legged and slender -- outwardly, an apparent manifestation of societal beauty standards -- but my body image was complicated both by internalized ableism and by the immutability of my life circumstances.  I had internalized so much ableism throughout my life that -- despite seeing beauty in other women with disabilities -- I personally felt I needed to be able-bodied to feel beautiful.  However, I was born with cerebral palsy, and I knew that no matter how hard I tried, I could never be able-bodied, and thus, could never attain the body -- and I presumed, the feeling of beauty -- for which I strove.  
Cerebral palsy -- a neurological disorder affecting movement, balance and posture -- can cause certain muscle groups to remain in a constant state of tension and weakness.  As a result -- due to muscle atrophy -- my affected leg is skinnier and slightly shorter than the other.  Although this subtle difference has rarely been apparent to other people, for years, it was the focal point of my bodily criticisms -- and my desire to conceal


it from others wholly consumed my thoughts.  Eventually, I arrived at the understanding that my fixation on my disabled body was not only unhealthy and unproductive, but also was actively holding me back from achieving my dreams.  How was I to resolve the years of internalized ableism that forged my negative body image?
I knew that if I ever wanted to make peace with my body and find solace in my identity as a woman with a disability, I needed to not only write about my experience living with cerebral palsy, but also to seek publication for my writing.  The prospect was daunting, as I had spent years hiding my medical condition to the best of my ability and attempting to pass as able-bodied.  However, I knew that publicly declaring my status as a disabled woman could allow me to love and appreciate my body in its entirety, so I forged ahead.

I began writing, but three sentences in, my breath caught in my chest and my heart raced.  I was on the verge of tears as I typed the two words that evoked painful, visceral emotion.
Cerebral palsy.
“I can't do this,” I thought.  “I don't want the world to know my medical history.  I need to stop writing.”
Several days later, however, the alluring prospect of a positive body image and a changed life drew me back in, despite my trepidation.  As I wrote, my fear and self-loathing was stripped away in tandem with my guise of able-bodiedness.  I felt completely vulnerable, but through the raw nature of my writing, I began to nurture a quiet self-acceptance.  As I edited, polished and prepared to submit my writing, however, I worried.  Am I making the right choice?  What if nothing changes?  Have I poured out my heart and soul in vain?

I submitted my writing; anticipating a future as a woman who would fully embrace disability as an integral facet of her identity.  I knew that for better or for worse, when my writing came out -- when I would publicly reveal my cerebral palsy -- my life would be changed forever.  Despite my uncertain future, I remained optimistic about the impact that sharing my experiences as a woman with a disability could have on my life.  I hoped that the years of ableism I had internalized would slowly dissipate, like petals in the wind.  I dreamt of a future in which I would no longer feel the relentless, societally-imposed pressure to attain a body I could never have.  I yearned to ignite a vehement, unwavering self-love -- a love so ardent it would last forever.

Five days later, I was surprised to discover that my writing -- my experiences with cerebral palsy -- had already been published.  I was keenly aware that now, nearly anyone could read my story -- and view my body in a new light.

“This is it; there's no going back now,” I thought, as I stared down at the two words that typically struck fear into my heart.
Cerebral palsy.
For the first time in my life, upon reading these words -- the secret I had held so close to my heart -- I no longer felt afraid.  I felt a sense of pride, not solely in myself, but in my body.  I realized that though to the outside world, my body may seem stiff, uncoordinated and unforgiving, my perpetually tense body possesses a powerful, invisible strength -- strength magnified by my experiences with cerebral palsy.  My body withstood years of therapies and medical procedures.  My body successfully recovered from orthopedic surgery.  My body survives the intense physical pain brought on by demanding 9-to-5 work.  The beauty of my body lies in its strength -- the strength to transcend the complications of cerebral palsy.

That night, I looked at myself in the mirror, scanning over my entire body.  I was clad in a T-shirt and leggings, hair down and slightly wavy, no makeup -- I was purely myself.  My eyes fell on my tense muscles, my uneven, off-kilter hip bones, my slightly in-turned knee, and the surgical scars permeating my foot.  For the first time in years, I did not criticize any aspect of my appearance.  In that moment, the quiet self-acceptance I had fostered through my writing reached a roaring crescendo and blossomed into unapologetic self-love as I realized the truth: Every inch of my body is beautiful. I am beautiful.

I stood in awe of my body, amazed by its beauty.  I realized then that by publicly revealing my cerebral palsy and allowing the world to understand my body in its entirety, I had relieved myself of the societally-induced pressure to attain a “perfect” body.  My writing was not only a window for others to view my life with clarity; it was a lens through which I could vividly see my own beauty.  In that moment, I was transformed by the power of positive self-perception.  In that moment, I ignited the ardent self-love for which I yearned -- a self-love I have vowed to carry with me for the rest of my life. In that moment, I decisively spoke the words I now fervently believe: “I am disabled, and I am beautiful.”

*Originally published by HelloGiggles

Tuesday, July 18, 2017

How I'm Moving Forward with Cerebral Palsy One Step At a Time


How I'm Moving Forward with Cerebral Palsy One Step at A Time

July 18, 2017

My name is Juliana Ruggiero; I’m 18 and have spastic cerebral palsy. My story begins in 1999. I was a fragile preemie who weighed only 3.10 pounds. My parents were not able to hold me when I first came out; I was taken away to the NICU as soon as I was born. I was on a breathing machine and closely monitored by a team of doctors until I was stable enough and my lungs were developed enough to function on their own.


Not even a few days into being in the world, I had a stroke and my brain bled inside. Doctors thought it was nothing, but the neurologist on call that night didn’t believe it and wanted to do an ultrasound on my head just to be sure. At just 4 days old, I got the ultrasound done, and the results were not what my parents and family wanted to hear. “There’s a black spot and a bleed on your daughter’s brain,” the doctor said. She paused and explained it was brain damage and I might have cerebral palsy, but only testing would confirm it.

The neurologist started with a basic test to see how much damage the stroke had caused to my body. She had me move my fingers, hands, feet and toes. The stroke had caused me to lose movement in those important body parts. I spent most of my time in the hospital for viruses and sickness. When I was finally stable enough, they thought I was going to be able to go home and “live a normal” life. But I was a tough baby, always crying, sick, on a ton of medications and fussy. No one, not even my doctors gave up on me. Without that amazing team of doctors, my family and I would not be where we are today.

I started going to routine checkups with the neurologist once I was finally released from the hospital. With a little bit of hard work and instruction, I was able to regain feeling in every place… Except for one. My legs. The stroke had done the most damage to my legs; they were motionless and I couldn’t move them at all. It still wasn’t confirmed if I had CP or not. About a month or two later, I had another ultrasound done to see if the black spot or bleeding went away. The results were still the same and my legs were tighter than ever.


 On January 7, 1999, we got the confirmed news from that same neurologist that would change all of our lives forever…
“It is confirmed that your daughter has cerebral palsy.”
What would that mean for us, for me?

An orthopedic doctor recommended a gait test be done to see what form of CP I had. So we headed to Hartford Hospital, where the gait test was performed. When I walked, the doctor noticed I was dangling my legs underneath me like “scissor blades.” He said I had a very mild form of the most common type of CP, spastic diplegia. The doctor also noticed when I sat on a table, my leg muscles wouldn’t relax and dangle naturally. He said to give it some time and if nothing changed, I would need surgery to correct the problem.

I started school in the year 2000. That year my health started getting out of control. I was always sick, in and out of the hospital again and again for countless ear infections and many other things. But in the year 2oo1 my family was faced with a tough choice. There was no progress with my legs, so the doctor decided I needed to have surgery to release my muscles and walk effectively with my walker.

So on January 7, 2001 just a few days after I turned 4, I had my leg operation. I was supposed to be out of school for two months per my doctor; that’s how long it would take for me to recover. But it didn’t go that way. I was back in school a week after having surgery and had no option but do my recovery plan while in school. After two months of stretching, frustration and tears I was able to get my casts taken off and was able to walk with the help of leg braces. I truly know without the branch of support back then, I would not have made it through this difficult time.

Today at 18, I’m thriving and stronger and heather then ever. I will be graduating high school at the end of this week. I’m headed off to to Gateway Community College in the fall. I recently launched my own blog called Juliana Living With CP: One Step at a Time. CP doesn’t define me or who I am. you should not let it define you no matter what people say or how “good” or “bad,” “mild” or “severe” it may be. I do have my “why me” days sometimes, but I don’t let it stop me from  doing what I want to do!

*Originally published on The Mighty*




Tuesday, July 11, 2017

Noelle's Story

Hi, I am Noelle Ford and when I was born I only weighed 1 pound 9 ounces. I live every day with Cerebral Palsy. Cerebral Palsy is caused by a non-progressive brain injury. I am almost 18 years old.


The worst thing about having Cerebral Palsy for me is having to use assistive devices to help me walk. I wish I could walk like a normal person.  Another thing that I hate about having Cerebral Palsy is when I am out in public people will stare at me. I wonder when people stare at me what they think about me, like what’s wrong with you? Why do I use a walker to help me walk?
The best thing about having Cerebral Palsy for me is that I am so positive and such a happy person. Another best thing about having Cerebral Palsy for me is that I have very strong faith in God. My faith in God is very strong because I was not supposed to be alive and now I am here today. Thanks to God!!!


In conclusion, living with Cerebral Palsy there is an every day battle that I have to fight. Over the years I have learned to fight some of the every day battles to their death!! I think there are more advantages than disadvantages to living with Cerebral Palsy

A Thought For Your Day

  The Lord placed this thought on my heart last night, and I felt like sharing it today.  It's easy to become so busy serving the Lord ...