Cerebral Palsy Made Me the Strong Woman I Am Today

Dear Cerebral Palsy,

It took me a little while to fully grasp how you challenge and affect my life daily. I always had you. I just never knew what you were capable of or what paths you would lead me down in life.

At 19 years old, I can absolutely say I am not ashamed of how you may have changed my life and how you cause me to do some things differently from others. Cerebral Palsy, you’ve been a gift and have given me such a well-rounded perspective on life. I thank you.

But this has not always been the case. I have left sided hemiplegia, which means that only the muscles in the left side of body are affected by this neuromuscular disorder. I have never known my life any different than just having to learn how to adapt to certain situations more than other people do. I grew up compensating for my weaknesses by favoring my right side (as an aspiring physical therapist I am mentally yelling at myself for not giving my left side more challenges when I was younger, but young kids will be stubborn).

Like most people with CP, doctors do not ever promise a good prognosis. It must have been scary for my parents to hear that their daughter may never walk or have the ability to use the muscles in her left arm. I can’t even fathom how I would feel in that situation if I could have understood my circumstances then.

Starting from a young age, I liked challenges. I like proving people wrong. I learned how to walk when I was 3 years old. I have never known a life different than being a little more “spastic” than others: tripping over my own two feet all too often, and scraped knees and elbows being a signature look for me growing up. The term spastic refers to the type of CP I have- spastic hemiplegia on my left side: so when people call themselves or others a “spaz,” chances are you’re really not and you couldn’t possibly understand what it is like to lose control of your movements at times or not be able to get your muscles to work when you want them to.

The muscles in my left forearm, hand, and wrist were so weak when I was a child that my wrist would be curled up to my shoulder for most of the day until the wonderful time of day hit when I had my occupational therapy exercises. I began treatment with some of the best pediatric occupational and physical therapists in the U.S. at 18 months. I have to acknowledge the brilliant doctors, therapists, and eventually surgeons I have been blessed with being treated by. Without their compassion, their advocacy for my bright future and their knowledge of their medical specialties, I would not be where I am today.

I would not be a sophomore in college studying to be a physical therapist if it was not for my parents’ continuous support of everything I pursue in life. My father has been my coach in every sport I’ve played (and yes – I did play sports along with my “abled-bodied” friends!). He has always been there to give me the toughest love and has always encouraged me to follow my passions.

I attended regular school my entire life. I wore a plaid uniform to school every day with knee-high socks. But I wore a leg brace that would support my ankle and run the entire length of my calf, and most of the time I wore a wrist brace. I have never filed for any kind of government assistance, as is the case for many people in a similar situation to mine.

Because I was brought up in this so called “normal” culture, I did not notice my differences very much when I was young. I grew up attending school with the same people from kindergarten through eighth grade. I grew up with them, nobody ever seemed to mind my differences (but that would change as I transitioned to high school), and like I previously stated: I never knew anything different.

“You are retarded.” Those words still sometimes creep up on me every now and then. It wasn’t until high school that I really started to resent you, Cerebral Palsy. High school was a completely different environment. Those words and the actions of others ultimately caused me to lose a lot of the friends I thought I had. As painful as I that time in my life was, I look back on it now knowing it has made me a stronger person. I had a lot of anger built up toward the people who were saying nasty things about my body and how I lost my friends along the way.

Those words caused me to hate my body, my circumstance, and at this point in my life I sought surgical consultation from two very brilliant doctors. However, surgery is not a cure for CP. I still have some limits in mobility and function. And I always will. Most days I am not bothered by my condition or thinking about it too much. But there are many times when I must catch myself before I lose my balance, or my leg goes numb, or my wrist goes limp. And then I remember: I’m a little different. But I’m okay.

Four years after that seemingly life-shattering day in sophomore year, words can still trigger certain feelings of self-doubt on a smaller level, but I ultimately know that that falling out was for the best because I found out who was really there to support me. Although I have not stayed in contact with people from my high school, I wish them well, and if anyone ends up reading this, please know I forgave you a long time ago. Your misunderstanding of who I am as a person has caused me to ultimately rely on myself for happiness and the negative experience I had only wants me to help better the lives of children with disabilities all the more. I have my life all figured out. I hope you all do, too, and I am wishing you all the best.

So yes, CP, you have brought some unwarranted obstacles into my life that were never expected and could never be detected in any sonogram. But, without you, I would not be the strong-willed woman I am today who wants to make a difference for others and show them that their “disabilities” should be embraced and not shamed. I am a certified spinning instructor; I love challenging others beyond the limits they think they have. You are so much more than your limitations. Please know that.

I am currently advocating for the abilities of all people. No one should be discouraged by a diagnosis at any age. You are so much more than what you perceive as your limitations – whether they be physical, mental, emotional – everyone has issues. Empower yourself. Embrace your obstacles. Create a brighter future for yourself.

Cerebral Palsy, I see bright things in my future because of you…

Much Love,

Jessica Paciello

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.