Cerebral Palsy

The Thing About CP

For those of you who don’t know, cerebral palsy is a neurological disorder that affects movement and posture. For some, effects can be severe, but for others, it’s more mild. I’m blessed to be on the more mild end of the spectrum; for me, it affects the way I get around. I’ve used a walker and worn calf-high braces since I was little, and weekly physical therapy is routine.

I try to have the perspective that my disability is a way for me to inspire others and impact lives; it’s a platform the Lord has given me to spread His Light and Love. While that is the way I look at it, there are days when I lose perspective and end up crying, because the frustration has become too much. Like when I see my dad get ready to run, and wish I could go with him but can’t. Or when I wake up, and taking a step sends throbbing pain through my feet. Or on the days when I’m so tight, I feel like I can barely move.

But here’s the thing about CP. It is an it. It’s a thing; it’s not me. It doesn’t define me or who I am, and it may affect the way I get around, but it will not affect the way I live my life. I want to be known for lighting up a room; I want to be the reason someone’s day is brighter. I want to inspire others and make an impact, and be known for that. Not my disability.

So here’s the thing: I may have cerebral palsy, but cerebral palsy does not have me.

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Cerebral Palsy, My Writing

Who I Am

There’s a difference between the things I am and the things I have.

I have a walker that I use to get around, I have knee-high braces that give me the support I need to walk, and I have cerebral palsy, a disability which impairs movement and makes completing every day tasks a challenge. I have all of these things, but I am none of these things.

I am a Gator. From the time I was little, I have bled orange and blue. Back home, I was known for wearing orange and blue every day, despite living in the heart of Bulldog country. I didn’t care that I received daily commentary on it, with people asking if it was laundry day and informing me that I should be wearing something else- anything else. I love UF, and that love has created memories I’ll hold onto forever and relationships I will always cherish. That’s who I am. I am not my disability.

I am a fighter. From the time I was born, I’ve had to fight for what I have. I fought to stay alive for thirty days in a Pensacola hospital as a newborn. I fought to prove doctors wrong when they told my parents I wouldn’t walk, I wouldn’t talk, I wouldn’t be the young woman I am today. I fought to get here, overcoming obstacles, breaking walls, and turning a deaf ear to the people who told me I couldn’t handle the University of Florida, and that it would be better for me to take classes online. I am the girl who has jumped hurdles and proved people wrong her entire life, and that will never change. That’s who I am. I am not my disability.

I am a storyteller. From the time I was little, I have poured my thoughts onto paper, creating new worlds and bringing to life ideas that once only existed in my mind. But a few years ago, I began telling a different story: my own. I began sharing about my CP and the struggles I face, and I began to see the power that comes with being honest. Sharing my story has opened doors and created relationships that will make my dreams a reality. But beyond that, it has allowed me to do something else: make a difference. I share my story to show others that nothing is impossible and even the greatest odds can be overcome. That is who I am. I am not my disability, and it does not define me.

Cerebral Palsy, Florida Gators, thoughts

Where Gators Live

It’s beginning to feel real.

Earlier today, I moved into my dorm at the University of Florida. As I sat looking around at the tubs and boxes strewn about the room, I began to envision my freshman year. Watching football games at the Swamp on Saturdays. Going to volleyball games on Friday nights. Meeting new people, making new friends, and creating memories I’ll ultimately carry with me for the rest of my life.

My dorm highlights one of the things that makes UF special: its accommodations for those with disabilities. The dorms on my floor are completely handicapped accessible. All of my furniture will be adjusted so I can reach it, a tablet controls the lighting, thermostat, and shades, the bathroom is open and comes equipped with grab bars, and there’s a lift in the ceiling I can use to move around the entire room independently. Initially, I thought the lift would carry me, but I found out today that it would allow me to walk without using my walker. Two pieces sit snugly on my sides, lifting me up and easing the weight off my feet, thus allowing me to move freely. Now, instead of having to ask someone to get me a drink, I can get it on my own. The device will provide me with a sense of independence I’ve never had before, and who knows what that will enable me to do in the future?

Also in my dorm are two “bang bars”: vertical bars that perform the same function as the round handicapped buttons often seen outside stores and other public places. These, however, are more sensitive- all it takes is a tap of my pinkie and the door swings open. They’re everywhere- there’s one for my bathroom door and the door to the hall, one outside my room that I can use to get in, and they’re even inside the elevators. There’s one bar for each floor, and a bar that will open the elevator from the outside. Opening doors has always been a challenge for me. Doing so takes all my strength and effort, and even then, I still need assistance. But with these bang bars, I can go wherever I want to go with a tap of a finger. They may seem simple to someone just walking by, but they give me a special gift: freedom.

Dorms like mine must be everywhere, right? Wrong. UF is the only school in the southeast with this type of complex; the next closest is in Indiana (where it is entirely too cold). Several schools I toured weren’t options for me because they didn’t have the accommodations I needed to be able to go away to school on my own. Someone who knew this asked me once, “So if you weren’t going to Florida, where would you go?” And that’s the thing: I wouldn’t be able to go. I would be stuck at home, taking classes online. I’ve said this before: the effects of my disability are purely physical. It doesn’t affect my intelligence, and quite frankly, I think it’s sad that Florida is the only school with these kinds of accommodations. It’s the twenty-first century. An accessible university shouldn’t be a needle in a haystack. It should be as common as handicapped spaces in a parking lot.

Cerebral Palsy

The Power of My Hands

Physically, my hands aren’t strong. I struggle to pick up a penny with my left hand, and a therapist told me once my right hand is only half as strong as as the average eighteen year old.

When she initially told me, all I could think was that my parents were right: I had a lot of work to do. Once again, I felt as though my weaknesses had been brought to the forefront. But looking at it now, I can’t help but think that therapist was wrong.

My hands are the strongest part of my body. From them comes beauty in the form of prose and poetry; out of them pour my thoughts, my emotions, my fears, my dreams. They carry the key that fits the lock of my life. When I have a pen, anything is possible.

With a pen, I can create new worlds and bring ideas to life. I can bring people to tears and move their hearts in such a way that they feel compelled to put good into the world. I can create smiles, I can change someone’s day, I can form a connection between two people that otherwise never would have existed. Because of my writing, people have come into my life who mean the world to me and I’ve made memories I’ll cherish forever. Without the dynamic duo of my hands and my heart, my life experiences and the very person I am would be vastly different.

My hands might have physical weakness, but they are strong. They’re just strong in an unconventional way.

Cerebral Palsy

A Letter to the Little Girl Who Is Just Like Me

Right now, you are little, with cool AFOs (a sophisticated name for leg braces) and a smile that shows the spunk you carry inside of you. Despite the obstacles you face, you have a zest and love for life that will enable you to touch the hearts of everyone you encounter.

When I saw your picture on my Twitter feed the other day, I couldn’t help but be reminded of what I was like as a child. I too had blonde hair that I wore up in a ponytail, and I also wore AFOs- although yours are cooler. And just like you, I have parents who went above and beyond to make sure I was included in everything we did. Sometimes that meant parking in a handicapped parking space so I didn’t have to walk as far; other times, it was carrying me so that I could be a part of our Ruby Falls excursion. I saw myself in you, and ever since I saw your bright smile, there are a few things I’ve wanted to tell you.

One. You are beautiful just the way you are. Yes, your wheelchair and AFOs make you stand out, but that’s okay. They will enable you to make a difference. Your cerebral palsy has given you a platform to make this world a better place- don’t be afraid to use it. Share your story. Talk about the struggles you face, but also speak of the blessings you have because of your disability. People need to see that being disabled is not something to be sad about or sympathetic over, and you are the perfect person to tell them. Share your story boldly and honestly, because it needs to be heard.

Two. People are going to stare. Should they? No. Will they anyway? Yes, as much as you wish they wouldn’t. Don’t let their eyes break you or make you feel like you are less than they are. You aren’t. You are strong and courageous and unique, and if they don’t see that, it’s their problem, not yours.

Three. There will be occasions when people interact with you without seeing you. Like the people who stare, they will see the equipment you use and the condition that sets you apart. I want you to remember that your cerebral palsy sets you apart in the best possible way and that you are not a hindrance or a problem. Please don’t ever think that, and please don’t ever let their words hurt you the way that I let them hurt me. They don’t deserve space in your mind, and they definitely don’t deserve a place in your heart.

Four. You are living in a world that is not built for you, and you will come across challenges on the daily. Some days, you’ll be able to handle them with poise and grace, but other days, you will scream and cry and wonder why in the world you have to deal with all of this, when thousands of children are born every day without complications. And that’s okay. Your tears don’t make you weak. In fact, letting your emotions out instead of hiding them actually makes you strong.

Five. Yes, it’s hard, but along with the difficulty will come adventures and open doors that otherwise never would have existed. Your cerebral palsy will bring people into your life who will come to mean the world to you. When you’re having a rough day or wishing you could make everything go away, remember them. Remember how special they are and how much they believe in you. Their love will carry you through.

Six. If your journey is anything like mine, going to college will be a battle. You’ll have to spend hours on the phone, make a few spontaneous road trips, and explain to a few people that you got into your dream school and you are going, regardless of what they think you should do. There will be people who tell you that you can’t do it and that it would be better for you to take classes online for a semester. Don’t listen to them, and don’t give up hope. The same day you sit in your journalism teacher’s room and cry because it isn’t going to work will be the same day it does. Suddenly, the walls you’ve been hitting will come crashing down, and you’ll watch with amazement as everything falls into place. Follow your dream. You deserve to live it.

Seven. I keep saying “your cerebral palsy” because that’s exactly what it is: yours. Own that. Be proud of it. Yes, you are different. That’s a good thing. It will enable you to break barriers, blaze a trail, and make the kind of impact others only dream of.

Remember that you are special, and keep your sights set on the stars- they’re your only limit.

With love,

Robyn

Cerebral Palsy, Florida Gators, My Writing, thoughts

Either

She asked me

If I was going to wear my wristband in Gainesville

I said,

“Yes I am. They can deal with it.”

I may bleed orange and blue,

But it’s not the only university with a special place in my heart.

He’s a part of my life,

And I have no intention of hiding it.

You see, it brings a bigger issue to the forefront:

UF accepted me.

All of me.

My fears,

My hopes,

My scars,

My dreams.

And they made me realize something:

People either accept me,

Or they don’t.

They either understand that I have a passion for sports,

Or they’re not true friends.

They either handle the fact that I use a walker,

Or they’re not people I want to be around.

They either accept that my cerebral palsy has built me into who I am

Or they don’t deserve a place in my life.