Jordan: My Friend, My Inspiration

Yesterday was one of those days.

I was getting ready to leave for the football game (benefits of being in Gainesville- I can go to ALL of the home games) and I was trying to get a bag to take with me. It hung on a hangar next to my dresser, and even after I raised my wheelchair to its full height, I still couldn’t reach it. As I continued trying-and failing- to get it, my frustration and anger rose. I was trying to pick up a bag. Something so simple shouldn’t be so difficult. I shouldn’t have to fight just to pick up a bag.

I could have easily texted a friend and asked for help, but I didn’t, because of the principle of the situation. Eventually, after a few more minutes and more frustration, I got the bag- but not after accidentally breaking the hangar.

It’s moments like that, when CP makes a simple task virtually impossible, that I wish I could snap my fingers and make my disability go away. Those are the moments when I hate it, when I wonder why, of all the babies born the day I was, that I was the one whose umbilical cord got wrapped around her neck. Those are the moments when I question God’s plan.

But then, I thought about Jordan.

Jordan, the girl who immediately offered to help me learn to walk with crutches when I told her it was my goal to use them instead of my walker.

Jordan, the girl who understands what I go through in a way no one else ever has.

My friend, Jordan.

A couple weeks ago, my family and I sat tailgating outside my dorm when I saw a girl walk by, expertly wielding crutches. Even from a distance, I could see the strength and confidence she possessed. I want to be like her, I thought.

My dad noticed, too. “You could do that,” he said, nodding in her direction. “You really could walk with crutches. You should start practicing again.”

Apparently, God agreed. The next day, I saw her come in the back door. I’d been about to go into my room, but at the sight of her, I passed my door and instead made my way towards her.

“Hi,” I said. “I’m Robyn. I’m trying to learn how to walk with crutches. Could you help me?”

“Absolutely,” she said.

She spent the next half hour with me, giving me advice as I stumbled around on my crutches and tried not to bite the dust. I told her that I was having trouble finding the right rhythm- I would get ahead of myself, go too fast, and nearly trip over my own feet. “I had that problem, too,” she said. She held her crutches out to me.  “Here. Try mine.”

I did, and they were a game changer. Lighter than the ones I had been using, they were easier to pick up and put back down in time. Jordan said they’d made a drastic difference for her, too.

Hopefully one day I can stand in the sand with crutches, too.

Come to find out, that wasn’t the only thing we had in common. She also has cerebral palsy, we’re both in the College of Journalism here at UF, and we’ve even had one of the same surgeries. God, I thought as we talked, is amazing.

Jordan is a living example of what it means to be strong. She’s had ten surgeries, and over the years, transitioned from a wheelchair to a walker to a cane to crutches. Through it all, her faith has remained strong. In fact, she even credits the surgery that went wrong as what brought her closer to the Lord.

Jordan working hard in therapy.

Like me, she grew up bleeding orange and blue. Though she’d applied to nine schools, “as a die hard gator, once I got in (to Florida)  I couldn’t go anywhere else,” she says. The other added benefit of UF was its accessibility, a feature none of the other schools she applied to had. It made her transition to college easier, and now as a junior, she’s thriving. She’s a leader in an on-campus Christian ministry, and maintains her own blog, From3West, named after the hospital floor she was on when she started it. I’m a firm believer that everything happens for a reason, and I think God sent her to me as a gentle push to start working out and practicing with my crutches again. Jordan even said she would go to the gym with me- having gone through this herself, she knows what exercises to do and how to overcome challenges which may crop up.

Jordan rapping the orange and blue after surgery.

With her in my corner, this journey to becoming fully independent doesn’t seem as daunting or impossible. Now, I have someone to turn to when the days are rough or when a task is difficult. I have someone to get advice from, to learn from, to get stronger with. But most of all, I have a friend I know I can always trust count on. And that is what makes cerebral palsy a blessing: it connects me with the most incredible, wonderful, inspirational people.

I took Jordan to her first volleyball game Friday night.

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.

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.

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.

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

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.

Beauty Exists….

The Tim Tebow Foundation posted this when they announced my W15H, and I thought I would share it for today’s blogging quote challenge. 🙂

Sometimes I Wonder

Sometimes I wonder what it would be like to walk independently. I wonder how it would feel to stand up straight without being overcome with fear, and what it would be like to take a step without being confined by the mold of plastic braces. I wonder, are tennis shoes comfortable?

Sometimes I wonder what it would be like to take off running, whenever I want. How would it feel to have wind fly through my hair? Would it be exhilarating? Would I hate it? Would I feel like I was flying? Would I feel… free?

Sometimes I wonder what it would be like to be able to play sports. I live and breathe them- I wonder what it would feel like to be able to play. What would it be like, to run out of a tunnel surrounded by my teammates? What would it feel like to score the winning points in the final seconds of a game? What would it be like to be a part of something that means… everything to me?

Sometimes I wonder who I would be if I didn’t have cerebral palsy. Would I like the same things? Who would I be friends with? What experiences would I have? As much as I wonder and as much as I want to know the answer to those questions, the bottom line is this: without my disability, I wouldn’t be the same person. I wouldn’t have met the same people and I wouldn’t have done the same things. My disability has opened doors and given me experiences I otherwise never would have had, and it’s led me to people I love dearly and am beyond grateful for. Without my disability, I wouldn’t be… me.

Underestimated

Well. A week in and I’ve already missed two posting dates. That’s an auspicious start, isn’t it?

For tonight’s post, I thought I would share something I wrote about overcoming people’s perceptions of my cerebral palsy and consequently, the ability I have to do things. As you’ll be able to see, I don’t like being told I can’t do something. This is entitled “Underestimated.” Please let me know what you think in the comments!

I’m done with being underestimated.

I’m sick of people saying, “You can’t do this. You aren’t strong enough. You’re not ready.” For years, I have listened to this. For years I have been weak, and unable, and not what they want. Well, you know what?

I’m done.

I’m done with being told where to go, what to do, and how to do it. Let me make one thing clear:

I may have a disability, but I am not my disability.

Do you hear me?

I have cerebral palsy.

I have a walker.

I have braces.

But I am not those things.

I am strong.

I am the girl who endured three weeks in a hospital, who put up with needles, who was hit with a shock of pain every time she took a breath for days. I did that.

I am brave.

I am the girl who said, “I know it will hurt. Do it. It will be worth it.” I am the girl who stood in front of a crowd and poured out my heart. I am the girl who let go of my walker and stood, despite the fact that I was scared to death. I did that.

I am ambitious. I am the girl who let my walls down and showed him my heart. I am the girl who stood in front of a table and answered every single question they asked. I did that.

I did all of those things. I did them and I have accomplished the things I have because of who I am. Do you hear me? Those things happened because I am Robyn and because God is good, and for no other reason.

Oh. And one more thing. Don’t you dare tell me I don’t have what it takes to live my dreams. Don’t you dare say I’m better off stuck at home sitting behind a computer. Don’t you dare say I can’t do it. Because let me tell you one more thing I do: I prove people wrong.

She thought I couldn’t handle that day. I walked every step of that parade. I pushed through the pain and worked through the exhaustion. I did it.

She said I wouldn’t be walking for two months. I was back in my walker and getting around after three weeks. Despite the fact that it felt like knives were being pushed in my back and I could barely balance, I walked.

They thought I wouldn’t live. They told my parents I wasn’t going to make it and if I did, they said I wouldn’t talk, I wouldn’t walk, I wouldn’t think… they said I wouldn’t be what I am today, which is a strong, intelligent, beautiful young woman who has the potential to do whatever she wants to do.

If you only remember one thing I’ve said, remember this: I will live my dreams. Don’t you dare forget that.

Worth It

I’ll be honest: I have a lot to do before I’m fully independent. A lot. And when I went to bed last night, I was feeling really overwhelmed by it. A good night’s sleep didn’t take that feeling away. Unshed tears were a weight on my chest and I took a breath, trying to breathe through it as I wondered how I was going to climb this mountain.

Suddenly, that pain morphed into a quiet resolve to overcome this obstacle. I have to- I got in to my dream school, and I’m not going to lose the opportunity to live my dream. Will it be easy? No. Is the University of Florida worth it? Absolutely.

I think part of the problem is I’m trying to ascend the entire mountain in one day, and that isn’t possible. I’ve got to take it one day at a time and learn to not be frustrated with myself when I can’t do something immediately. I’m a perfectionist, so when I try something and fail, I beat myself up about it. Why I do that, I don’t know, because whenever one of my friends is trying something new or struggling with a class, I always remind them to do what they can today and be easy on themselves. It’s time I take my own advice.

I can do this. I know I can. I just have to work hard, go day by day, and remember that when I reach mountain’s summit and I’m living in Gainesville, it will be worth it.