Erin Noon - Cerebral Palsy Advocate


Erin is a 27-year-old woman with cerebral palsy who uses a walker regularly (and a wheelchair occasionally) who has worked in the public and private sector.

RELATED VIDEOS

Live Video: Karin Willison - Disability Advocate


Meet The Mighty: Karin Willison is a writer, blogger, and advocate who has cerebral palsy. She works as an editor for The Mighty and has a blog at FreeWheelinTravel.org, where she chronicles her experiences living and traveling with a disability.


Woman watching beautiful sunset.

What I Learned When I Stopped Trying to Hide My Cerebral Palsy


I told myself I needed to suck it up and get over it. I was just reading my old IEPs (Individual Education Plan) in the name of university research. And yet, as I read the front page of my primary school plan, I was still struck by an acute sense of difference, tempered by thoughts of how strange it was to see myself summarized in a little bold box of “strengths.”

According to the perennially well-meaning teachers and support staff with whom I (very reluctantly) worked, these were the things I was good at: I was an avid reader and enjoyed creative writing, I liked speech and drama, I had a good memory, I was an enthusiastic learner (apparently my enthusiasm equated to high achievement) and finally (I’m direct-quoting here), I was aware of my limitations, but I would always have a go.

In my 10-year-old mind (around the time when these IEPs were a thing I didn’t really want to know about, talk about or acknowledge in any way), that was possibly the worst backhanded compliment ever. I took umbrage at the implication of incapability cloaked as a “strength,” and it was from that point forward that I decided to adopt a stance of steadfast denial whenever my teachers looked to involve me in setting goals for my IEP. But some days (especially in high school), my unflagging desire to reject all offered assistance in order to maintain my façade of conformity grew harder to sustain. My legs would ache from the many stair climbs I traversed throughout my day, and I’d get upset – not visibly, obviously, because that would give the game away – when I couldn’t draw a perfect circle with my compass, or trace and color my map with the same precision and attention to detail as everyone else. But for me, maintaining that veneer of “normalcy” trumped any pain or frustration I experienced.

I have just completed my undergraduate university studies, and it was only recently, when I was preparing a paper for a national education conference (take that, teachers who pigeon-holed me during school!) that I autonomously chose to “expose” my cerebral palsy to a wider audience than my family and school teachers. And the reactions were nothing like I was expecting. That fact that I have a disability was (blessedly) not a big deal to my university lecturers. They didn’t look at me like my CP is something contagious. They didn’t look at me with that calibrated combination of pity at my “situation.” And they didn’t look shocked that I have a disability, but I look nothing like people with disabilities are “supposed” to look. And it has only been since then – at the ripe old age of 21 – that I started to feel like I could be defined by more than what was in that little bold box.

We want to hear your story. Become a Mighty contributor here.

Image via Thinkstock.

Woman stumbles on a staircase.

The Ups and Downs of Falling as a Person With Cerebral Palsy


I have more scars and bruises on my body than I can count. The first fall I can remember was when I was 4 years old. I busted my knee open while running across my grandma’s uneven sidewalks. It took over an hour for the bleeding (and my howls) to stop. Sixteen years later, I can still trace the indentations on my knee.

Ask anyone with cerebral palsy who walks — falling is a part of our lives. It hurts, it’s not glamorous, but it’s going to happen. And if there was a way I could catch myself before I fell, trust me, I would. Many people casually ask,“Oh, what did you trip over?” With a shrug, my answer is…“My left foot.” Because my calf and ankle muscles are constantly in contracture, my gait with CP causes my left foot to drag behind me and occasionally catch on the ground.

I don’t usually realize that I caught my foot until I’m about to hit the concrete. Knowing you’re about to go down is one of the worst feelings. It’s the “pit in your stomach, heart skips a beat, everything around me is in slow motion” feeling. After two broken wrists as a kid, the last-ditch effort I can make is to be sure not to fall with my hands forward. If the impact is too much on my palms, bones have a tendency to snap.

After you hit the ground, it’s a whirlwind. Whatever I was carrying is now scattered in front of me. New wounds start burning. And after I pick myself up, all these questions start running through my mind.

Did I stretch today? 

What shoes do I have on?

Are there large cracks in this sidewalk?

Did I rip my jeans again?

How badly am I bleeding?

Do I have Band-Aids with me?

Can I wiggle my wrists back and forth? Yes? Good. Nothing’s broken!

My brain is going a million miles an hour. I’m shaky. I have to remind myself to re-focus. With my cerebral palsy being as mild as it is, I don’t usually have to worry about how it impacts my daily life as a college student. And living a positive life with the condition is very important to me. But when I fall… boom. I’ll keep it real: These are the days when my CP begins to consume my thoughts.

Why am I so tight? 

Why aren’t my muscle injections working perfectly? They’re supposed to be helping!

Now I have to go clean myself up before doing anything else!

I don’t have time for this!

And then, I have to remind myself to B-R-E-A-T-H-E.

It’s OK. 

It’s just another scrape.

Let others help you.

Falling has given me the grace to see a great amount of kindness in people. When I fall away from home, I have to rely on friends to help me clean up my bloody knees and elbows. At my lowest, letting others take care of me is hard, but it has allowed me to really see the best in people, and given me a lot of gratitude. Even strangers have been so genuine, asking if I’m OK at that moment I hit the ground. It reminds me there are still good people out in this world.

In the past few months, I’ve had more falls than usual. Yes, the scars that result are a part of my story. But I can’t say I was thrilled when I looked in he mirror last week and saw a couple of scaly reddish purple ones on my knees. I hated that these marks were messing with the look of a sparkly Christmas Eve ensemble. At the end of the day, though, I have to remind myself that my life doesn’t have to revolve around how many times I scrape my knees.

I can’t do much about falling. But getting back up stronger?

That’s all I know how to do.

We want to hear your story. Become a Mighty contributor here.

Image via Thinkstock.

Amelia riding her bike.

If I Could Talk to My Younger Self Growing Up With Cerebral Palsy


Sometimes I imagine what it would be like if I had the opportunity to speak with a younger version of myself. I wonder what I would say. I wonder what advice I would give to my 7-year-old self growing up with cerebral palsy, the little girl with the nervous smile who has yet to go through three intense surgeries and many, many years of physical therapy. I wonder how it would feel to talk with someone who I knew so well, but yet couldn’t completely relate to since she hadn’t yet gone through all the pain she would experience in her future. I wonder…

I’m sitting on a bench in a small park I don’t recognize. There is a playground with swings and a play set, which are all just a few feet from where I’m sitting. Kids are playing in every available space in the park, but I feel like I’m a thousand miles away from their voices. It’s not until I hear her bubbly laugh that I know where I am. As I look over at the play set, she climbs out of the tube slide, practically
falling right out into the sand because she’s laughing so hard. A moment later, her eyes lock with mine, and I know. The girl with the nervous smile, bubbly laugh and bright blue eyes is the younger me. However, it’s not until I look down a second later to see the braces on her feet that I’m certain my
assumption is correct. Even though my stomach feels like it’s flipped inside out, I get up from where I’m sitting and walk towards the younger me.

“Hi, can I play with you?” I ask.

She looks up at me with the hugest grin on her face. “Yes, but only if we sit right here in the sand. I don’t really want to get up.”

“That’s perfectly fine, Amelia,” I say, as I sit down in the sand beside her.

She is focused on putting her arms as far down into the sand as she can, so it takes her a moment to realize what I said. “Wait, how did you know my name?”

“Because I’m you. I’m you at 24 years old. We are the same person.”

Young Amelia looks at me quizzically for a second, and then asks, “Does this mean we can be
friends?”

I can’t help but laugh as I remember what I was like when I was younger. Even at the age of 7, I wanted acceptance. More than anything, I wanted friends. Though those two things are something I still find myself longing for, it was intensified when I was younger. It was often the only thing I could think about since, it held such a strong connection to being just like the other kids, the “normal” kids.

I find myself staring with amazement at my younger self, wondering where to even begin.

“You have a wonderful best friend waiting in your future. In fact, there are many, many friends who will be in your life. However, the one I’m referring to, she’s everything you’ve ever hoped for in a best friend.”

“Why can’t she be here now?” Young Amelia asks.

“She hasn’t met you yet. She won’t come into your life until you’re 16, but I promise you, she’s the kind of best friend you have always wanted.”

Instead of concentrating on playing in the sand, I now have the attention of my younger self. She looks up at my face with curiosity, so I continue.

“You’ve got a long road ahead of you, and it’s not something anyone is going to able to prepare you for. It’s going to be incredibly hard. However, trust me when I say that you can get through it. It’s going to feel close to impossible some days, especially when the pain gets really bad, but I promise you’ll get through it.”

Young Amelia looks down at the braces on her feet and touches the plastic ever so lightly with her
fingertips. “I’m scared,” she whispers softly.

“I know,” I say. “It’s OK to be scared.”

“You’ll get stronger,” I tell her. “It may seem overwhelming now, but eventually it becomes like second nature. You’ll fall, time and time again. But you know what’s amazing about you?”

Young Amelia looks at me expectantly, but I know her nervousness lies just below the surface.

“You get back up…every time,” I say.

“Why? Why do I have to keep trying?” she asks.

“Because it’s the only way you can move forward. It’s the only way you can be independent.”

Even though I see Young Amelia roll her eyes at me, I know my words are having an impact on her because she takes my hand and squeezes it. As her fingers link with mine, I am overcome with love
for the little girl who has yet to know the intense pain she will face. I have to look away from her before she realizes I’m crying. As I wipe away my tears, I look off into the distance to see the sun setting behind the trees.

“I have to go soon,” Young Amelia says.

I nod, unable to say anything. I don’t know if I’ll be able to walk away. However, I say the one thing I’ve wanted to tell her all along.

“I love you. So so much,” I say, letting the tears fall and knowing that Younger Amelia doesn’t grasp the magnitude of this moment. I would save her from all this pain if I were able to. However, deep down, I know I can’t do that. She has to go through it. She has to go through it if she wants to become me.

She hugs my legs tightly, and the warmth of her small body against my own makes me smile.

“I’m so happy that I get to be you when I get older,” she says.

She turns to go, and as I watch her walk away from me, her last words weigh heavily on my mind. Though she may want desperately to be me, I know I need to remember to be her as well. I know
that little girl is still within me, and she is showing me just as much love as I wanted to be sure to show her.

We want to hear your story. Become a Mighty contributor here.

 

Things People With Cerebral Palsy Want Their Friends to Know


Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.