Wednesday, April 20, 2022

The Power of Words

 God has bestowed CP upon me, which I used to consider merely a curse. However, as I’ve gotten older, I’ve realized that cerebral palsy truly is a blessing in disguise—and sometimes, not in disguise. 

God has blessed me with the gift of speech and writing. I feel like He did that for a reason. I feel it. I feel that I am supposed to be an advocate for others with CP, since many people with cerebral palsy are nonverbal and that doesn’t happen to be the case for me.

I am able to type and to speak, and I plan to use those gifts. At times, I feel guilty for the mildness of CP that I have, but then I remind myself it’s not my fault how I was born. It’s no one’s fault. It was God’s plan for me. When I do feel guilty, I comfort myself by reasoning that I was meant to be an advocate for others.

But being an advocate for others means that first, I have to be an advocate for myself.

Until recently, when kids said something offensive or repeatedly bullied me, I would either a) brush it off or b) tell my parents. My mom and dad are amazing advocates, and they always have been. They handle situations with grace and make sure to ask me how I would like the situation to be handled.

A few times, I have informed my peers how they’ve made me feel. A few weeks ago was the first time I’ve ever spoken up for myself with an adult. Previously, my parents have been the ones to have the conversation with adults who have hurt me (when necessary, of course).

As you can imagine, confrontation with adults is much harder, and maybe that’s partly why I’ve never really done it. I’ve tried to tell myself: “No, it’s not confrontational, you’re just having an educational conversation.”

No matter how you put it—the situation ends up being confrontational. 

In this case, it was my teacher. 

I had signed up to go on my school’s Beta field trip. I guess I don’t have to justify why I wanted to go—being in the club is enough—but I digress. I had tried to be as involved as possible with the Beta club. (If you don’t know, you need a 3.6 GPA to be in Beta, at least in my school. I have a 4.3 GPA.) Anyway, I ran—and lost—twice for the position of Beta Club Secretary. No one could say I hadn’t tried to participate. 

With this field trip, I could go. I deserved to go. So I signed up. At the time, I figured there might be stairs, but shrugged it off. My teacher, whom I trusted, could help me navigate them. 

It was a Michaelangelo exhibit at the River Center, which, if you live in Louisiana, you know that the places around the River Center can have a fair amount of stairs.

My teacher explained to me that usually there are handicapped spots around the River Center, so we could probably take the elevator or something.

Right. There was no elevator.

Doesn’t matter. So, to better understand, there are words to describe CP that I don’t care for. (5 is the worst word, 1 is the best.)

1) disability 

2) abnormality 

3) handicapped

 4)deformity

5) brain-damaged/Crippled


The last two are different words, but I consider them the same level of offense. 

Maybe some people don’t understand why “crippled” is offensive. The best way to explain it is that the word “crippled” for a person with cerebral palsy (or me, at least) is the equivalent of the word “retarded” for a person with an intellectual challenge, or the word “midget” for someone who has dwarfism. And the word “crippled” may not be offensive for everyone with a physical disability, I don’t know. All I know is that the word “crippled” is offensive to me.

The reason why is because when you call a person “crippled”, while it may be true that the person has physical challenges, that is not even close to what defines them. The problem I have with the word is that it denotes a person’s worth to one thing.

And no one’s worth is just one single thing.

I am worth more than my legs. I shouldn’t even have to say that. I am not in control of the way my legs are. If you want to define me based on my personality, fine. Do that. I am in charge of my personality.

The word “crippled” means “severely damaged or malfunctioning.” I am in NO way malfunctioning. I will never overcome cerebral palsy. It is a part of me. It is not meant to be overcome. I am not damaged. God made me the way I am for a reason. To use the word crippled implies that the person cannot function. I, and anyone with a disability, can function. We are far from dead, far from beaten. I am not a mistake. People that choose to call my brain “damaged” from cerebral palsy are wrong. People can tell me that all they want; I will never ever believe it. I will never, ever believe that I am not functioning. I keep going every single day. Not only that, I thrive.

Not to mention, the word “crippled”—at least for me—sums me up with the thing I am least proud of about my body, and about myself. I am not ashamed of having cerebral palsy, nor is the message I am sending to be ashamed. But is cerebral palsy the first thing I want people to know about me, or to think of when they hear my name? Absolutely not.

Anyway, back to what happened.


On the day we were going on the field trip, all of us gathered in the choir room for the chaperones—one of which was my teacher—to take attendance. After, I met my teacher in the corner. I had asked her if I could stay with her so she could help me on the bus and things like that. A few minutes later, a girl came in on crutches. She had broken her leg the day before.

Not to minimalize the pain of having a broken leg, but having a broken leg is temporary. My condition—cerebral palsy—is not temporary. Cerebral palsy is permanent. I will deal with it my whole life. After six weeks or so, a broken leg heals, and it’s good as new. 

(I know we all have things we deal with in life, but sometimes I’m envious of having a broken leg. It heals, and then it’s just like it was. My legs will never be quite like that. (If that sounds petty, I’m sorry. I don’t mean it to be.))


My teacher, seeing the girl who was on crutches, said, “Hey, come over here. She’s crippled too.”


At first, I don’t even really know if I even registered what she said. But when I did—I got hot all over and felt like I could scream. A lot of people say I don’t really have a temper, because I hide it well and very rarely act on it. But when I get mad, I’m mad. Believe me, I try not to get angry, but to basically refer to someone as severely damaged is uncalled for.


I didn’t say anything, just looked at the floor. Looking back on it, I think my teacher meant it as a joke to put the girl at ease. But honestly, once she got the cast off, she could pretend she never broke her leg if she wanted to. Pretend she’d never been associated with the girl who needed to go slower. I can’t do that. If anything, it’s uncomfortable to be in a group apart from others, which I’d need to do for my whole life—and she wouldn’t—so I would have preferred to be comforted instead of referred to as crippled.

After that, I paired up with my friend and either she or the teacher helped me.


Maybe some of the problem is, I’m able to “mask” pretty well. At times, I feel like I’m directly in the middle of two worlds, but to be called crippled like that in front of someone else— Boom. Done. 

You’re not like me, you’re “crippled”. 

When I went home, I told my parents what had happened to make sure I wasn’t overreacting, and they were both pretty angry. They said that I had three choices—(1) I could handle it with a) an in-person, private conversation or b) an email; (2) they could handle it for me or (3) do nothing.

I didn’t want to do nothing. I did that too much, and the person never ended up knowing that they’d hurt me. At first, I wasn’t thinking of an educational opportunity, but there was that factor, too. And if the teacher ever had another student in her class with a physical challenge, she’d be more careful with the words she used.

I didn’t want to email her. She could easily read the subject line of my email and just send me an apology to passify me, without really knowing—or caring—what she did to hurt my feelings. 

So I decided to have an in-person conversation with her.

This is what I planned to say:


Hi, Mrs. [Teacher’s Name],

I really don’t want to upset you or anything, but—Last Friday, when [girl’s name] came in on her crutches, you said, “Oh, she’s crippled, too.” I just find the word crippled really offensive because it denotes my worth to just one thing, and I am more than my legs. I acknowledge that I have a physical challenge, or special needs, but that’s not all I am. You hurt my feelings when you said “crippled” and I don’t want another kid with physical challenges to be referred to as that.

I just found it really disappointing.


What ended up happening was not what I expected. Getting her to have a private conversation with me was easy enough.

At first I was fairly reluctant to do it. She was my math teacher, and I need the most help with math, although I have an A in the subject. Also, I was aware that I still had two months of eighth grade to go. I didn’t want to make my last two months of middle school awkward.

Despite my misgivings, I embraced the challenge. I want to become an advocate someday for people with disabilities. To do that, I have to learn to speak up for myself. I’ll be on my own someday, and I will need to rely on myself. Besides, I am passionate about words and the way we use them. So I agreed to have the conversation. All I had to do was try.


“Hi,” I tentatively started, my face bright red as she stared at me expectantly, “I really don’t want to upset you or anything, but—l-last Friday, when that girl came in on crutches, you said ‘Oh, she’s crippled, too.’ I just find the word ‘crippled’ really offensive—”

I do stutter at times, and I feel like maybe she would have felt like I was more legit if I’d gotten my words out. 

“Oh, I’m sorry,” she interrupted. “I’ll delete that word from my vocabulary. It’s just like the word ‘retarded’, you know? When I was in school, we never thought anything of it.”

And that was it. She turned to go back in the classroom door. I stood there and eventually followed her, my unspoken words dying on my lips. I never got to explain why I found the word offensive, and she’ll never know. She’ll just think it’s something we don’t do because we don’t do it. That’s sad to me.


More than that, as I watched her walk away, questions filled my head—and anger. She had gotten to say something hurtful to me, and didn’t have the courtesy to hear what I was going to (respectfully) say back. Would my parents be disappointed? I had done what I set out to do, but then again, I hadn’t. I hadn’t said what I wanted—what I needed—to say. 

Helplessness washed over me. Most of the time, I felt helpless about what my legs did and didn’t do. I felt helpless when people said things to me I didn’t like. And I felt helpless now, as I was cut off, the conversation I had engineered too soon drawn to a close. Furthermore, what business did I have being an advocate for others if I couldn’t even get the words out I needed to speak up for myself? I had begun to internalize—you crippled girl—and she put the word in my head. I needed to talk. But she didn’t let me. My first attempt to speak up for myself disappeared through that classroom door. 


I comforted myself—I’m only thirteen. This was my first time advocating for myself. My parents were proud of me. When I got home, they hugged me as I cried.

What struck me was that someone who could be so bold with her words wasn’t brave enough to stick around to hear the consequences. 


So yes, I may have physical challenges. But I have power in other ways. If people don’t want to listen when they make mistakes, that is their choice. But I can be content with my choice to be respectful and speak up for myself—no matter what the other person chooses to do with my words.


Monday, March 21, 2022

Sounds I’m Sensitive To as A Person with Sensory Anxiety

Sounds are life. I wish I wasn’t sensitive to so many of them, but that’s the reality. I don’t know if my hearing is better than most (probably not), or whether the sound is just turned up really loud in my head. It’s embarrassing holding my left ear closed and crouching down until the sound passes during theatre rehearsal when the intercom comes on above my head, or being delayed during a fire drill because I can’t tune the noise out enough to move. It’s embarrassing being warned by your parents when there’s about to be a loud noise, and there are things it’s hard for me to do, like go outside to see the fireworks or going to a football game. There are things I love that happen to be loud (like my dog, who’s really quiet in general, but whose barks are deafening) and celebrating the Fourth of July and New Year’s because I love my country, but find fireworks hard to tolerate. In the long run, though, what matters is being with the people I care about (and making sure I’m at least not cut off from the noises that warn me from danger). I’ve learned to deal with SPD and the challenges that come with it. I have some heightened senses, and that’s okay. I’d like to give some perspective about what it’s like to live with sensory anxiety. 

So here are my top 20 worst sounds (in order from worst—#1—to most tolerable—#20):


 1) fireworks

2) Thunder

3) The lawnmower (when I’m near it)

4) The fire alarm

5) ice makers (sometimes)

6) really loud music or TV

7) the buzzer at volleyball, basketball, or football games

8) yelling/screaming

9) dogs barking

10) balloons

11) nail gun

12) drums or tuba

13) trucks with loud engines

14) the whistle at recess 

15) the crackly Botox machine

16) microphones (sometimes)

17) cursing

18) the intercom (sometimes)

19) most ringtones turned up really loud

20) sirens

Saturday, March 19, 2022

Top 5 Quotes About Strength

1.  Strength doesn’t come from what you can do. It comes from overcoming the things you once thought you couldn’t.  —Rikki Rogers

2.  Strength is when you have so much to cry for but you choose to smile instead. —Unknown

3.  A strong person is not the one who doesn’t cry. A strong person is the one that cries and sheds tears for a moment, then gets up and fights again.—Unknown

4. Tough times never last, but tough people do. —Robert Schuller

5. Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day that says, ‘I’ll try again tomorrow’.” —Mary Anne Radmacher

Monday, March 14, 2022

Life Skills

 I will be one of the first to admit that I do not possess many life skills. But I have recently gotten better. I’m not sure exactly why it’s hard to use my hands sometimes. I guess it’s a CP thing, but I have learned to work with the way my hands are. Here is a list of  things I have learned to do in 2021-2022.

1) I I learned to carry my dog.

2) I learned to unclip my dog’s harness.

3) I learned to wash my hair by myself.

4) I (mostly) learned to tie my shoes.

5) I learned to eat properly with a fork.

Anything is possible. Ever since I was very little, I was always frustrated about the lack of things I felt I could do. When I was three or four, it was writing. I couldn’t really hold a pencil. I know that most of the tasks on my Life Skills list are simple daily routines, but to me, they are a big deal. I am grateful to my parents for pushing me and helping me to become the more independent person I want to be. I still have a lot to work on—like putting my hair in a ponytail—but I’ll do it.

I might do some things more slowly than others. I might not have found my own way to do those things yet. But that does not mean I’m giving up.

I am going to follow my dreams no matter what. That might sound cliché, but I don’t care. I will become a physical therapist. I will help people.

It will take time. It will take effort, patience, courage, preserverance. In that case, I’ve been practicing my whole life. 

As my math teacher put it once, some things might take more “elbow grease” for me than for others. That’s okay. It might mean finding another way to accomplish my dreams. That’s okay.

I will go to college. I will have a career. And I’ll do it while being myself.

These life skills are the first step—and I’m happy with that. I’ve had to take baby steps. It took me time to walk, but after that, I kept going.

This list is a baby step. That’s okay. I’ll get to the big ones when I get there.


“It does not matter how slowly you go, as long as you do not stop”. — Confucius

Tuesday, November 23, 2021

More Than Slow

 She believed she could, so she did.


To all those who called me worthless, useless, and slow:


Do you know when I started walking? I was 2 ½. Walking hurts me. My hips hurt constantly because my feet turn in. I learned to walk with AFOs (ankle foot orthotics), which are so heavy that my sister couldn’t walk in them when she tried. And that’s what I learned to walk in. I needed my AFOs until this year. I’ve been in physical therapy since I was 14 months old. I worked hard and finally got my AFOs off. It takes more effort for me to walk than most people. Yet I do it every day. It takes me more time, but ultimately I get where I need to go, if sometimes a few minutes late.


My occupational therapist (OT) used to say I ate like a caveman. Do you know when I learned to hold utensils properly? This year. I am 13. At home, I use a curved blue bowl that helps me scoop things. My parents have to cut up food into smaller bites for me to poke or scoop easier. I still struggle to scoop food into my mouth at times and sometimes resort to eating dessert with my fingers at restaurants when my parents aren’t there. But I eat, and I manage.


I started speech therapy when I was 3. It was to work on my “s” sounds. I still stutter when I’m nervous, which can make kids impatient to wait for me to get a sentence in (occasionally). But then it evolved to eating. I have sensory processing disorder, which for me means that in addition to having trouble with tolerating loud noise, certain foods are hard to swallow due to their texture. I graduated speech therapy when I was 5. It is rare for me to eat 3 meals a day. I have a small appetite and a lot of foods are hard for me to eat.


How about when I learned to write correctly with a pencil, and legibly? I wrote legibly when I was about 6. Apparently, I don’t hold a pencil “correctly”, to the point where my teacher allowed me to trace only half the page in cursive, not the whole one like everyone else.

Do you know what I did? I turned in a whole page of cursive writing like everyone else. It took me a lot longer and my writing was a lot messier, but I tried. To this day, I sign my name in cursive—except for the H; I never mastered that—and have won awards for my writing.


How about getting dressed? Is that hard? I learned to get dressed completely independently when I was about 8. I still need help with buttons and zippers, though. Most kids learned that in preschool or kindergarten. I didn’t. Maybe most kids my age don’t come to their parents for help with buttoning and zipping, but I do. My hands have come a long way, and can button bigger buttons when needed. Mostly.


I have known how to cut with scissors since kindergarten, but was unable to cut shapes until I was 7. When I’m in a time crunch, my teachers help me cut things. Cutting is one of my least favorite things to do. When I cut, it looks like a preschooler did it. But I’m proud to say that I cut and designed a poster for the library BY MYSELF recently. Sure, the challenge had to start two days late because I needed an extra night to cut things out, but even though I struggle, I manage.


I ride a bike now. I was about 9 when I really learned. My bike has three wheels and hand brakes. It may not look like the other bikes that you see on the street, but that’s ok. It works for me. Biking is one of my favorite activities and I can do it with my family. I get tired earlier than they do, and my bike works out my calves, while their bikes do not. Since my hamstrings have more spasticity, it is hard for me to ride a “regular” bike. But my three-wheeler allows me to have fun with my parents and sister.


I also attended summer camp for a week for 2 years. The camp was for kids with physical challenges. Was I completely independent? No. As usual, I needed help tying my shoes and maneuvering uneven ground. But I functioned with the help of a counselor and without my family, which was something I needed to prove to myself. 


And I learned to swim independently about 2 years ago. My parents signed me up for swimming lessons when I was maybe 4. I struggled with kicking (and still do) but back then I made it to the other side with the lifeguard’s help.

I have come a long way since then. Last summer my family got a membership to the pool. Passing a swimming test was not required, but I wanted to do it to prove that I could.

My parents were doubtful, but my dad coached me a little before the test began.

 I made it all the way across a Junior Olympic pool without stopping and without anyone’s help. My feet never touched the bottom of the pool.

(I actually did better than my sister, but we’re not bringing that up again.)


I am not “the disabled girl”.

 I am a thirteen-year-old girl. I love to read and write. I love riding horses and I adore my 11-year-old beagle Milo. I want to be a physical therapist someday to help others like myself.


Nothing is “wrong” with me.

I have had struggles since I came to this Earth 13 ½ years ago. I struggle with fine motor skills and physical activities. I am slower than most when it comes to walking or running. 

But I swear, my effort level is one of the highest you’ll ever encounter. I try so hard to be an honest and kind, determined and persevering, loving and humble human being. 

I have a hard time with balance. I have mild cerebral palsy. But CP is far from my defining characteristic.


And those of you who have called me useless over the years have no idea who you’re dealing with. I have to work hard every day of my entire life to keep going. Because I know each day will bring pain and more challenges for me.


I may do things more slowly than you do. I may require more help than you do. But I am far from worthless. I am capable. I’m me.




Monday, October 18, 2021

Yours

 Words in my head

And they won’t go

Spinning

Pounding

Stuck.


Trapped in my own brain

Your words

Invade what is mine

Steal what is not yours

To take.


Words leave your mouth

Crippled.

Wrong.

Hover in the air

Broken.

Weird.

Settle in my head

Slow

Weak

Blink back tears


Your words

Darkness

Evil

Thunder in my ears

Push me down

When I’m on the ground.


Everything in me

wants to prove you wrong

But how can I

When your words are so strong


Your words

Taking what’s mine

Do I have to be on guard

All of the time?


Destroying

what control I have

Over my mind

Your cruel

Evil

Vicious words

Stuck in my head

Over and over again


Why can’t you realize

How cruel your words are?

Can you please

Be quiet

If you have nothing good to say at all.


The pain’s still inside me

But all I want

is to let go

Let me let go

Of your words.


I want the words you gave

to go away

Hurt 

Scared

I want the confidence you stole

Tell me…

Is it gone

Forever?


Locked

Inside my head

The pain 

Your words

Grief

 Heard you were gone

Didn’t quite believe it.

Until

A hole

a gaping space

Filled with emptiness

Opened 

Inside of me.


Then I was

blind, blurry

Lost

Wet, salty tears

Clouded like the ocean…

That you’d never see again.


I miss your smile

I miss your laugh

The way you held me 

Like I was all you had.


Made me feel precious.

Like a piece of glass

Glass

shatters

Breaks into

A million pieces

Like my heart when I realized

You were gone.


My heart

You held a piece of it from the start

And now you’re gone

Gone


I remember

Holding your hand

A connection

So few understand

Your hand

Delicate

gentle

Loving 

Laughing

I didn’t want to slip out of your grasp

You slipped out of my grasp

Didn’t want to let go

Don’t want to let go

Please don’t let go…

Don’t leave me

Stay.


Don’t want to let go…

Not of your smile

Not of your laugh

Not of the memories

in the photographs

Not of your love


You filled a room

Just the bright look in your eyes

Wanted to be near you

All the time


I want to be with you

But you’re in paradise

And now you’re gone

What am I supposed to do

Now that you’re gone?


You hold my hand

Through the threshold of life

You hold 

A piece of my heart

Always


Enjoy paradise as you did life.

Always.


I’ll miss you tons

But this isn’t goodbye

‘Cause I’ll hold your hand 

Through the obstacles in life

Always.


Now is it okay

To cry?

Now those tears

Spill from my eyes

Hold them in, let them out

Pretend they are falling 

from the sky

From Heaven

Where you are

Where we’ll be

Together

One day. 

Someday.


Perseverance of love

Let me cry

I’m grieving

Though you’re in paradise

Always.

I’ll love you

Always