Why My Anxiety is Like the Cycle of The Ocean Tide

 

I worry.

I worry and I worry and I worry. Actually, I have anxiety. It’s not just worry and it’s not just stress. 

People have told me, “Yeah well, we all worry.”

It’s not the same thing. Anxiety (also referred to as generalized anxiety disorder) tricks your brain into worrying about something you probably don’t need to worry about—over and over again.

I know that worrying about certain things is illogical, but anxiety makes my brain go around and around in circles. Anxiety is persistent, and no, it’s not just stress or being nervous. 

My anxiety has been referred to as “silly worries” and I have been called “a ball of anxiety”.  I think sometimes having anxiety means that your brain is discontented not worrying about anything. As a result, my brain tries to find something to worry about. The way I see it, if I don’t worry, then I’m not preparing myself for possible danger. 

As you can probably imagine, trying to go to sleep is difficult sometimes. My brain just won’t shut off. Something I’ve found that helps is a CD of the ocean waves crashing against the sand. The sound is so soothing to me. The ocean waves just splash and then draw back because it is what’s supposed to happen. Though the ocean waves are loud at the beach, in the comfort of my own bed, I can practically feel the cool, ocean-washed sand squishing beneath my toes. 

One  night while I was trying—and failing—to drift off into sleep, a metaphor that perfectly describes my anxiety came to me.

My anxiety is like the ocean waves crashing against the shore.

As confusing as that most likely seems, let me explain.

Typically one thinks of the beach as relaxing. I do as well. The breeze and the wind ruffles my hair; the ocean is cold, refreshing, and so beautifully blue; and the sand is soft and fluffy. 

The ocean is what intrigues me. It is mysterious and powerful—and it has a function.

As much as I dislike my anxiety, it has a function, too. To some extent, it keeps me safe.

I love to watch the ocean. Whenever I go to the beach, I like to collect seashells and what they represent. Seashells are the abandoned homes of sea creatures. Home is just a place for them. Sea creatures don’t worry about leaving their home behind. They just do it.

On that same note, the ocean has a function to perform, and it does so effortlessly. The ocean (obviously) doesn’t have a brain. There is no anxiety involved. Nothing but the sound of the waves. Everything happens the way it is supposed to. There is no overthinking that complicates the ocean’s purpose. 

Thus, my metaphor.

If you watch the ocean long enough, you’ll see the waves draw back. When the ocean waves temporarily recede, shells are left behind on the beach. In my opinion, seashells are really pretty. Because there is a mindless, continuous cycle—in this case, the waves receding and then coming toward the shore—there is a beautiful result (seashells). 

The same is true for the cycle of anxiety. For a while, I am anxious and tense. My brain whirls at 100 miles an hour while I pick my fingers and tighten up involuntarily. But when my brain takes a break from being anxious, I am able to relax.

When my anxious cycle stops, I am able to enjoy the moment. The “seashells”—or the beautiful thing at the end of the cycle—is the relaxation. The realization that I am okay. The reminder to myself that I can just breathe and pause for a second.

When I stop worrying, beautiful things can happen. I can do things I never thought possible because my anxiety is no longer holding me back. The times when my anxiety takes a break, I can do things like going to overnight camp. When my head stops pulsing with thoughts that warn me, You’re about to mess up or have a stuttering episode, I can order confidently at a restaurant. When my brain stops chanting, You’re going to get lost, I can maneuver through a crowd. When I stop telling myself, You’re awful at conversation and no one really likes you, I can go to a small party and talk with my friends.

The ocean waves crashing against the beach will never stop. That is the function of the ocean, the way that gravity works. It is a never ceasing process. But when seashells appear on the shore, it is the satisfying, beautiful result of such a process.

My anxiety is a cycle, too. But the times when I can interrupt the cycle—those are the worthwhile moments that give me clarity. Those are the moments that remind me that my brain is not the enemy. 

Those moments of peace, of separation from my anxiety—those moments are my seashells in the sand.

When A Boy Mocked Me for My Sensory Processing Disorder

 My sensory processing disorder is different than some others. It mostly manifests in eating, sound, and touch. I cannot handle anyone touching me around my shoulders or hips; it hurts too badly. Sounds are difficult to tolerate. My least favorite sounds are screaming, cursing, the fire alarm, thunder, fireworks, and balloons (to name a few). I am a picky eater, but shrimp, eggs, and marshmallows are foods I cannot stand the texture of, and most meats except for chicken and turkey.

The problem with sensory processing disorder is that it can make it hard to tolerate the world. Our world today revolves around sound. Thunder, talking, car engines, etc. are all part of our world today. Food is an important part of both family life and the world, too. My parents are endlessly patient, but because the textures of some foods are hard for me, it is hard for them to parent a picky eater (and understandably so).

In my experience, a lot of people think that sensory processing disorder is made up, but it is so very, very real. They say, “Oh, you’re being too sensitive” or “it’s just anxiety.” I am diagnosed with anxiety and am an HSP (highly sensitive person), but my struggles with sound, touch, and texture are because of SPD. Because touch bothers me so much, I got misdiagnosed with fibromyalgia when I was 9 years old. A lot of people aren’t aware of sensory processing disorder.

This problem presents itself at school, too. Never mind the fact that at theatre rehearsal, when the intercom came on over my head, I clutched my ears and rocked back and forth until the announcement stopped. Never mind that I can’t focus during a fire drill because I have to hold my ears closed.

It all came to a head one day in choir. (I love music when it isn’t too loud—so, no rock music for me.) But I am the dorky musical theatre kid. I was unlucky enough to be seated by an extremely hyper and inconsiderate kid who was screaming across the classroom to his friends. I don’t think he has ADHD; he’s the kind of kid who talks just to hear his own voice — the problem is that he does it loudly.

After cradling my ear into my shoulder for a few minutes, I really couldn’t take it anymore. I had tried to be patient, but I just couldn’t do it.

”Um…” I said hesitantly, “can you please stop screaming? It hurts my ears.”

The boy looked at me incredulously. “I’m hurting your ears,” he repeated in that way that tells you when someone a) either doesn’t believe you or b) doesn’t care. He started talking loudly again just to spite me, screaming over to the girls in the corner, and I held my ears closed.

“Please,” I said again. “I’m sorry to have to ask this, but can you please be quiet? I have sensory processing disorder.”

The boy wrinkled his nose at me, looking like he’d just smelled something bad. “Sensory what?” he said.

“Sensory issues,” I said finally, knowing he wouldn’t understand the term sensory processing disorder. A lot of people don’t. “It means that loud noises hurt my ears.”

The boy looked interested now. “So that means it hurts when I do this?” he asked, leaning over. He came really close to me and screamed directly in my ear. I jerked away, holding my ear, a lump in my throat. I had been through bullying and teasing before due to my cerebral palsy, but this was plain mean-spirited about my sensory processing disorder.

The boy started pointing and laughing at me while I blinked back tears, trying to recover from the assault on my ears.

My goal here is that we need people to understand what sensory processing disorder is. It is real, it is important, and it is not the fault of the people who have it.

We need to raise awareness. Are you ready? I am.

Facing My Feelings Toward The Store Employee Judging Me When I Went Through Serial Casting

 

To the store employee who chose to judge a book by its cover:

I was walking with my family in Home Depot to get some supplies. I had just finished another round of Botox injections and my physical therapist decided I needed to be casted. (One of the worst experiences.) The casts were supposed to “support” the Botox injections by ensuring that my legs would continue to be loose. I was re-casted every week for about two months.

The sandals I had to wear to school, the stares and the casting process itself were pretty uncomfortable, though I was no stranger to most of those things. AFOs, which I wore until last year, need to have a mold. I get stared at a decent amount, both with AFOs and without, and I’ve pretty much given up on stylish footwear, but the sandals let in dewy grass when we went outside for recess.

Some kids at school thought I had broken my legs, though obviously, I was walking without crutches with the casts on. But no one really said anything about it. I got tons of questions, but it wasn’t really a big thing whether my legs were “broken” or not.

In the store, I was holding my dad’s hand. I tend to hold hands with someone in public places because I feel overwhelmed if I don’t, and I’m also more of a fall risk if I don’t hold on to someone or something.

As we passed by an aisle, a female employee was arranging a display. As we passed by, she said rather loudly, “Gee, you broke both of them? Good gracious, be more careful.”

I was so embarrassed. I was mortified. The casts were out of my control completely. The casts and Botox were not what I wanted. It’s not my fault that I was born with cerebral palsy, and a mild version at that. I was and am not an attention-seeking child, so to be called out like that was pretty much my nightmare. The way she phrased it made it seem like I was ungrateful, in a way, and didn’t care what happened to my body, which couldn’t be further from the truth.

Also, she couldn’t be more wrong about how careful I was. I am as careful as possible (unless my pride kicks in), and there was no way I’d do something dangerous enough to break my legs. Besides, athletic activities are not really my fortè.

All I wanted was to fit in. And a few other customers looked my way, which caused me to hang my head. I felt embarrassed for something I couldn’t help.

What the lady didn’t understand, and what I have a better grasp on how to explain now, is that cerebral palsy (CP) falls on a spectrum. Not everyone with CP uses a wheelchair, and not everyone with CP is ambulatory. A large chunk of society has an image of what a disability looks like, and that’s not true in all cases. My cerebral palsy is mostly invisible.

Plus, not many people walk around in casts unless they have broken a limb, although casting is more popular now as a treatment after Botox for cerebral palsy. She’d probably never seen a kid like me, although it was really none of her business what happened.

My dad acted as my advocate and told the lady that “not everything is as it seems.”

I wish I hadn’t been embarrassed that day in Home Depot. I wish I had kept my head up, because having CP is nothing to be ashamed of. I was pretty shy back then, and it hurt to be judged for something I really couldn’t help.

I’ll be honest — I used to resent the employee for what she said. The embarrassment was hard to shake. I don’t feel angry at her anymore. In the end, I’m glad she made me aware of the perceptions that society can sometimes have.

People need to know that cerebral palsy has a spectrum, invisible disabilities are real, and “not everything is as it seems.”

The Language Sometimes Associated with Having a Disability

    I am all too aware of the power that words can hold. I began writing about my experiences living with cerebral palsy (and eventually, anxiety and sensory processing disorder) when I was seven years old. I have been teased and bullied, belittled and mocked—and on the absolute opposite side of things—praised and comforted, and been given kind feedback and validation. Yes, words are powerful, for better or for worse.

    This year, my eyes have opened more and more to this fact. After being referred to by a not-so-nice word describing my disability during an interaction with my teacher and having joined The Mighty—through which I’ve read countless articles furthering the debate between identity-first (i.e., disabled person) or people-first (person who has a disability; person with a disability) language—I have discovered what exactly is my “pet peeve” surrounding language that describes disabilities (and mine, specifically).

 

So I compiled a list of words that people often use to describe cerebral palsy—and disability in general—that I don’t care for. And no, I don’t believe that I am being too personal. It is okay that I don’t like how people sometimes talk about my challenges. Also, this list may not offend everyone with CP. 

1. Handicapped 

Definition: unable to use part of your body or your mind in the way that most people do because it has been damaged; to place at a disadvantage 

I have always had an issue with the word “handicapped”. I don’t know why exactly; only that the word rubs me the wrong way. From what I’ve seen, I’m generally alone in my dislike of this word, but it irritates me to no end. I feel that the word “handicapped” implies that my disability—cerebral palsy—holds me back, when that is anything but the truth. My having cerebral palsy has allowed me to meet some of the most amazing people on the planet. I have been able to write articles about my experiences for The Mighty, the Cerebral Palsy Foundation, MSN, and have been able to start my own blog. I have discovered truths about myself that may not have been possible had I not had CP. I could go on, but I digress. The point is, most of the time I am proud to have cerebral palsy. It definitely isn’t easy, and it causes me to struggle physically, but I am not held back because I have cerebral palsy.

Another reason why I have a problem with “handicapped” is because there is such a negative connotation to it. You always hear stories of people complaining because so-and-so parked in the “handicapped” parking spot—even if they have a placard—or because they don’t “look ‘handicapped’”. I know I have been told this. The reality is that invisible disabilities are more common than people think. And yes, it definitely irritates me when people who don’t have the placard park in a reserved space—but that’s not me judging their disability, it’s me being disappointed that they choose to park in a space that they don’t have the tag for.

2. Retarded

Definition: less advanced in mental or physical capacity; foolish or stupid

I might be wrong in saying that everyone in the disability community hates this word, but I certainly do. It is highly offensive to someone who has an intellectual disability, and frankly, I don’t like being called this word either.

My cerebral palsy does not affect me cognitively. The only areas that my CP affects are my legs and the dexterity in my hands. It might contribute to my sensory difficulties at times as well, but I don’t know that. 

Nonetheless, some of my classmates seem to think that the word “retarded” describes absolutely anyone who has a disability, regardless of the type or how offensive that the word is now regarded to be. 

I was called “retarded” after not understanding a suggestive reference. (To be honest, I’m pretty sheltered from a lot of the things that other teenagers tend to talk about, so there are plenty of times where I’m in the dark.) 

I’m sad to say that the words “ __tard”, “retard”, and “retarded” are pretty quick to come from the mouths of most teenagers as an insult when others do something wrong. Most of my classmates are aware that I need extra help physically, but that doesn’t prevent some of them from using this word anyway. 

The word “retarded” is outdated and extremely hurtful. Please be mindful of that, and the fact that some challenges are invisible. Err on the side of caution.

3. “sped”

Definition: an insult when someone does something deemed ‘idiotic’

Ughhh, this word. Students devised this word from the self-contained “special-education” classes. However, younger people now refer to others as “special-ed”, meaning that they should be in those classes because of their inability to do something. Of what that something is that’s required, I have no idea. The ability to fit in? I don’t know, and I don’t care.

No one should use “special-ed” or “sped” as an insult. It’s not insulting to be in those classes. There are people who need special education classes, and that’s not a bad thing. 

I have been called “sped” because of the way I walk, because I tend to lose my balance, and because I don’t understand so many of the jokes that many others my age use. 

Most kids think that “sped” is just another insult that is commonly used in my school, but it’s not. It is an offensive term that subtly puts down people who do have intellectual challenges. One boy literally jumped out of his chair to yell “Sped!” out at me when I asked a question. It makes me grit my teeth in annoyance every time I hear it. I am the first to call my classmates out when they use this type of language, and my teachers have started to do so as well. 

4. “Spaz”

Definition: one who is inept; to lose physical or emotional control

“Spaz” is an abbreviated word that means “spastic”. Because “spaz” is not a medical term like “spastic”, many people think it is just a word used to describe someone who is clumsy. Oftentimes, that is what “spaz” is used for, but it’s offensive.

“Spastic” is a medical word that is used to note how tight something is. For example, my hamstrings and most of my leg muscles have a lot of spasticity. The type of CP I have is spastic diplegia cerebral palsy. In fact, on average, 77% of people diagnosed with cerebral palsy have spastic CP. 

With that in mind, using “spastic” or “spaz” with a negative connotation offends quite a large number of people. 

The only experience I have hearing the word “spaz” comes from my seventh grade year. A boy repeatedly dropped his pencil. When he picked it up for the third time, he said the words in a tone full of scorn that I will never forget:

“I’m such a spaz; I have cerebral palsy.” He laughed so hard while I froze, my anger growing rapidly.

Because that boy didn’t have cerebral palsy. He didn’t have an IEP. He didn’t have a physical therapist pull him out of class. He didn’t fall down twice a week. 

And he thought that cerebral palsy was just dropping a pencil and picking it back up.

Anyway….

“Spaz” should not be a word used to pull someone down. It’s not bad to have spasticity like I do, like approximately 13,475,000 people have globally. 

The people who use the words “spaz” or “spastic” to insult each other have no idea what having spasticity really means. I’d like to change that.

5. “Crippled” or “crip”

Definition: severely damaged or malfunctioning; out of working order; to make useless or powerless

I could go on and on with this word. I absolutely hate it. My teacher referred to me as “crippled” to make another girl, who had a broken leg at the time, and no physical disability, feel welcome. I am not malfunctioning. Some people could argue that my body does not work the way that a human body is supposed to, but I don’t care. God designed me—and every other person with CP—this way, so it is the way I’m meant to be. I am not out of working order. No one who has challenges is out of working order. I can still do plenty of things, regardless of whether I am slightly more limited in the physical aspects. Lastly, no one is useless. I was put on this Earth for a reason, and my belief is that reason is to help others and speak for people with disabilities who cannot speak on their own. The only thing I am “crippled” by is the people who tell me my worth. A lot of people think that worth is determined by what you can do physically, but nothing is further from the truth. No one’s worth is just one thing. I am not my legs, and no one else is, either.

6. “Freakazoid”

Definition: a person who is physically deformed; a freakish creature; to behave in a wild or irrational way

I was told that I was a freakazoid by a kid when I overreacted to a touch. I have sensory processing disorder, so touch feels different to me than it does to most people. My cerebral palsy also causes me to have hypersensitivity, which is why it hurts sometimes when I am touched. 

You never know what differences someone may have, and how those differences may cause someone to act. Just because someone acts differently does not mean that they are freakish or behaving irrationally. 

7. “Wrong” (as in, “What’s wrong with you?”)

Definition: Unwanted; not in conformity

I cannot count how many times I have been asked, “What’s wrong with you?” From what I’ve read and heard, that is (unfortunately) a common question in the disability community, and it shouldn’t be. 

My CP is not an unwanted quality—at least not for me. While I am frustrated with the lack of control I have over my legs, that doesn’t mean I would want to change the fact that I have cerebral palsy. I wouldn’t. 

While people who do not have a disability (sometimes referred to as the able-bodied community; more on that later) might view physical disabilities as undesirable or “wrong”, I certainly don’t. 

And yes, having a disability might not be considered in conformity, but it’s not that far off, either. Given the fact that 26% of Americans have a disability, it’s not like it’s rare to have a physical or mental difference that goes against the norm (whatever that is). 

No matter what anyone might tell me, having CP is not wrong. If you’re curious about a disability or difference, find a different word to use than “wrong”. 

8. “Able-bodied” vs. “Disabled”

Most people who have a disability are divided about the language they use to express their disability. Basically, language differs from person to person. For example, some people might not find the word “crippled” offensive. And as surprising as that is to me, those same people might not understand why I do find “crippled” offensive. 

The same is true for the way having a disability is expressed as a part of identity. Most people who know me can tell that I prefer what is called “person-first” language. This means that I prefer someone to say, “Caroline is a person who has a disability” rather than, “Caroline is a disabled person.”

While cerebral palsy is undoubtedly a part of my identity, it’s not the only part. And I don’t really consider myself disabled. Yes, I struggle—but my physical ability (or lack thereof) is not my only ability. So I’m not entirely disabled, in my opinion. No one is.

That being said, I respect everyone’s choices, and just because I may see a situation differently than someone else, when in their company, I will abide by their choice. 

Additionally, I have trouble calling the people who don’t have a disability “able-bodied”. Because my body is still able to do things. While I understand this is not always the case for everyone, I am able to breathe and to blink and to speak and to walk, etc. The way I see it, the job of the human body is to house a soul. 

Being disabled—if that is the way one chooses to see him- or herself—is not a bad thing. But having a disability instead of being disabled is the way I would rather see myself.

And I probably won’t like calling other people “able-bodied”. It makes me uncomfortable.

I am proud of who I am, and I like myself enough to use the language that I’m comfortable with. To my fellow people who have a disability, I would encourage you to use the language you are comfortable with, too. 

To those who sometimes struggle finding the words to describe a disability, I would advise you to talk to someone who does have that challenge. I know that I personally find the above words offensive, but that might not apply to everyone. 

Above all, just be kind—because there are disabilities that are invisible. 

The Public Speech I’d Never Prepared For (and Wasn’t Ready to Give)

I am like no other student. My mild cerebral palsy and the types of classes I’m enrolled in aren’t commonly seen together. My teachers, of course, are aware that I have cerebral palsy, but most of the students are not. I don’t make an effort to hide my CP—I walk the way I walk, naturally, and that’s that—but I don’t appear the way that society views a person who has a disability. Now that I’m much older and more mature, my friends know that I have CP and that I may need help sometimes—like a hand going down the stairs or stepping off of a curb, for instance—but it’s not a big deal to them, and I appreciate that. Yes, cerebral palsy is undeniably a part of me, but it is far from what defines me.

    That being said, when I was in elementary school, I wanted to distance myself from having CP as much as possible. I wouldn’t say I was ashamed of it—people watching me closely would notice how often I fell down or needed help anyway—but I knew that my having a disability would not help me make friends. Kids can be extremely cruel, and they don’t want the “burden” or “extra task” of giving help to someone who needs it pretty often. (Most of them, anyway.) I have been so, so lucky in being blessed with amazing, kind, compassionate friends who never seem to mind that I’m slower than average. 

    Whether I admitted it to myself or not, I tried to hide my cerebral palsy. The road to self-acceptance has always been rocky for me, and quite frankly, I still struggle with the way my legs work sometimes. I don’t always understand it, but—as I try to tell myself—I am the way I am for a reason. Back in elementary school, I also tried to hide my AFOs. I wore them on both legs, and, because I am a person who loves color, the designs were always bright, colorful, and—the way I saw them—pretty. The appearance of my AFOs did nothing to distract other kids from noticing them; in fact, it probably had the opposite effect. 

    One of my biggest fears was and is words. Words are so powerful. I have always loved using words to convey my experiences, but I am all too aware that they have a negative side, too. I would get bullied whether I “hid” my AFOs or not, whether I told people I had cerebral palsy or not.

    Regardless, I never really told anyone unless absolutely necessary. That freedom was taken one fateful day in fifth grade. 

    We were doing grammar worksheets. English has always been my strongest subject, and I adore reading and writing. I think the end of that class was the only time I’ve ever hated English.

I completed the first half of the worksheet pretty easily and moved on to the bottom half. My eyes immediately locked on two of the words that were repeated in the various sentences: “cerebral palsy”.

The first sentence said something like, “Madeline has cerebral palsy and uses a wheelchair, but she still has friends and goes to school.” 

I felt my body go hot. For some reason, seeing my diagnosis in print always shocks me, and I’m not sure why. I guess it’s because I have never met another person who has CP, and as crazy as it sounds, sometimes I think that I’m the only one.

I circled the subject and verb, as it said in the directions, and moved on to the next sentence. The pencil was shaking in my hand at this point. 

The second sentence said something like: “Jack is friends with Madeline despite her disability, but he wanted to know more about cerebral palsy.”

I started to get angry. I am very sensitive to words, and at that time in my life, I was still not okay with the word “disability”. I am now, unless the word is used in a negative way, but I wasn’t then. 

Secondly, I don’t want someone to be friends with me despite my disability. I want someone to be friends with me who accepts my disability as a part of me. 

I put the pencil down, my heart pounding. I had a bad feeling about this. I thought, somehow, that this worksheet full of sentences about a girl with cerebral palsy was going to get connected to me.

And I was right.

My teacher put the worksheet on the screen. She went over the first half of the worksheet, and I tuned her out. I was waiting for something. Then she read the first sentence on the bottom half of the page. Then the teacher looked up and winked at me. I guess she noticed I was looking at her, or maybe she thought I demanded that everything that even mentioned cerebral palsy was related in some way to me. I don’t know. I gave her a tiny smile back, feeling my face get even hotter. But, foolishly, I relaxed a little. If the worst that was going to happen was my teacher giving me a wink because, yes, I had CP and the girl on the worksheet did too, then fine. Except no. She asked a boy near me to share his answers, and he did. I made sure I had the correct answer on my paper and looked up again.

A boy in the next row raised his hand, and the bad feeling in my stomach intensified. The teacher called on him, and he said:

“But what is cerebral palsy?”

I tried as hard as I could to look uninvolved, like nothing in this conversation was relevant, like I wasn’t even there. But I knew it wasn’t going to play out like I had an escape. 

I also knew that if my teacher explained CP, and if she explained it wrong, I would be irritated. 

My teacher gave me a full-on smile and then turned to face the boy. “Well, we actually have someone who has cerebral palsy in this classroom,” she announced. (She pronounced “cerebral palsy” the wrong way, I noticed.)

I fought the urge to bang my head on my desk. Of course. Of course CP couldn’t just be my private thing. No, it had to be—I had to be—a learning opportunity because of a grammar worksheet.

To be clear, I think disability representation is amazing. In hindsight, it was great that there was a girl who had CP on a fifth-grade worksheet. But it shouldn’t have meant that I had to be the impromptu guest speaker and disclose what I didn’t want to in my own classroom, where some of my classmates had teased me and some of whom I’d never spoken to and didn’t like. Why did they have the right to hear what I hadn’t even had the courage to tell some of my own friends yet?

“We do?” the boy asked, like it was unbelievable, when in reality cerebral palsy is the most common mobile disability in childhood. (But of course, he didn’t know that.)

The teacher nodded, and I braced myself.

“Who?” kids were asking as they looked around, like whoever it was was an alien or a student they’d never seen before.

With a big grin, the teacher asked (more like commanded), “Caroline, would you like to tell us what it’s like to have cerebral palsy?” 

Well, the so-called “secret” was out. So much for the confidentiality notice the school always put on my IEPs. I’m sure I probably looked like a deer in headlights. Because, to be honest, no, I did not want to tell these indifferent and some, cruel, fifth-graders what cerebral palsy was actually like—something that they’d never have the capacity nor perseverance to understand.

But I was at the age where I thought I had to do whatever an adult said.

“Um, okay,” I said reluctantly, grabbing on to my desk to support me. The teacher motioned for me to come to the front and face my classmates. The kids were all watching me now, scrutinizing me, for signs of a disability they didn’t even understand.

Not exactly the time I wanted to need my desk for support, but oh well. 

I began a hurried (not to mention, awful) explanation of what cerebral palsy was—but in my defense, I’d hardly prepared to tell a room full of twenty-five judgemental people about something I’d only known I had for two years. (My parents told me that I had CP when I was eight years old and in third grade.) “Well, um…cerebral palsy is, uh, also called C-CP,” I stammered. “I, uh, well, I got it because my um-umbilical cord s-s-snapped and…and I lost oxygen.” I paused for a breath, noticing to my annoyance that my knees had started to shake. When I’m nervous or fatigued, my knees shake involuntarily. It is called clonus, and—for me, at least—it’s a symptom of my cerebral palsy. Pretending not to care—given the circumstances—I continued, “-but it-it’s not the same for everybody, and—people with CP aren’t so—so—so”—I tried to take a breath—“d-different.” (I have a bad stutter when I’m nervous. My stuttering is noticeable when I’m anxious, but other than that I keep it in control.) 

“Thank you, Caroline,” my teacher said, clearly trying to save the situation.

My classmates watched me with the same amount of horror as if I’d just thrown up. True, I had just word-vomited. I was not ready to explain cerebral palsy. I had known that, too—but I let my fear of disappointing an adult force me into a situation I hadn’t wanted to be in in the first place. 

Now, I think—and hope—that I’m better at advocating for myself. I aspire to advocate for others with cerebral palsy, but if I’m honest with myself, I’m not ready yet. And that’s okay.

I came to realize that my CP is mine for a reason. It should be private, or at least, able to be shared when I’m ready to share it—not when someone needs a teacher. Because as much as I do want to help others, if I’m not ready to explain the way I am, then I’m not really helping anyone—just hurting myself. 

(And thankfully, my other speeches in school have gone much better. I just needed to separate myself from the equation.)