The Power I Never Meant To Give

 She enters (invades) my space and immediately I know that she’s there. It’s as if someone whispered a warning in my ear, but they didn’t.

My body tenses up when she walks into the room. She doesn’t know that, of course. But I know she hasn’t forgotten what she did.

Sixth grade was the first time I’d say that I ever got bullied. A boy in kindergarten was mean-spirited, but he left me alone after about two times. Plus, the kid was in kindergarten. I hate this cliché, but it’s probably true that he didn’t know any better.

By the time sixth grade comes, kids should know better than to bully others. And in the past, I’ve gotten stares and comments. I’ve heard some things that I should have never had to hear about my legs. But nothing was said or done repeatedly by the same person. 

That changed in sixth-grade PE. PE was a nightmare for me. I learned that we had to change clothes in the locker room. As a shy and modest person, that made me extremely nervous. Also, I can’t get dressed standing up because of my lack of balance. At first, it was okay because I sat on my spot on the bench to change clothes. 

Then one day, a girl put her backpack on the other side of the bench. Now, she needed more room (according to her) because her backpack took up more space. For several days, she complained that I took up too much space, so I tried to curl my legs in and cooperate. I couldn’t get dressed that way, though, so I decided to explain to her that I needed the bench for balance purposes.

I thought that would be the end of the conflict. It wasn’t. She said, “Okay, but can you take up less room?” with a mean smirk on her face. I tried; I really did. I really didn’t want to make an enemy, especially not in PE. I’m vulnerable in PE class. People see me at my weakest. 

I was trying to keep the peace while still being able to sit on the bench, but one day I felt her shove me. I tried to plant my feet firmly on the ground, but it’s really easy for people to push me. Before I knew it, I was on the dirty locker room floor.

I was upset, but I second-guessed that she really shoved me. Maybe I just fell off. Also, I didn’t have any proof.

Maybe I didn’t have any proof, but I stopped doubting myself after a few days as she continued to subtly knock me off the bench. It was taking me longer and longer to get dressed because I had to secure a position on a stupid bench that no one else even really needed. She got dressed just fine standing up.

“Please!” I said one day, embarrassingly near tears. “I need to sit here! I can’t get dressed standing up like you can, I’m sorry.”

The subtle shoving didn’t stop. People noticed I tended to end up on the floor pretty much every class period, but they attributed it to me being clumsy (which, at first, was what I thought too). 

The bullying got worse when we were put on the same volleyball team in PE class. She signaled for everyone on the team not to pass to me, and I overheard her telling another girl that I was useless at volleyball. I admit, I wasn’t and still am not good at volleyball, but the comment was hurtful. 

After a couple of days in the volleyball unit, I told my adaptive PE teacher that I was being bullied, but because he wasn’t my “official” PE teacher, there wasn’t much he could do. 

Finally, I asked my PE teacher for a different spot in the locker room. When she asked why, I told her that I was being bullied. Prior to the conversation, I had tried to establish a good student-teacher relationship with my PE teacher for several reasons: PE teachers in the past had given me an F because of what I couldn’t do and I am most vulnerable in PE. But there was a glass wall in the locker room, and my PE teacher said that she hadn’t seen anything through her glass wall. She told me that I could get dressed in her office, which I did not want to do at all. It was punishing the victim for something I had no control over. That would have embarrassed me so much. Pretty much immediately, I regretted reporting that I was bullied because I lost all credibility with my PE teacher. On the rare occasion that my adaptive PE teacher wasn’t there, I was on my own. It was quite obvious that my PE teacher strongly disliked me.

Worse, the bullying intensified. Whenever I took my shoes off to get dressed, she would step on my bare feet with her shoes on. In choir (which unfortunately we took together) she would kick the back of my chair incessantly. I asked my choir director to change seats, and luckily he was understanding. In the locker room, I told my friends what was happening and how helpless I felt, and my friend let me take her spot on the bench so I didn’t get shoved off anymore.

I tried to understand why she was bullying me. Maybe something really difficult was going on in her home life, I don’t know. And I didn’t want anything bad to happen to her at all; I just felt that I needed to understand why. Why did she shove me off when she knew I needed help? Why did she hurt me so badly? The only conclusion I came to was that she hated me because I had a disability. That thought deeply saddened me. The thought that someone could hate me because of a condition I was born with was devastating. Also, it kind of made me sad for her. There are so many awesome people with disabilities, and if your worldview is limited enough to hate all of those people…. I don’t even know what to say. 

I was so scared throughout my sixth-grade year that I was miserable. She would glare at me fiercely and I couldn’t look her in the eye. I couldn’t believe that I was so scared of a person and she reduced me to a mess. My parents say that no one can make you feel a certain way, but in my opinion she made me feel helpless. I never meant to give her so much power. I want that power back.

The summer before seventh grade, I was at a glasses store with my mom getting my glasses fixed. Then she walked in, and my hackles rose. I literally hid behind my mom and barely said a word until she left. I was scared—of a person! It was crazy. I felt so cowardly. As I peeked at her face, all those helpless, angry emotions came flooding back. She shoved me and she said awful things about me and she kicked and she stepped on my feet and I could do nothing. I was too physically helpless to do anything. 

Now it’s three years later. Unfortunately, she is in my health-science class, and we were assigned seats next to each other. Luckily, I know the subject very well (ironically, because of my health struggles), so when she was snarky with me I was confident enough in myself not to break down. I still resent having to sit next to her. It’s really hard for a past that you wish you could forget to glare you in the face every day. 

A few weeks ago, she came into the high-school theater—my safe space—and I could hardly look at her without feeling insecure. I have such amazing, accepting friends in theatre who were with me, and all it took was her presence for me to become an insecure blob of a person. 

I’d like to say I have forgiven her by now, but I don’t think that’s entirely true. Thinking of what she did is one of the only things that makes me angry. I’m not an angry person, and I wish I could hide that dark side of myself who is as angry and scared as I was in sixth grade. I don’t want to be that person. I want to forgive, and I don’t want her to hold that much power over me. I never meant to give her that much power, and I want to get it back. I will—eventually.

The Reflection In The Water

Water

No one tells it what to be, how to be

Water flows continuously, 

water keeps going, 

Content with what it is.

Made up of many molecules, all vital for the element

I, too,

Am composed of so many things

All essential to make me who I am

Though it is not always

Viewed that way.

And when the moon is risen

Darkness has fallen on the world,

there is light, reflection, in the lakes and rivers,

Reflection in ourselves.

Reflected in the water, I am

Crooked

Light refracted

Simply the girl who has the

Awkward smile,

thoughts she doesn’t

Say,

Emotions in her eyes,

and legs that are her chains—but only if

That girl allows

Her legs to define her.

I make a choice

When I look at my

Reflection

One foot on the water

The reflection ripples, is

Gone,

Unreliable.

Unreliable like my legs can be

Unreliable as my steps, legs shaky,

One foot drags behind me,

Binding me, holding me

Down

But I am not the way I walk

When I look into the water, there is so much

And so little

I can see

I can see how I hold myself

I can see my legs,

I can see all the little things

The tells—

Fingers digging into my skin;

Arms tight with anxiety;

Head tilted downward;

Eyes meeting the floor—

That make me

How I don’t want to be seen.

The way 

I don’t want others 

To view me.

When I look into my reflection,

I wonder

Is my reflection all that other people see?

There is so much more

Beneath the surface of the water

So much more

Beneath my surface

If only people are brave enough 

To dive beneath the water

God put my cerebral palsy

On my surface

God put my

Crossed eyes

Hesitant smile 

Crooked legs

on my surface

But what a blessing it is

My reflection isn’t all of me

Through my reflection

I teach others to see

Not everything is as it seems

Not everything can easily be defined

Not everything can fit into a label

I am not made up of labels.

For those that choose to see

My inside

Hopefully you see

The happiness 

in my awkward smile

The emotions 

in my crossed eyes

The effort

 in my gait

And all that my reflection can’t

Show you,

Or tell you.

My reflection can’t tell you

How grateful I am for kindness

My reflection can't tell you

My passions

My goals

All I have gone through,

All I have done.

My reflection is limited,

Is so flawed

Not just because 

my legs are flawed

But because

The reflexion shows my physical struggles

Only

My outward appearance

Only

My reflection is accurate to those who see 

With their eyes,

Not with their heart.

Water goes with the flow

Is content with the way it is

Water offers so much to the world

Is seemingly simple,

But made up of so many complex

Parts, so many

Molecules.

As I step through the water,

The next challenge

In my life,

My left knee bent toward

My right leg,

My arms tight

Against my sides,

My eyes crossed, yet seeing so much;

My left foot, turned inward though it is;

Strikes the water

Shatters my reflection

And I smile

The watery reflection never represented me,

Truly,

anyway. 

I am like water.

Content with who

I am,

Made up of

So many things,

Seemingly simple,

I can offer so much 

To the world—

If only people see

Past my reflection.

My Inner Demons Connected to My Upcoming Cerebral Palsy Surgery

 I’m having surgery this summer, and I’m scared. Actually, I’m terrified. 

I know—so many people have surgery. And I have, too. I have had about eight surgeries in total, including one when I was a day old that saved my life. 

But this surgery is different. It will be my first orthopedic-related surgery helping to treat my cerebral palsy. 

Tomorrow I have my pre-operation appointment with my orthopedist. I am very anxious and don’t really know what to expect.

About a year ago, when my physical rehabilitation doctor said that surgery might be a good option for me, I was in denial. I didn’t want surgery. To me, that meant that my legs were deeply flawed. 

Maybe they are, and maybe it’s time for me to accept it. I don’t know. What I do know is that I have had chronic pain for five, almost six years, and I am tired. Physically tired, emotionally tired. I’m tired of fighting my own body. I’m tired of always trying to find solutions to this seemingly endless pain. I’m tired of my parents stressing out because of me. Chronic pain is an exhausting cycle. 

And yes, recovery from surgery will be grueling, but my hope is that it will be worth it.

I am nervous, though. I am undergoing a procedure called a derotational femoral osteotomy. My femur will be rotated outward and my hamstrings and adductors will be lengthened. 

As children who have CP grow, our bones rotate. This can cause intraversion. In my case, because my tibia and femur are misaligned, my left foot turns in, which often causes me to trip. My derotational femoral osteotomy has two goals: to stop, or at the very least, lessen my chronic pain; and to improve my mobility, including lessening my chances of falling down.

I really hope the surgery will be successful. I have tried therapies and dry needling to stop the pain. I have tried Botox to lessen the falls. My parents have taken me to countless doctors. We have left no stone unturned—except for the biggest boulder still left in our path, so to speak. Surgery. 

To be very honest, I’m unsure because I don’t know how my relationship with my legs will change. Although there are times when I hate my legs, I truly don’t. My CP has given me a perspective on life that I am truly blessed to have, and I know that. Also, I skirt the line between appearing “normal” (as much as I despise that word) and looking like I have a disability already. My fear is that if my gait improves, I will be discriminated against because I will not look as though I have a disability. 

My surgery will take place over the summer. I will have about eight weeks to recover and undergo intensive therapy before my sophomore year. 

This surgery has arisen several complicated feelings for me. I feel flawed. I’m anxious. If the surgery is successful—which I really hope it is—I might struggle with my identity more. And after five years, I don’t really know how to live without chronic pain. 

I am looking forward to the possibility of living with less hip pain. But the freedom will be overwhelming. I won’t quite know what to do with myself. 

I will be grateful to be free of my pain, and I really hope the surgery will work. However, I am only human, and I am scared.

Whatever happens, though, my surgery will tell a story of what I’ve gone through. I’m up for the challenge. I am thankful for my blessings and with God, I am ready to see how this next chapter will unfold. 

My Enemy Is the Helplessness I Feel; Not My CP

 “One of the worst feelings is feeling helplessness. To realize that in certain situations you’re totally and completely powerless. That you gotta roll with the hard punches life will throw.” —Amitesh Kumar

Someone backs up and bumps into me in the hallway. I teeter sideways.

I’m walking in PE and I’m on my knees on the gym floor before I can even register what happened. 

I try to step off the curb but fall to my knees on the sidewalk. 

I attempt to run and play with my classmates at recess and end up on the grassy ground instead.

What do all of these have in common? I fall down, yes, and the tripping and falling is due to my cerebral palsy, yes—but more than that is the engulfing feeling of helplessness that overwhelms me in each scenario.

At some point I realized that I wasn’t “normal”—or like most other kids. There were rare occasions when a kid would bump into something and fall down, or trip over an obstacle in their way. But there weren’t many times where people tripped over what seemed like air.

I thought that as I got older, the falling would stop. My knees were pretty much always cut and scraped. When I was little, I feel like my falling didn’t matter so much because all little kids get into accidents. Also when I was little, I was shorter, so I didn’t fall from very high. 

But the falling hasn’t stopped. And falling has almost become more emotionally draining than physically draining for me. 

Most of the time, I fall frequently when my legs have the most spasticity—or basically, when my hamstrings are more tight. My muscles have more spasticity when I have a growth spurt. I can’t really predict when I’m going to fall. It takes me completely by surprise, which is why I feel so helpless when it happens.

I don’t have a lot of confidence. I tend to look down at the ground a lot. (For some reason I feel like if I make eye contact with people while passing them in a hallway, it’s like I’m challenging them.) I’ve tried to look up more lately because my posture had been causing problems with the nerves in my neck and arms. Looking up means that I don’t watch my feet, and that means I trip and fall frequently.

One of the worst falls I can remember is when I tripped going off the curb on the way to my mom’s car. I felt so helpless because the teacher on duty had to help me up and carry my bag to the car. I felt like a five-year-old who can’t carry her own stuff.

More recently, I fell during theatre rehearsal, which interrupted the scene. Interrupting the scene turned out not to be that big of a deal, but I still felt really bad about it. After a minute, I was able to stand up by myself, but I limped backstage and had to sit down.

Falls are really embarrassing. Not many fourteen-year-olds fall down frequently. At some point, I thought I would get used to the feeling, but I never have. There’s a brief moment in time when I don’t yet realize that I’m about to fall. I don’t really feel the weight of the tightness of my legs, or the drag of my feet. It is actually a freeing feeling, but in the millisecond after that, I realize that I’m going to fall down.

There is barely time for me to think before my body (usually my knees or occasionally a hip) slams into the ground. The impact usually takes my breath away. The pain is what I react to first. Unfortunately, I make a noise most of the time because it hurts so badly. When I fell during theatre rehearsal, I clutched my knee, in the middle of the stage, while trying to scoot out of the way.

Then the embarrassment hits. I usually think to myself, I hate my legs, as I force myself to my feet. I usually want to pretend that I’m someone else—someone who doesn’t fall constantly.

The pain isn’t really a big deal for me in the grand scheme of things. I am in pain every day. It’s the helplessness that sweeps me up, the self-hatred that chokes me. I’ll never get used to the impact or the feelings that come with the fall. I don’t want to be viewed as fragile—by myself or by others. I don’t have control over that, though.

All I can really do when I fall is make sure I get up and keep trying. CP might knock me down, but it won’t triumph over me for long. 

Learning To Trust Others and Act Like Myself in Theatre

 “Acting is not about being someone different. It's finding the similarity in what is apparently different, then finding yourself in there.”—Meryl Streep

Theatre has always been a somewhat complicated hobby for me. I’ve always loved it—but most of the time I let people hold me back from truly embracing myself and my role as an actress. Having cerebral palsy does make doing theatre more complicated. Generally, I am used to modifying things, making things work with my challenges, but there was and is an emotional aspect between my CP and the roles I have been given. I always want to do my best in everything, no matter what. But sometimes I feel as though I can’t give the character the full personality, the movements and gestures, that it deserves because of the lack of ability in my legs. Other times, I feel like other people’s perceptions of cerebral palsy prevent them from giving me a chance as an actress.

My first production was about pirates. I was young and maybe—probably—naïve, which isn’t always bad. The drama teacher told us that the pirate characters were going to be based on personalities. I was the youngest in the class and unbelievably excited. Even at a young age, I liked exploring characters’ personalities and what made them tick. 

That’s when another girl in the class said, “Ainsley’s character should be clumsy and off-balance ‘cause she trips and falls a lot.”

 I was dejected. I didn’t completely understand what I was feeling at the time, but I did understand that my disability, though it is a part of me, was and is not my personality. My parents expressed that to me all the time. Everyone else in the class laughed and emphatically agreed, while I stared at my shoes. 

I was trying to act and do my best and transform myself into someone else temporarily—maybe for once I didn’t have to be the girl who needed help with everything, the girl who walked funny and didn’t have any friends. I didn’t always want to be that person. 

As much as I try to embrace who I am, it’s hard dealing with the fact that I have a permanent disability that causes me emotional and physical pain. Sometimes I hate my legs. I don’t like falling down all the time. All of my classmates thought that my CP summed up all I could be—the girl who was clumsy.

I told myself that not everyone was like that. I told myself that there were people who would give me a chance to show what I could do, would give me a chance to do what all theatre lovers want to do—act.

Determined, I auditioned for my school’s Talented Theatre program. I was thrilled that I made it. Theatre class was not what I had hoped. The environment was cliquish. The other girls in the class giggled and whispered when the teacher was talking, and they never spoke to me. It was like they sensed, somehow, that I was different.

When I was in fourth grade, the Talented Theatre program decided to put on a play called Happily Ever After. I was excited because I loved fairytales. I was cast as Doc, the lovable elderly dwarf from Snow White and the Seven Dwarfs. I was happy about it at first—until a girl in my class said, “Ainsley’s perfect for the role! She already walks like an old person.” 

I didn’t know what to think. Was I just picked for roles because I had cerebral palsy? That wasn’t what I wanted at all. I tried to convince myself it didn’t matter, because I had fun playing Doc. But it did matter. I wanted to portray different imperfections. I didn’t want to always play people who were old and clumsy. I am a young person, and I want the opportunity to portray characters from all walks of life.

From that point on, I decided (subconsciously, because I didn’t even realize I was doing it) to hide my CP, at least while doing theatre. I wasn’t trying to be dishonest; hiding cerebral palsy seemed to be the only way I could try to make friends in theatre and be seen onstage for something other than my limitations.

Although my cerebral palsy generally is considered mild—I can speak and walk—hiding CP quickly proved to be more difficult than I thought it would be. Choreography (the movements and blocking of the characters onstage) is a big part of theatre and usually requires a series of quick, often complex movements. I couldn’t and still can’t quite move fast enough to blend in with the rest of the ensemble. I stick out onstage because my movements are too slow, or a beat too late. 

Often, I got trampled because I didn’t respond to my onstage cue quickly enough, and everyone else rushed through the backstage curtain. I decided that for the time being, moving quickly was more important than my safety. 

And that brings me to ninth grade, where my hopes of hiding CP during theatre to be accepted and not underestimated as an actress ended with a resounding thud—namely, my knees slamming into the stage floor.

In hindsight, my castmates probably realized I was different long before that moment. A staircase leads to the stage, and I need help on the stairs. I have falling anxiety, which means that I have a fear of falling down. (That is a little ironic, because there was a time in eighth grade where I would fall twice a week, on average.) But I’ve never gotten used to falling down, and it’s always been an embarrassing experience for me. For the first few week of ninth grade, my theater teacher would help me up the stairs. It was fairly awkward—as much as I appreciated her help, I hated the fact that I had to bother her to ask for help. There was and is a part of me that believes that I should be able to climb the stairs by myself. Because my feet rotate inwards as I climb the stairs, though, I’m very likely to trip, so doing the stairs by myself is not always an option. 

And then my classmates started to help me. I was incredibly grateful. None of my classmates in past years had ever really tried to help me before. I was pleasantly surprised that my classmates were being so nice and accepting. They were all older than me, so I guess I thought that they would be mean. (I have not had the best experiences with some people.) However, I started to make friends in theatre! Everyone was extremely kind. I was hesitant, waiting to see if there was a catch. I knew I would do something weird, and then that would be the end of my friendships. I’m so happy to say I was wrong. 

Then came a potential obstacle—I was cast in a scene in which I had to run. I loved the play we were going to perform—called Peter and the Starcatcher, the show is the prequel to Peter Pan. The first time we rehearsed the scene, I attempted to speed-walk. I wasn’t quite fast enough, though. So I decided to just get onstage as quickly as I possibly could. 

That decision resulted in me face-planting onstage. I was really embarrassed, but all my classmates were asking me if I was okay. I apologized for messing up the scene, but everyone was very reassuring. No one seemed to think it was funny that I had fallen, but no one thought that I wasn’t capable, either. I was happily surprised. I was pretty sure that I’d hurt the ligaments inside of my knee as I limped offstage, but then I realized that the fall hadn’t been all bad. Not even close.

Because of my fall, I realized that what I had were true friends—who didn’t want me to fall, but would be there to help me and comfort me if I did. Yes, we were all actors, but when it came down to it, they cared more about my well-being than if I messed up the scene. My theatre friends were somewhat aware that I was different, and it was okay with them. They never acted like I was a burden, just their friend.

In the end, I wanted what all actors and actresses want—a chance to act. I’m able to act now. I don’t have to hide a part of myself in order to do that anymore. Maybe I never did—I just needed the right people in theatre and in my life. 

In theatre, I am accepted for who I am. I have amazing friends who are so helpful and see past my CP, which is a big part of me but a part that in no way defines me. I don’t have to act like someone I’m not in order to be accepted. I can just be myself, no matter if I struggle sometimes. Because even if I struggle, I have friends who will support me, and the show will go on. 

“Difficult” Doesn’t Always Mean “Bad”—Life Is The Most Precious Gift I’ll Ever Get

 “Don’t pray for an easy life. Pray for the strength to endure a difficult one.” —Bruce Lee

Recently I have had a hard time accepting the world for the way it is. The world is not always a kind place, sometimes especially to people who have disabilities or other challenges. I don’t say this because our lives may be harder. No, as we all know, so many blessings come from leading a life of adversity. I say it because of the views that people have on the lives of others who deal with adversity.

In biology class, we are learning about Duchenne muscular dystrophy and the ways that the people who have DMD are affected. I am naturally interested in this topic as I like learning about other disorders/disabilities and the muscular system. Also, cerebral palsy and Duchenne muscular dystrophy share some similarities.

If you don’t know, Duchenne muscular dystrophy happens when the protein dystrophin is genetically altered. Dystrophin is a muscular protein that protects and strengthens muscle fibers as muscles contract and relax. However, there is either a lot less dystrophin or a total lack of it in people who have Duchenne muscular dystrophy. People with Duchenne muscular dystrophy have a lot of creatine kinase, which is an enzyme that stores energy for myocytes to use during contraction. However, when people who have DMD exercise, the cell membrane tears, causing creatine kinase to leak out of the cell and into the bloodstream and the muscles to atrophy. DMD is a degenerative condition, which means it gets worse over time. (People with DMD generally live until their mid- to late twenties to early thirties.) 

On the other hand, people who have cerebral palsy (CP) have a usual life expectancy, except for in rare cases. Cerebral palsy is not degenerative, but it could be considered progressive. People with CP move in an unnatural way that is very hard on the body. Eventually, this can cause joints and tissue to break down. Over time, aches and pains get worse because the muscles are too spastic and tight to move and stretch.

Ultimately, both conditions result in more limited mobility (even slightly) and ambulatory devices such as leg or ankle braces (AFOs), walkers, canes, crutches, and wheelchairs are common. Most people think that CP and DMD reduce quality of life. It’s true that CP can be hard to live with sometimes. I am in a lot of pain and it is difficult to move around, but my quality of life is amazing. Even on my most painful days, there is no part of me that wants to cease the will to live. 

That’s probably why I was so mad in Biology when a boy said, “If I had DMD (or if my muscles didn’t work) then I’d kill myself.”

It might sound a bit odd, but the first thing I thought of was the book Wonder by R.J. Palacio. In the book Wonder, the protagonist, August “Auggie” Pullman, has several craniofacial differences that cause him to be judged by his classmates. Gradually, his classmates learn the lesson “don’t judge a book by its cover”, but his classmates had no idea what Auggie’s life was really like and viewed it negatively. Specifically, I thought of the scene where the class was dressed up on Halloween and the character Jack, who was dressed as a mummy, said: “If I looked like him, seriously, I think I’d kill myself.” Auggie described, “I felt like I’d been kicked in the gut.” In that moment, I felt the same way.

The boy in my Biology class saying, “If I have DMD, then I’d kill myself,” was probably a knee-jerk reaction. People fear the unknown. With DMD being degenerative, it could mean a loss of independence. Most kids my age have no idea what it’s like to depend on other people for mobility. DMD leads eventually to death. I guess the boy meant that living a shortened life knowing that independence would decrease until an early death would be scary. No matter how early death comes, life is beautiful while it lasts.

Who are we to judge someone else’s quality of life? If you don’t live that person’s life every day, if you don’t feel what that person feels, how could you choose to end the person’s life automatically? How could someone diminish what someone else’s life is worth just based on a diagnosis? As I say this, I know that there are others out there who would feel that they, too, would end their lives if they had a potentially devastating diagnosis. But how could you make that choice if you don’t know what it’s like to live that life?

I guess I was affected by the boy’s comment on a more personal level as well. Often, I feel like it’s my job to advocate for all people with disabilities—not just people who have CP. 

No, I don’t know what it’s like to live with DMD—but I do know how it feels to have a loss of independence. 

I know what it’s like to not be able to keep up with others your age. 

I know what it’s like to be in pain every day—pain that is constant and stabbing. 

I know what it’s like when your body does not do the things you want it to do. 

I know how it feels when it seems that your body should be able to support you, but it’s buckling instead.

I know what it’s like when others judge you based only on your condition.

And, by the boy’s statement that he would kill himself if his muscles didn’t work, I felt personally impacted. My muscles don’t work the way that most other people’s muscles do. That’s okay. But what I don’t know how to deal with is someone assuming that my life isn’t worth living. 

I don’t understand how people could think that my life isn’t worth living.

My life is worth everything to me.

And yes, having CP has given me a lot of challenges—probably more than my fair share. But CP has also given me an abundance of blessings, and I should never forget that. I hope I never do. 

Because of CP, I have gotten to meet people that I consider family. I have gotten to write for many platforms such as The Mighty, The Cerebral Palsy Foundation, and MSN. I have been gifted a bike by the McLindon Foundation and have been featured on WAFB. I don’t say this to brag, but to demonstrate that having CP isn’t the awful life sentence that some people might assume when faced with the facts of the diagnosis.

Even if I had not have had the opportunities to write and share my story, there are so many simple things on a daily basis that are worth everything to me. Laughing with my family. Going to school and learning new things. Talking with my friends. Hanging out with my twin sister. Playing with my beagle (who is quite possibly the most adorable dog in the world). Writing. Swimming, which is the most freeing feeling I can imagine. 

My life is very difficult sometimes. I feel like I didn’t get as much of a chance to be a kid—I couldn’t run or do physical activities very well and I am always going to doctor appointments and such things. But just because I may be frustrated with what is hard for me doesn’t mean I’m ready to give up on my life. And I’d be willing to bet that people who have DMD feel as though their lives are worth everything, too, no matter how hard having DMD is. 

The fact of the matter is that we, being humans, can only work with the cards we’ve been dealt. There is no reshuffling, no quitting the game. Some people’s deck contains a DMD diagnosis or cancer or CP or another difficult circumstance. But it doesn’t mean we give up. And it doesn’t mean that just because we got a hard deck, we quit the game. Life doesn’t work like that.

I felt like maybe the boy knew himself—maybe he couldn’t handle life with a lifelong challenge. I didn’t know if he could walk in my braces, if he could spend hours upon hours practicing how to write, how to climb stairs, how to stand up. I don’t know if he had the perseverance to try to keep up with his peers even though he would fail, to deal with people’s negative comments, to face insecurities about something he couldn’t help. And even though I have had to work hard and I struggle with many physical things, there is so much I am able to do. My life is so far from worthless. No one’s life is worthless. But I find myself wondering if the boy could truly handle mine—and still realize, through all the challenges, that there are countless rewards and blessings.

Someone can live an extremely amazing life while having a disability. You don’t have to overcome your disability, or challenge, or condition, to live an awesome life. Please think twice before assuming that life with a disability is awful. All lives are worth something. To me, life is worth everything.