My Fairytale Might Look Different, But I Still Want A Love Story

 I have many fears—falling. Losing my loved ones. Being forgotten. Another fear I have is being alone. I’m sure many people have that fear, but for people with disabilities it may be stronger.
I wonder a lot: Who could ever love me?
I have the fantasy of walking beautifully, of the scars on my legs fading, never falling down. I think that one day I will wake up and my hip pain will be gone, that one day someone will touch my shoulder or hip and I won’t flinch away from their touch.
That fantasy will never be a reality. I try my hardest not to be difficult, but my reality is this—it’s hard for me when people touch me. I have hypersensitivity. I keep thinking that one day someone putting their hand on my hip will feel nice, or someone putting his arm around my shoulder. But what I wish for and what CP demands are often two different things. 
I see older couples walking around and holding hands, and I always gush over it. But who will want to hold my hand if it means I might fall down. Who will be okay with steadying me for the rest of his life? I wouldn’t want any significant other I have to resent me. Will my husband be ashamed of having a wife with cerebral palsy? I don’t want anyone to settle for being with me. I want someone to marry me because he wants to, not because he feels obligated.
Who won’t think I’m ugly? The scars I have aren’t pretty. A lot of people admire legs. Not mine. My legs are scarred and deformed. I hate thinking of myself like that, but who wouldn’t see me that way? 
Not to mention the emotional scarring. Often I let people see me at my weakest because I don’t have a choice. I may seem intelligent, but deep down I don’t have a lot figured out. I am extremely insecure deep down. Is there anyone who can tolerate my insecurities and baggage? I don’t know. I’m still learning to live in a body that works against me. Who will believe that I can’t sense where my feet are in space? Many people who share my condition find that their mobility decreases when they reach their thirties because spasticity and tightness is hard on joints. Who will want to vow to spend the rest of his life with a woman who might not always be able to be independent?
My days change. Sometimes I’m okay and my legs are manageable, and sometimes the pain and spasticity makes me want to break down and cry. Who would ever put up with that? My physicality varies. Sometimes my balance is great and sometimes it’s awful. My CP is unpredictable. When people date, they take time to get to know their partner. Who will take the time to know my CP, too?
My surgery has changed a lot for me, but I will never be cured. My nerves and muscles will never work together the right way. I might be able to hide my CP sometimes, but it always manifests itself eventually. I will never be able to move my legs like everyone else. Whether my surgery lengthened my muscles or not, whether my femur is straight or not, cerebral palsy will always be a safety concern for me. 
I don’t want my significant other to automatically see cerebral palsy when he looks at me. I’ve never wanted to be defined by the one element of my life that makes me feel the most fragile. But if my partner ignores my CP, he is ignoring a part of me that will forever be in my life. Whether I always wish that my cerebral palsy was there or not, it doesn’t matter. I have to keep CP in the back of my mind to know my limits. I hope my loved one will understand that while I don’t want him to see me as my cerebral palsy, I hope he accepts my cerebral palsy, too.
I hope that I will be able to find a partner who loves me for all that I am. I hope that I will get married to the love of my life who won’t be bothered by all the challenges that living a life with me threatens to have. I just want to be loved, regardless of what I can or can’t do. I’ve gone through a lot and have baggage that no husband would expect. I’ve dreamed of a fairytale-type love story. I know that I’m not the typical girl in those stories, but maybe it can be different and still be beautiful anyway.

Why Stage Combat Is A Real Battle For Me

 In my theatre class, the pool noodle shook in my grip as I pointed it forward at my scene partner.

Take a step. Just with your right foot. Move the noodle, but not your hand. Bring it up, in an arc. Move backwards, but not too slow. Wait for her signal. Don’t overreact. 

All these thoughts and more cycled through my head as I tried to apply the instructions for stage combat. Remembering the instructions was the easy part—applying them was an entirely different story. 

When my theatre teacher had announced that we were going to start our stage combat unit, I almost immediately began to feel anxious about it. I had glanced around at my classmates, noticing that they all were excited and were planning their “attacks”—albeit fake. I tried to put the thought of stage combat out of my mind until the time actually came, knowing that worrying wouldn’t really do any good.

And today, that time came. I went into class feeling anxious—actually, scared is probably the more accurate word. I know that sounds stupid, seeing as how we were fake-fighting with pool noodles, but I also was aware of the fact that having cerebral palsy can complicate even some seemingly harmless activities.

After we finished watching the safety videos—which my eyes locked onto like my life depended on it, as I tried to absorb everything about stage combat that I could—my teacher made a beeline for me. She very considerately asked how I was feeling.

Ordinarily, I would have lied and said that I was feeling fine, but I figured there was no point. She had probably seen the look on my face. If there was any way she could help me, I had to be honest.

“Nervous,” I admitted, letting out my breath.

She nodded, seeming unsurprised by that, and said that as long as I was safe and that I learned something, nothing else really mattered.

I faced my scene partner, clutching the pool noodle so hard that my knuckles turned white. She smiled reassuringly, like stage combat was the easiest thing in the world.

I was tempted to tell her that she had no idea what she was in for.

“Do you want to be the victim or the aggressor?” she asked me calmly.

Feeling extremely incompetent, I stammered, “Um—um—the victim, I guess.” My teacher had told me that the victim has all of the control, and that sounded reassuring to me. I had no idea what I was doing, and I knew that no matter how much I wanted to cooperate, my scene partner’s patience was going to be tested.

When I agreed to be the victim, I didn’t realize that the victim had to perform a series of complicated movements. All the supposed “control” meant nothing because I couldn’t move the pool noodle the way I was supposed to. To my scene partner’s credit, she tried to coach me. I was supposed to move the noodle in an arc over my head, but my hand would twist the wrong way in the process. I had no control over my grip, and while I understood what I was supposed to do, I couldn’t make my hand do it. (In simple terms, my brain has trouble communicating with my legs and hands sometimes because of my CP. Most of the time, I find ways to work around those issues, but it’s not always something I can avoid.)

After we both realized that the role of the victim just was not going to work for me, I switched to the role of the aggressor. Having cerebral palsy means that sometimes you have to adapt. A lot of activities just aren’t designed for people with CP, so I have to learn to make things work for me.

All the aggressor has to do in stage combat is thrust the pool noodle forward. However, for the first several times, I accidentally pointed the noodle down instead of straight, and I couldn’t tell. Then it was time to add footwork, and I realized that I didn’t know how to move my feet and the pool noodle at the same time.

I know it sounds simple. My nerves and muscles don’t really work together very well, though, and that makes it hard for me to do two physical actions at the same time. Muscle memory helps, but I don’t have much coordination—even if the actions themselves are simple, put them together, and I get lost.

I kept reacting preemptively before my partner would even point the noodle in my direction. I knew that I wouldn’t get hurt even if she hit me with it. But sensory-wise, I have a startle reflex, which is kind of like a heightened instinct. My partner laughed gently and assured me that I would be fine as long as we maintained eye contact. I believed her, but the stage combat became very frustrating.

The teacher told the class that we could go faster. By themselves, I understood the movements for stage combat, but how to move was muddled in my head. Eventually, my partner and I just took things at our own pace.

Doing stage combat was scary. But what I learned is applicable to more than the stage. I can go beyond my limits and do something even if it scares me. Doing things my own way with cerebral palsy is difficult at times, but I learn to do things that challenge me, and how to adapt and persevere.

I may not have learned how to do stage combat very well, but what I did learn is much more valuable—I may have to go more slowly. I may have to adjust the way I learn. But my greatest strength is that I try, no matter what. 

How Swinging Is Beneficial For Me

 Swinging being helpful might sound simplistic, but to me, it’s not. I have loved to swing since before I can remember. There’s just something special about being up in the air and knowing that you’ll come back down to earth again.

Swinging has always calmed me down. When I was little, it felt exhilarating. I could feel the sweep in my stomach, the seemingly lost control, and then I would be right back in my parents’ hands. 

I started walking later than most toddlers. Even so, swinging was a type of movement. Although my legs weren’t moving the way they were supposed to at the time, I still was able to swing with my parents’ help. My mom or dad would just plop me in the swing and I would be happy.

Eventually, I learned to walk, but I never could do as much with my legs as others my age. My sister started playing soccer. My friends played tennis or did ballet or dance. I had extracurricular activities, too, but it wasn’t the same.

It took me a while to get the hang of swimming (kicking my feet was difficult), but swimming soon gave me the same feeling as swinging—freedom. Around third grade, I started horseback riding on a sweet pony named Chino, which was a beautiful experience for me. I rode Chino for about 4 years, which I loved. Chino and I had a very special bond, but sadly he passed away in 2021. After Chino’s passing, I took a break from horseback riding.

I have continued to swim every summer in my swimming program for kids who have physical disabilities, Geaux Strong, and I do hydrotherapy. My point is, swinging and swimming both give me an amazing feeling of freedom in a world where the things I can do with my legs is limited. 

I learned to swing independently over quarantine due to the COVID-19 pandemic in 2020. I had a lot of spare time, and my mom (and physical therapist, over telehealth sessions) taught me how to use my legs to swing by myself. I actually learned how to swing in AFOs, which was challenging, as you can probably imagine, but it was so worth it.

After I had finished my schoolwork for the day during quarantine, I would go outside in my backyard and swing. I also found it so amazing to watch my legs and feet in the air. It was even more freeing to swing by myself than it had been when my parents pushed me. 

Swinging helped (and continues to help) me a lot with the “blah” feeling I battle often. Feeling “blah” is when I don’t feel sad, but I don’t necessarily feel happy—a little numb, in a way. Being outside and feeling the wind in my hair makes me feel refreshed again. Swinging, especially, reminds me of all that I am able to do and makes me happy. 

Even though CP complicated my swinging sometimes—it took me a while to swing independently, and as my hip pain continued to get worse, my dad had to switch out the swing—we always found a way around it. 

Swinging independently was something that my cerebral palsy could never take away from me.

…Until I had femoral osteotomy surgery in the summer of 2023.

My surgery brought me a lot of good things, but there were some things it took away as well. After my surgery, I had to relearn how to sit, walk, and I’m in the process of learning how to run in a way that works for me.

A few weeks after surgery, I sat on our swing and let my dad push me. I couldn’t tolerate it because it hurt my hips too badly, but I told myself I’d try again soon.

Several weeks later, my mom brought me outside with our dogs, and I sat on the swing and rocked myself back and forth with my right foot.

It was bittersweet for me. I had missed being outside with my dogs, and the “blah” feeling was made better by sitting on the swing. But I missed propelling myself on the swing—something I had worked so hard to be able to do. It may not seem like a big deal, but every physical thing I do does not come easy for me, so I treasure what I am able to accomplish. To experience a setback in my abilities (even temporarily) is really tough.

I started trying to push off from the ground to get myself higher in the air. My feet scuffed the ground. It didn’t work, and it didn’t give me the same feeling I had before surgery. I was disappointed. 

The summer I recovered from my femoral osteotomy was one of the most emotionally and physically draining experiences I have ever had. I needed something to give me the freedom I so desperately wanted, and swinging would have been ideal. I couldn’t swim for several weeks after surgery. My pain medicine made me loopy, so when I would have turned to writing as an outlet, I couldn’t. 

Swinging is such a beautiful and beneficial thing for me. It reminds me of the good things about my legs when I struggle to see it. Swinging lets me have freedom when I want to go somewhere else, even if I’m just in the air for a few seconds. Swinging makes me happy, and the value of that really can’t be measured. 

So yesterday, when I was feeling “blah”, I went outside to my backyard and sat on my swing. Our puppy, Pickle, sat under the swing and pushed her head into my hand as I rocked myself back and forth with my right foot. Maybe Pickle sensed I was feeling sad, or that I wanted something from swinging that it couldn’t give me, at least not right now. I don’t know what it was, but she sat with me under my swing for at least 10 minutes.

 My dad came outside and gave me a push. As the swing released and I felt the familiar, exhilarating swoop of my stomach, I didn’t feel “blah” anymore. (And yes, Pickle’s “dog therapy” helped.)

Sure, I can’t swing by myself right now. But I trust that will come with time. For now, I like my dad pushing me, like he did when I was little. I’ve changed a lot since then, but I still love the security of my parents behind me, their hands on the swing.

In the meantime, until I relearn how to swing, I’ll appreciate what my surgery gave me. I’ll appreciate Pickle’s face peeking up at me. I’ll appreciate my dad pushing me until I can swing independently again, because as I remind myself, it’s okay to need help sometimes.

 And I’ll appreciate the feeling of “flying” in the air, as my “blah” mood disappears. 

How I’m Aware of My Cerebral Palsy on National CP Awareness Day

 

I realized today, on National Cerebral Palsy Awareness Day, that this day is for both people who have CP and the people who don’t.

I am aware of cerebral palsy every day.

My CP is mild and nearly invisible, but that never makes it invisible to me.

I am aware of cerebral palsy in the way I move. Every step I take, it’s there, waiting for me to feel it. When I go from a sitting to standing position, my cerebral palsy moves right along with me. I can feel the spasticity in my muscles, reminding me that CP is my lifelong companion, like it or not.

And sometimes…I don’t like it.

I went to see my counselor today. Somehow, we were talking about cerebral palsy, and she said, “You know, I don’t think your disability is the most interesting thing about you.”

I said, “Thank you.”

She looked at me sadly. When I asked her what was wrong, she told me, “The only people who tell me ‘thank you’ for not thinking that something about them is interesting are people with disabilities.”

I sat quietly, letting that sink in for a second.

She continued, “If one of my clients is a lawyer and I tell her that I don’t think her job is the most interesting thing about her, she would be offended.” She looked me directly in the eyes and said: 

“You’re not offended, and that crushes my heart a little. Your disability is sometimes like a curse that hangs around you, and sometimes it’s all people see. I’m guessing you’re relieved that I don’t think your disability is the most interesting thing about you.”

I hadn’t ever thought of it like that before, but she was right. 

I admitted, “My CP is a blessing, but sometimes it feels more like a curse.”

There are times on my worst days when I wonder if I did something wrong in a past life to be given CP. I still have insecurities. Most days, though, I am able to tell myself that everything happens for a reason, and I was put on this Earth with cerebral palsy to help others.

Why am I saying this on Cerebral Palsy Awareness Day? I guess to make the point that I have lived with cerebral palsy my entire life, and while I am aware of it every day, I am not fully aware of its emotional impact on me. 

CP Awareness Day is just as much for those of us who live with CP as it is for the people who don’t. While it is important for us to remind people that cerebral palsy exists in different forms, it is just as important to be aware of our mental health surrounding CP. 

My counselor helped me see that while I celebrate Cerebral Palsy Awareness Day, maybe eventually I can embrace my cerebral palsy for all that it is. My CP helps me empathize with others and to understand who I want to spend my time with. Cerebral palsy can show me the beauty of humanity; sometimes I just have to be patient to see it.

I am slowly understanding awareness of my cerebral palsy, and it is my hope that I spread awareness through advocacy. I’m still working on being aware of CP within myself, and then I’ll try acceptance.

Wherever you are on your disability journey—whether someone you love has CP, you do, or you’re still trying to accept your cerebral palsy—happy National Cerebral Palsy Awareness Day. 💚

When I Was Called “Vegetable” and “Cripple” In The Hallway

 I will never be fast enough. I will never be “able-bodied” enough. I’ve accepted that. It’s time the rest of the world did, too.

I was walking in the hallway at my high school in a long line of people waiting to get in the door. I was trying to go as fast as I could, but that is not a very impressive speed. 

Two boys were behind me, and they were messing around while we were walking to the door. I didn’t want to be late to class, so I tried to increase my pace.

It wasn’t enough.

“Cripple,” I heard the boy behind me say.

“She’s like a vegetable,” the other boy laughed.

A vegetable is a person who is so severely impaired mentally or physically as to be largely incapable of conscious responses or activity. I do not have any intellectual disabilities. I am ranked third in my class of almost five hundred students. I am enrolled in honors and college classes. I do have cerebral palsy, but it does not define me, or make me a “cripple” or “vegetable”. I had tried to walk as fast as I possibly could. I’m just unable to pretend that I have no physical limitations.

And then I heard my friend’s voice. She inserted herself between me and the boys and told them off for what they had said. 

“That was him!” one of the boys blamed the other one. It didn’t matter to me who had said what; it was incredibly cruel either way. 

“You just keep walking, Ainsley,” my friend assured me. “I don’t see anyone ‘crippled’, do you?”

I shook my head, unsure what to say. My head was spinning, thinking of comebacks I would never utter, reasons why anyone would ever say these things to me.

The rest of the walk was a blur. My friend was beside me, which I was grateful for. “Thank you,” I told her. “Thank you so much.”

“No problem,” she said. “That was so incredibly rude.”

This experience taught me that for every hateful person in the world, there are so many kind people who do the right thing. My friends and family, and the people who love me, know my worth. They know that I am so much more than the way I walk. 

The rest of the world doesn’t matter.

As I walked to my next class, I was reeling. But in the end, I won’t remember who called me a “cripple” or “vegetable”.  I’ll remember how my friend was kind, instead of the people who were not. I’ll remember my friend, who stepped in and reminded me of what matters when I needed it most. 

It’s Okay To Grieve Having Chronic Pain

 Life moves at a very fast pace. As someone with cerebral palsy and chronic pain, I know that all too well. I try my best to keep up with others because I am determined, but often that means pushing things down—the pain and emotions.

Mostly, my chronic pain is in my hips (near the bursa sac for the more medically-minded people). I have had it for almost seven years now, which feels like a very long time. Because my pain doesn’t really change, I tend to believe that it is pointless to complain. I’ll always have the same thing to say: “I’m hurting.” I try to keep going and ignore how I really feel about what is happening to my body.

You never really get used to chronic pain, regardless of how long you’ve had it. Because it is my new normal, I try to adapt to it. Spoiler alert: In my mind, “adapting” to the pain means trying to pretend it isn’t there. Does that ever work? No.

The pain in my hips is aching at best, debilitating at worst. However, as long as my organs were intact and my joints weren’t wearing down, I told myself I could handle it. My legs have always been the part of my body that I’ve gotten used to not being the way I wish they were. Hip pain is just a very painful reminder of that.

Two weeks ago, though, the fingers on my right hand turned bright red and began to swell. Soon it hurt to bend my fingers. Typing quickly was a struggle. Opening things got harder. Buttoning my uniform shirt made me wince in pain.

I do so much with my hands, and the soon undeniable fact that I was losing functionality made me mad and desperate. I don’t have an answer to why I have chronic hip pain. I couldn’t stand it if I never got an answer for the pain in my hands.

Then I went to my hydrotherapy appointment. Hydrotherapy is a form of swimming therapy that works well because you don’t have to bear as much weight in the water. Everything is looser. I move so much more easily in the water, and as a result I can usually ignore my pain for the time being.

Not that day. I was at a breaking point. My fingers were swollen and aching, I’d had to type and write a lot, and the hip pain that stayed with me was relentless. 

“I’m so tired of being in pain all the time,” I admitted in a rare moment of exasperation and utter exhaustion. “It’s really, really hard.” 

I shut my mouth, feeling horrible that I was complaining to the person who was trying to help me feel better.

“I’m sorry,” I apologized. “Now I’m complaining to you.”

My PT swam alongside me and said the words I’d needed to hear for years: “Don’t apologize for complaining to me. I need to know if you’re in pain. You can’t bottle that kind of emotion up; it needs to go somewhere. Talk to me, talk to anyone. I don’t understand your pain completely, but I know it’s hard.”

Such relief coursed through me in that moment. I was so tired of saying “I’m fine” when I wasn’t, forcing a smile when I wanted to scream that I wasn’t supposed to feel so old and my legs were betraying me.

I grieve that I have chronic pain. I skipped right over the denial stage; pain like this is hard to deny. I waver between anger, sadness, and acceptance.

Chronic pain is called “chronic” for a reason—it doesn’t go away. So really, I have no other choice but to accept my pain. 

Still, I miss the person I was before my leg pain took over, although I don’t remember who she was. Someone who was a lot less irritated, probably. The person I was before could do more, just because I didn’t have so much pain inside me. I miss that girl. I want her back.

I miss walking around and feeling spasticity, but no aches. I miss being able to tell my family that I wasn’t hurting and meaning it. I miss being carefree about a diagnosis. Now I care because I want answers.

I’m angry because I don’t want to be in pain for the rest of my life. I’m sad because of what I’ve missed out on. I am, at least, relieved that I don’t have to bottle this up anymore. It’s okay to grieve having chronic pain. I’ve heard the old adage “You either laugh or you cry”. It is healthy to laugh at times, but it’s okay to cry sometimes, too.

What I Wish I Could Change About Living With A Disability In Society

 TO THE UNITED STATES SPONSOR FOR DISABILITY RIGHTS
Dear Sara Minkara,
My name is Ainsley Hale, and I am from Louisiana with spastic diplegia cerebral palsy. My hope in life is to one day be an advocate for people with disabilities. Throughout my life, I have been exposed to the injustices and discrimination that people who have disabilities—like myself—have to face daily. While I am pleased that there is now an ambassador for disability rights, equality for people with disabilities has a long way to go.
Firstly, accessibility must be improved. I am aware of the lack of accessibility in the White House press room. I am thankful that a reporter raised the question of where the seating was for disabled journalists, but unfortunately the question was ignored. The lack of accessible seating in the White House should be fixed. Furthermore, there is a lack of accessibility almost everywhere, not just the White House. For example, many buildings have stairs without ramps or elevators. I am ambulatory, but there have been numerous times where climbing stairs has been a struggle. Considering that cerebral palsy is the most common permanent disability, I know that I am not alone in this struggle. People who have disabilities should not be forced to climb the stairs in order to get where they want to go. Installation of working elevators or ramps should be mandatory in all buildings with stairs.
Another issue that many people with disabilities face is a lack of accessible parking. Most places that I go only has a maximum of three to four accessible parking spots in the parking lot. There have been many times where I have not been able to use an accessible parking spot because all of them are full. In addition, towing of vehicles that do not have a handicap placard should be more strictly enforced. It is absolutely not fair for people who are capable of walking longer distances to take up an accessible parking space just because it is more convenient. Being disabled means having to adapt in a world that is not equipped for you. Almost nothing is convenient for someone who has a disability. My parents and I have had to struggle to get accommodations. A parking spot should not have to be a daily struggle. My sister has recently learned to drive, and she can park the car anywhere because she is not disabled. Parking will not be that way for me. I will try to save myself from extra pain, which means parking in an accessible space. It would be so much easier if people who did not need accessible parking were not allowed to use it.
In addition, importance of disability rights must be emphasized. When the interaction between the press secretary and the disabled journalist occured, it brought up more than the topic of accessibility. It was upsetting to me that seating, such a necessity (especially for people with disabilities) was overlooked. Nearly 15% of Americans have a physical impairment. When the reporter posed his question, he was not simply asking for himself, but for all people with disabilities. Despite the ADA, discrimination toward people with disabilities is a common occurrence. 
A common obstacle I have experienced is using the elevator. Using the elevator should be simple. However, due to how mild my cerebral palsy is, I do not appear like I have a disability. I have been embarassed several times because of people’s reluctance to allow me to use the elevator. I agree that people who have disabilities should be prioritized when it comes to using elevators. Despite what people think, I do have cerebral palsy, and climbing the stairs is extremely strenuous because of my spasticity. Though I know you can’t change what people think, I wish there was a way to prove that using the elevator is necessary for me. It is often degrading when people question me about my right to use the elevator. It should be easier.

Throughout my life, I have faced discrimination. In elementary school, physical education was a mandatory class. Because of my cerebral palsy, I had to wear AFOs, leg orthotics (braces). In PE, everyone was required to run around a mile-long track. My grade was docked because I could not run a mile. This experience has stuck with me because of its unfairness. My CP is so mild that often I am expected to do things that no one with a physical disability should have to. I suppose what I am asking for is equity. According to “Global Disability Rights”, only 5% of people who have disabilities use a wheelchair. However, the common protrayal of disabilities in society is a person in a wheelchair.  I believe that a disability awareness campaign would be beneficial to show society that disabilities can come in many different forms, not just use of a wheelchair.

People who have disabilities are the largest minority group in the United States. So why are our rights not prioritized? Why does a reporter’s question—in the White House, of all places—not spark change? I do not want other teens like me growing up to realize that we have fewer options than our peers, simply because of differences that we have. Why is this fair? It is the twenty-first century, and it is time that people with disabilities get the injustices we face recognized. Please help me effect change for people with disabilities—it may give other people perspective as well.