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. 

What I Would Like My High School To Know About Being In A Wheelchair

 To my high school:

I haven’t been in a wheelchair very long. I need it because I had a major surgery called a femoral derotational osteotomy. (Yes, I am the girl who probably left scuff marks in the classroom doorways and probably ran over your legs or feet once or twice. Sorry.) A wheelchair is useful for my safety, but I would not choose to use one otherwise. It might look easy to not walk around school and sit in a wheelchair instead, but it’s not easy. I am in pain every day, even when I do sit in the wheelchair. I am much shorter sitting in it and I feel like less of a person. That being said, there are a few things that would help me greatly. Here are a few do’s and don’t’s for interacting with me (and other people) in a wheelchair.

DON’T’S:

• Please do not stand directly in front of me (for example, at an assembly). In the wheelchair, I am much shorter than I am while standing. I can’t see if someone stands directly in front of me. It makes me feel like I don’t matter.
• Do not shut the door on me when you see me coming. Honestly, I feel like it should be common courtesy to hold the door if you see anyone approaching the door, but I can’t reach the door to hold it for myself in the wheelchair. Many people have shut the door on me, and I have just had to wait for someone else to come along, which is really embarrassing. It only takes a few seconds to hold the door for someone, and I promise that those extra seconds make a big difference to me. 
• Don’t cut right in front of me when I’m trying to go somewhere. I understand that I move slowly, but no matter if I do or not, it’s still really rude to cut in front of me. I will move to the side of the hallway if I see that you’re in a hurry; I do feel bad for holding people up. But if you cut in front of me, you run the risk of getting run over. I don’t mean to, but it’s harder to stop the wheelchair while it’s rolling than you’d think. (See my note about getting run over by the wheelchair below.)
• Please do not block the doorway or hallway. I get it. I love talking to my friends between classes when I can, too. But I don’t have the luxury of time. Whether I’m walking behind the wheelchair and pushing it or propelling it with my arms, it takes a long time for me to get to class. It takes even longer when I have to wait for people to notice me and move out of the way. Please be mindful if you are blocking the doorway or hallway. We all have places we need to be. If you have the time to just stand there talking to your friends, I can’t accommodate you. I don’t want to be rude by yelling “excuse me” if you don’t hear me the first time or trying to roll past you, but I’d really rather not be late to class because other people are in the way.
• Don’t make a big deal if you trip on the wheelchair or if I accidentally run over you. I promise, I do not mean to run over people. But when people move directly in my way or cut in front of me, sometimes it happens. I’m always looking where I’m going, and I need the same consideration in return. If you do trip over my wheelchair, I know it hurts. But please don’t give me a dirty look because it’s not my fault you tripped. My wheelchair is not there to inconvenience anyone; however, sometimes it does. I have to get by in a world that is sometimes not equipped for me, and if you trip over my wheelchair because you’re not paying attention to where you’re going, there’s really nothing I can do about it.
• Please, please DO NOT push me without asking. I can propel myself, and it is really degrading when people come up behind me and start pushing. Just because I’m in a wheelchair does not mean that I can’t make my own decisions or do things for myself. When people push me without asking, it takes away the ability I do have. I can still do things on my own even though I’m in a wheelchair. If you push me without asking, I’m sure people usually mean well, but it means I don’t have a choice. I don’t have any control over the situation if people push me without asking, and I already don’t have enough control.

DO’S:

• If you see me struggling (or if you think I’m having trouble), please do offer to help. There have been several times that I have struggled to open a door and people have stood behind me and just watched. There is a big difference between offering to help and swooping in and doing something for me. I would really appreciate an offer to help if I do look like I need it.
• Please do watch where you’re going. It can pose a danger to us both if you don’t. I know it hurts when you collide with the wheelchair, and it also hurts me. When people ram into my wheelchair, it jolts my legs (including the one I just had surgery on, which really hurts). I will watch where I am going; all I ask is that you please watch where you’re going, too.

I know that I am not entitled to these things above, but it would be very helpful and make my day more tolerable. It is really hard for me to accept being in a wheelchair because I need a lot more help. Many people are very inconsiderate when they interact with me, but the only thing about me that has changed since last year is my mobility. I would so appreciate a little more consideration. The world isn’t always built for people who have differences, which is frustrating, but the way I see it, we can all learn from each other. We just have to have empathy. The fact is, both people with and without disabilities exist in this world, and it is my goal to make the world safe for both. 

Forgiveness & Living As God Says

 “Bless those who persecute you; bless and do not curse them.19Beloved, never avenge yourselves, but leave room for the wrath of God;* for it is written, ‘Vengeance is mine, I will repay, says the Lord.’ 20No, ‘if your enemies are hungry, feed them; if they are thirsty, give them something to drink; for by doing this you will heap burning coals on their heads.’” —Romans, 12:14-20

What is forgiveness, truly? I have been told that forgiveness is solely for us, not for the people who have wronged us. I have written about forgiveness before, but it has felt slightly hypocritical to do so because I still feel anger about some of the things that have happened to me. 

I have heard the quote, “Hate the sin, not the sinner,” and that quote resonates with me very well. It is not always healthy to hold onto anger, but it is okay to be angry. Anger is a productive emotion, for good or for bad. However, it is my aim to live like Christ would want. Anger and hatred do not only hurt those who have hurt us, but they hurt ourselves. Anger and hatred—bitterness—can change a person. If you are bitter, it is harder to love others.

I have been tempted to retaliate many times in my life, but have talked myself out of it by reasoning that refraining will make me a better person. It’s the same principle that causes parents everywhere to say: “Be the bigger person.” In the Bible, God says, “Vengance is mine; I will repay.” God has control, and He chose to give humanity the gift of free will. As humans, it is not our job to judge others; our job is to love. The rest will come; we just have to have faith.

To live like Christ, we must to be kind to all, even the people who have hurt us. If you help your enemy, you are being noble and truly “the bigger person”. The humility that one displays when being kind to someone who has hurt them is “the coal burning on his head”. Humility is an attribute that everyone must respect. 

The biggest lesson about forgiveness I have encountered comes from Jesus’ crucifixion. It was humans that accused Jesus of being a fraud, humans that betrayed Him, and humans who nailed Him to the cross. And yet, in return, Jesus gave humanity the ultimate gift: eternal peace and a place in God’s kingdom. After all that Jesus endured, He did so much for humanity—put his “enemies” above Himself.

We are merely humans. We’re not perfect. But if we can forgive, that’s a step closer to God. Forgiveness is one of the hardest things to do. It is as much for our enemies as it is for us. 

Objectification of People With Disabilities Is Not Okay

 Whoever is trying to pull you down is already below you. —Ziad Abdelnour

Recently, I have been using a wheelchair to get around school after my femoral osteotomy surgery. It’s been hard in a very different way than when I was walking. I have lost a lot of independence. Though I can propel myself using the wheels, it’s not the same.

I have felt insecure lately, mostly because of being in a wheelchair. There have been times where I stood up and I heard whispers behind me because of the scars on my legs—but using the wheelchair has made me feel inadequate. 

For one thing, I am much shorter than everyone else sitting in my wheelchair. People have to look down to talk to me, which makes me feel less-than. Many people don’t see me coming. But sometimes being invisible to other people isn’t the worst thing.

This week I got a comment I never expected. I was wheeling in the crowded hallway when I heard a boy behind me. “I want to push that wheelchair girl,” he said to his friend. His tone implied he meant something much less innocent than the words that came out of his mouth. I turned around just in time to see the look on his face—and I wish I hadn’t. The look was disgusting. 

He wasn’t seeing me at all—he was seeing someone shorter than him, someone who couldn’t do something that he could. And so he chose to objectify the wheelchair—objectify me.

I am not my wheelchair. I am not “the wheelchair girl”. And I certainly don’t need the implications of a boy I don’t even know. That is such a limited mindset, to just see a girl in a wheelchair.

I know that comments like that happen every day. And it shouldn’t be allowed to happen. My first thought after the boy said that was to turn around and roll right over his feet. All-consuming anger filled me, and I felt the urge to do something. I felt so low, just letting him say that to me without doing anything. I felt like I was powerless, just a girl in a wheelchair, which was what he wanted me to think. But I didn’t roll over him. I kept rolling down the hall. He wasn’t worth it. I was better than that.

I am no better or worse of a person than anyone else because I have CP. People shouldn’t consider me less of a person because of my disability. If they do, well….. There’s no way to change people. Other people are not in my control. Lately, especially, there is a lot I don’t have control over, like my wheelchair, but I will always be in control of my actions. 

Objectification of anyone is never okay, but people with disabilities especially have enough to deal with. If humanity is dark enough to objectify disabilities, then I honestly don’t know what to say. I am very frustrated by this encounter. 

No one is above me just because he or she can walk better than I can. That’s not how it works. A person should be defined by the content of their character. Everyone should get the chance to show that they are more than their circumstances. We all deserve that chance. 

I—and all people with disabilities—deserve to be able to take up space without being objectified for it.

Being In A Wheelchair Should Not Mean I’m Invisible

 

Recently, I have had to use a wheelchair after my femoral osteotomy surgery because I can’t walk very well in public. That has opened my eyes even more to the absolute lack of awareness and accessibility for people with disabilities. I was very reluctant to use a wheelchair because I was sure that using a wheelchair would lead to emotional struggles. I expected that people would be mean or ask a lot of questions. The exact opposite happened. It’s like being in a wheelchair made me invisible to everyone.

On the first day of school, a girl that my sister and I are both acquainted with said hi to my sister and then walked right past me. In my first class, I had to sit in my wheelchair against the wall for ten minutes because all the desks in the front row were full. Two of my teachers have assigned mobile activities and have forgotten that I can’t walk. No one holds the door for me. A paraprofessional was assigned to push my wheelchair and help me get to class, and people just watch us struggle with the door. It is very disappointing. No one watches their surroundings. I have been practically run over several times and my left leg has been jostled, but none of the kids seem to care.

And in my theater class, where I found so much acceptance last year, I sat near the left side because I came through the left entrance. When my classmates came in, invariably most of them would offer me a brief greeting and then go sit on the right side. I sat by myself—not by choice. Everyone in my theater class walked past me. 

I didn’t change as a person. The only thing that changed was my mobility. My cerebral palsy is not contagious. I am the same person I was last year, but with different experiences. I don’t understand why a wheelchair is so hard for other people to understand and deal with, when I am the one who has to tolerate the pain and the overall daily trials. 

I understand that my being in a wheelchair is temporary, but that does not mean that the lack of accessibility and awareness is okay. Not only for me, but for all the other kids who need accommodations. Besides, my mobility may decrease as I get older, like many people with CP, and then I may need to rely on a wheelchair. 

People using wheelchairs shouldn’t have to be ignored or not prioritized. Disabilities are a natural part of life, so they shouldn’t be scary. People with disabilities are people first. My CP is not going to go away if people just don’t acknowledge me. Everyone should overlook their prejudices about wheelchairs and try harder to be accommodating. A disability is not the person’s fault, so we should not be treated as lower-class. 

Trusting My Choice—and My Legs—After My Femoral Osteotomy

 

I had to make a choice this summer. My choice was this: be in pain indefinitely or have orthopedic surgery. You can probably guess which one I chose.

I didn’t consider surgery a particularly fair choice, but one thing I have learned in my fifteen years of life is that life can be both beautiful and unpredictable—and unfair. Life isn’t fair. Spending the summer before sophomore year recovering isn’t fair.

I can acknowledge all of that, but then I have to move on. The surgery was logically my only option. It was the opportunity God gave me, and I felt I had to take it. 

I was put to sleep for three hours and when I woke up, my legs were different.

I was unnerved. I had a rod and screws in my leg and my femur—the biggest, longest bone in the body—was broken, albeit intentionally. For more than fourteen years, my femur caused my leg to turn the wrong way. Now it was like I had a new start. 

As I lay in the hospital bed, my mom pointed out that my feet were turned outward for the first time. I think she almost cried. I might have cried, too, but I was too loopy. The outward rotation of my left foot, specifically, meant that my hips had less pressure, which was one of the goals of the surgery. 

Since the surgery, I have had many ups and downs. I had been home from the hospital for two days when I started having chills and constant spasms. My parents helped me to my bed and I eventually fell asleep. Generally, sleeping after the surgery has been hard. I never found it easy to fall asleep to begin with, but after surgery, the pain and spasms kept me awake. I slept during the day because the medicine was very strong and made me drowsy. The pain would move from my hip, settle in my femur, and travel to my shin. Despite the pain, I had some amazing accomplishments after surgery, too.

The day after my femoral osteotomy, I started using a walker. I noticed that as I walked, my left foot would either straighten or turn outward, not inward like it used to. The lengthening of my abductors helped to drastically widen my stance as I walked. I had walked the same way for almost fifteen years—knees bent, left foot inward, narrow stance. Now I wouldn’t trip myself up because of my rotated femur and lengthened abductors. I thought that was amazing!

However, for the first few weeks of my recovery, my left knee refused to bend. I couldn’t tell that my knee wasn’t bending but found out when I began intensive physical therapy. I also couldn’t determine the direction of my feet—whether they were turned in or out, or straight. The natural way my left foot was for so long was turned inward. Gradually, I guess my body was trained that my left foot’s crookedness was actually straight. My inability to determine the direction of my limbs is neurological. My physical therapists hope this will get better as I continue to relearn how to walk.

The loss of independence that the surgery caused has been really difficult for me, even though it’s temporary. I can’t walk for long periods of time. The surgery and sharp femur pain wiped out my stamina and endurance. My sophomore year of high school starts in three weeks, and I’m not sure if I will be able to go to school without an aide or pull my roller bag by myself.

I don’t trust myself anymore. When I walk, I feel like I’m losing control—going too fast, locking my knees, hyperextending. I’m constantly paranoid that the rod slipped out of place and that my left foot is turning in. It’s exhausting, and I often wonder if I will ever trust my legs. I wish that the muscles in my legs would learn to work together soon.

I never really had control of my left leg before. It often felt like my left leg would cave in on me. And even back then, my right leg had to support most of my weight. My struggles with my left leg are not my body’s fault. But my left leg has never really felt like it’s mine. Now, especially, my leg feels like it belongs to someone else.

When all the bandages came off of my incisions, I remember sitting in the bathtub one night, tracing a few of the scars. I was thinking that I’d had chronic pain in my hip, especially the left, for so long, and now I had a visual representation. I looked at all the scars and felt, honestly, that my legs were so flawed. That had to be why I’d needed so much surgery. I looked at my left leg and thought that it was so ugly, inside and out. In reality, my left leg was doing the best it could, using the muscles that had the least amount of spasticity. My left leg has the help it needed now. 

The pain has been severe and intense since I’ve had surgery. My physical therapist has pushed me to achieve what I can, and I’m so grateful for his help. However, there were some times I had some emotions to let out during PT appointments. During one appointment, he laid me on my stomach and pushed on my quadricep. I nearly cried. I struggle with telling my physical therapist that I’m in pain because I feel like I’m complaining. Throughout my recovery experience, I have had to learn to ask for help. 

I have had to use a wheelchair to go to appointments with my doctors and to physical therapy. It is emotionally draining, even though my use of a wheelchair is temporary. I feel like everyone stares at me. I am too short to see much of anything when I sit in the wheelchair. My legs stiffen and it is very painful to sit in the wheelchair for an extended amount of time. Overall, much of my recovery process has been emotional, in good ways and bad.

I have thought so many times during this surgery that one type of pain was swapped for another. My chronic pain was replaced by a new bone-deep, intense pain. I wasn’t sleeping well. I was struggling to walk. At night, I was exhausted. I knew the surgery had benefits. So that’s what I’ve tried to focus on.

A few weeks after my surgery, I was able to stand up from a chair without using my hands—something I couldn’t do even before the surgery. I was shocked and so, so happy. It was emotional for me. My eyes welled up and I smiled at myself in the mirror. I had never done something like this before. As I did it again, I think that’s when I fully realized that the surgery was worth it. The action was so unnatural and new that I kind of wondered if my legs belonged to a stranger. 

On the stairs, my feet don’t turn in anymore. My feet would dramatically turn inward, which was a major fall risk. My physical therapist told me in the past that my feet would never be straight while climbing stairs. He thought it was impossible. My femoral osteotomy helped me achieve something that was impossible for me.

I use more muscles than I did before. There is a muscle near my shin that has been activated lately. A few days ago I told my mom that my shin was hurting, but that it wasn’t a shin splint. Turns out, I had started to use a muscle that I had never used before called the anterior tibia. I was stunned. It took me fifteen years to start to use one of the muscles in my body. Because I always dragged my left foot, the muscle that lifts the foot from the ground during a gait pattern had never been used. I felt like I had just discovered that more was wrong with me than I ever realized, but then I reflected that the surgery has given me a chance to do things I never could before.

So yes, the pain of a femoral osteotomy is miserable at times. Yes, I can’t really trust my legs yet and have to relearn how to walk. But having surgery has shown me so many small miracles. My legs finally have the help they need. I can do so many things that aren’t impossible anymore.

God’s Bigger Picture Plan Through My Surgery

 

“Trust in the Lord with all your heart and lean not on your understanding; in all your ways acknowledge Him and He shall make straight your paths.”—Proverbs 3:5-6

Over the years, I will admit that I have been frustrated with God. All the times when I have struggled with people being mean based on my disability, feeling imperfect, and these last six years of chronic pain, I have prayed.

My family and I tried almost every method to treat my chronic pain. I went to doctor after doctor, who all offered possible solutions. Some solutions worked partially, but I was still in a severe amount of pain. I began to ask God what I had done wrong.

When my grandfather died in the midst of my pain, I wondered why God decided to take away the one person who I felt understood my pain. Gradually through my femoral osteotomy recovery, I realized that I hadn’t necessarily done anything wrong; God’s timing and mine were probably different. 

It turned out that having surgery was probably the best solution anyway. The femoral osteotomy surgery would rotate my femur so that my left foot would either be straight or turned outward slightly. None of the medication or other possibilities for relief would have corrected the way I walked. Now because I had surgery, I have a chance to be in less pain and to fall down less.

There were so many times when I cried to God, wondering why I had to handle so much pain. I didn’t feel like I was old enough to deal with it. I worried that I disappointed God somehow or was unfaithful to Him. I didn’t know what else to do. 

I was unsure if I was following the path that God intended for me. Was I being a bad advocate for other people with disabilities? Did I deserve this pain? 

I still don’t understand the reason for my chronic pain, but that’s okay. I am only human. I am not God. God knows what is best for each of us, and humans are not supposed to understand His plan. 

Throughout those rather tough years of chronic pain, I hoped that eventually something would help my legs. I didn’t understand why I had to wait so long. I didn’t understand why nothing worked fully to stop my pain.

Now I have so much more appreciation for God’s plan. Those six years of pain made me stronger. And surgery was not just a solution for my pain; the surgery did not cure my CP, but I didn’t want it to. The surgery will allow me to have a better quality of life.

God had a plan that would fully help me. I just didn’t know it yet. 

The surgery turned my left foot so that my hip won’t slowly slip out of socket. My legs don’t touch anymore when I walk, so hopefully I won’t fall. God used the surgery to help me. Sure enough, God had a plan.

If I hadn’t gone through the pain, I never would have relearned how to walk in a way that is better for my body. I have faith in God in a much deeper way now than I did before. Now I know that God has a plan for me, no matter what.

The Lord truly does work in mysterious ways. I don’t have to understand those ways; I just have to have faith.

My Story Through My Scars

 

I don’t remember when I got my first scar. I was a day old and my stomach had to be stitched because my bowel was perforated. There were some complications when I was born. The bowel perforation most likely led to my having cerebral palsy. I grew up with that first scar and never really questioned it. The area was numb sometimes, but I didn’t really know any different. 

I wasn’t really vain, but I was careful not to wear anything that showed my stomach even though the scar wasn’t noticeable. My second scar came on the inside of my arm. I had an implant put in that regulated my hormones, as the CP may have tampered with that area of my brain. However, the implant was exchanged six times, so I grew very familiar with that scar.

Over time, I’ve had eight or nine surgeries, and this most recent surgery was the most major, with the exception of my first one. The femoral osteotomy gave me eight scars—one for each year I’ve had chronic pain with two to spare. Not all of the bandages have come off yet, but when I saw the first scar from the surgery I was taken aback. It was rather large, and knowing that I had been cut open and stitched back together unnerved me. As I looked at the scar, I had the thought that I needed the scars because my legs were so flawed.

I looked at the rest of my scars in frustration and wondered how my body had gone so wrong. But as I have healed, I realized that my scars aren’t about my flaws—my scars are the way that I have gotten better. 

These scars on my legs make me sad because I hate that surgery was the only option to “fix” me. But my scars have made me stronger. 

The scars hurt. I think that they are ugly. But after all this time, and all this pain, the scars will take that pain away. The scars are a symbol of hope. My scars do not show my suffering; my scars show the overcoming of that suffering.

This surgery is a new beginning for me. The scars on my legs show that I was brave enough to take a chance—even though I don’t know where that chance will lead. I will have a better quality of life because of this surgery, and if that means I will have scars, so be it. 

The scars are hard for me to look at and touch. But what they mean is worth so much more than how they look. The scars mean I am not stuck in pain with no other choice. Though my legs are frustrating, I think they are beautiful—just not on the outside. My legs have held me up for fifteen years even though my bone was rotated. And through the pain throughout those years, I have walked. I have lived my life with legs that needed a little help. And through these scars, my legs got the help they needed—and so did I.

My scars are ugly. I’m not going to say that my scars are beautiful. Rather, what my scars represent is beautiful. I had to be cut open and stitched back together. Those stitches left scars. But those scars mean hope. And with hope and faith, I will walk—no matter how my legs look. My legs are better now, inside and out, not despite the scars but even because of them. 

My scars mean that life gave me an obstacle meant to bring me down—and I didn’t let it. 

Hope For A New Beginning With An Angel By My Side

 

For He shall give His angels charge over you, to keep you in all your ways. In their hands they shall bear you up, lest you dash your foot against a stone. —Psalm 91:11-12

I made it through surgery! I have more hope that I may experience much less chronic pain, and that would be amazing. There is one person especially I wish I could share that hope with. I know he’s watching over me as I go through recovery and come closer to hope, but the one person I thought could understand some of what I was going through—and how valuable that this hope, to combat this pain, really is—isn’t here anymore.

My grandfather and I had a few things in common, including chronic pain. Neither of us were happy that we had the condition, but I always thought my grandfather could somewhat understand what going through daily, debilitating pain felt like. 

Our pain was different. My grandfather was obviously quite a bit older than me, so his pain wasn’t really due to a medical condition but some of what comes with aging. My grandfather had very severe back pain that no one should ever have to deal with. About the time my chronic pain began, my grandfather began to have awful, chronic headaches. 

My grandfather was my inspiration. I always knew him to have back pain, but for a long time I was oblivious to his struggle because I was so young. My grandfather was in severe pain, and he had to have a procedure where the nerves in his back were burned. No matter the pain he was in, my grandfather always managed to muster a smile for me and my sister. My grandfather had so much passion and love for life. When my grandfather developed his headaches, it became more obvious to me that he was in pain, and it was harder for him to do activities. My grandfather’s smile, his laugh, and his huge personality despite his pain was my inspiration especially as my pain started.

My grandfather and I were both put on so many medicines—some worked slightly, some didn’t. A nine-year-old with chronic pain is treated conservatively, but my grandfather was put on so many combinations of medications with high dosages. It got to the point where my grandfather was in severe pain every day, no matter the medicines he took. It was hard for him to get out of bed on some days because the pain was so bad, but no matter what my grandfather was always happy to see us.

Both of us expressed that we wished to take the other’s pain away. My grandparents moved from their large house in Mississippi to a rental house in Central and started building a house behind ours. I started eighth grade and both my grandfather and I were still having chronic pain. The two of us didn’t talk about it excessively, but we always asked each other how our pain was that day and said that we wished we could take on the other’s pain.

Nothing happened the way I expected. For some reason, although I was getting older, I thought that my grandfather and I would both find some miracle medicine that would take our aches and pains away. I was naïve, but I expected our medicines to eventually start working completely and then the two of us could move on with our lives. 

It hurt me more to see my grandpa in pain than it did to be in pain myself, so I was grateful that my grandfather’s pain was relieved first. I just selfishly wish it didn’t happen the way it did.

For a few days, my grandfather was ecstatic that he had no headaches. And then he passed out and was taken to the hospital. After two days, the doctors discovered that my grandfather had internal bleeding and he passed away.

I was devastated. The death of my grandfather was so unexpected. We had gotten so close and he was one of the easiest people to talk to in the world. And now he was gone. 

I struggled with his death. I knew he was in pain, but I didn’t understand why God couldn’t find another way to take his pain. I know Heaven is our eternal reward, but selfishly I wanted my grandfather to be here on Earth with me. I was conflicted because I was so glad my grandfather’s pain was finally gone, but I missed him so much and miss him still. 

And I felt that the rest of my chronic pain journey I would have to face without anyone who understood.

Two years after he died, I am still living with chronic pain, and I just had my femoral osteotomy surgery. I know my grandfather was watching over me. He gives me hope and inspiration daily. During my recovery, I have missed my grandfather especially and I wish he was here to talk to. 

He would be so happy that I finally found hope after all this time. He would be proud that I am trying my best to recover and relearn how to walk. My grandfather is my angel. I am grateful he found his peace. I just wish he was here while I am on the journey to finding mine.

Already, I have seen some success with the surgery. On the first day, lying in the bed in the hospital, my left foot was straight for the first time in my entire life. And when I stood up and took my first steps after surgery, holding onto the walker, my left foot was straight when it never had been before. My grandfather and God blessed me with a little miracle.

My grandfather isn’t here anymore, as much as I wish he was. However, he is with me, and I like to think I have some of his spirit, which inspires me to keep going and never give up. My grandfather will always be my inspiration. And my hope is that, eventually, neither of us will be in pain anymore.

A Letter After Freshman Year To My Younger Self

Dear Younger Self,

Hey, it’s me! How are you doing? I know you won’t believe this right now (it seems so far away for you) but I just finished freshman year of high school! Obviously, I knew I would get to that point eventually, but we’ve had to go through a lot to get here.

I remember eighth grade vividly. It’s not that far back for me at all. Academically, eighth grade was great. But we have always struggled with friendships, Younger Self, and in eighth grade those insecurities raged inside of me even more back then. I had like three close friends in eighth grade. I doubted whether those friendships would last, not because of a lack of loyalty but because of my insecurities.

My legs held me back from making friends. For the longest time, I was scared to be vulnerable and admit that I needed help. I wasn’t exactly closed off, but I kept my mouth shut about my differences unless there was no other choice. But that path is really lonely. I’m sure you know that by now. CP does not define us. CP is a part of us, though, and we don’t have to hide it anymore. There are amazing people out there who have accepted me wholeheartedly, legs and all.

I remember the place you are in your life, Younger Self. I was such a different person before freshman year. I knew what I needed, but I was afraid to take up space. I was hurting and would have continued to bottle up that hurt if I had not learned to advocate for myself. It’s hard and it’s scary and it means you have to let people hear your voice. But there will be people who are willing to listen, I promise. 

I did not belong in eighth grade. I joined academic clubs, but I didn’t find myself there. I didn’t find a sense of home. Home exists outside of the house, Younger Self, but you have to put yourself out there. In eighth grade, I was desperate to play a sport so I could have a team bonding experience. But my legs wouldn’t cooperate. I had friends, but I craved a team—a feeling I really didn’t have a name for. 

Well, I’ve found it. No, it’s not a traditional team. My talented theatre class is what I wanted but never expected—it’s my home away from home. My second family. My friends who understand me. My friends in theatre offer me comfort and acceptance. We joke around but they always offer to help me. My legs don’t deter my theatre friends from wanting to spend time with me. I don’t have to hide my differences; they make me unique. I use my voice in theater—both to act and to speak an opinion or thought—and I am heard. Despite the help I need, my friends see me, not just my legs.

I really have come a long way. In eighth grade, I was still extremely cautious and raw from being bullied in sixth grade. Now, I haven’t forgotten those memories, but I have risen above them. In eighth grade, I felt hopeless, like I’d never escape the pain that lived inside my muscles and joints. I know it probably feels hopeless to you right now, Younger Self, but there is hope. I am so close. The form that this hope comes in is scary, and I would be lying if I told you I am not afraid. But hope to eliminate this pain is not something I had before high school, and I have that hope now.

I know you didn’t expect to change. I never expected that freshman year would be so much better for me. I gained confidence. I experienced healthy friendships. I learned how it feels to belong. Most importantly, I learned to trust. I have hope. I have learned that when life gets tough, I don’t give up. I have learned that humanity is so much more beautiful than I ever gave us credit for.

I don’t have to be ashamed of my legs. I have friends who accept me and my cerebral palsy. It’s okay to ask for help, and I never would have known these things if I wouldn’t have given freshman year a chance.

I am so glad that I met so many amazing friends this year who have a seemingly limitless capacity for kindness. I have seen the best in myself during my first year in high school, and I have seen the best in others.

So yes, Younger Self, starting high school can be scary. But freshman year will be one of the best years of your life so far. You will meet a girl who you consider one of your best friends. You will learn so much about your capacity for strength, and the capacity for kindness in other people that you never realized was possible.

Give freshman year a chance. You will grow into your own person and learn to trust and hope.

Good luck in this next chapter of your life. I’m rooting for you!

Love,

Ainsley (now a sophomore)

Walking Toward The Future (Not Quite The Way I Expected)

 

This is it. This is how I walk. This is my walk—the gait pattern that causes attention to be drawn to my legs, the walk that alerts others to my differences, the walk that is why I am called “crippled”. And gosh, I try to own the way I walk. I can’t control it. There is nothing I can do but accept the way I walk, in the same way I hope for others to accept me. 

I’ll be honest—when I see myself walking, reflected in a mirror or door, I don’t recognize myself. That girl walking in the mirror looks like she hurt herself badly. It looks like she’s walking on broken glass. It looks like she’s about to trip at any second, or that her knees are going to smash together and interrupt the stride of the other leg. And yes, that happens. 

But by now, the way I walk is so normal (for lack of a better term) to me that when I see myself walk, I am shocked. I am taken aback at how painful my walking looks. I go through that pain every day, and the constant turning in of my left foot does cause some breakdown of my hip, and I experience that. I just usually forget how my walking looks. And then I remember how different I am.

I have walked the same way for about thirteen years now (I learned to walk when I was two and a half). My gait pattern basically goes like this: due to the spasticity of my hamstrings—especially the left—my left foot turns in. My right foot lifts and turns so I’m walking on the side of my right foot. My right knee bends toward the left leg, so close that my right knee almost touches the top of my left hamstring. My left foot is rotated inward, so it cuts under the right foot and causes me to fall down. 

The way I walk feels more awkward on some days more than others. It looks— well, it looks obvious. The way my walking looks is not as important to me as the long-term effect on my body. Right now, my left hip is not dislocated, but it is very slowly loosening from the socket. The way I walk has caused me to have chronic pain—mostly in my left hip—for six years now.

But the way I walk doesn’t have to be painful.

I am a week and two days away from surgery. Surgery is the logical next step toward helping my chronic pain. In the long-term, hopefully the surgery will improve my mobility. My spasticity does cause some wear-and-tear on my joints and muscles, but the surgery will shift the positions of my bones so that I will walk differently. I hope that the difference in gait pattern will take some pressure off.

The surgery is called a derotational femoral osteotomy. The surgeon will cut into my left hip to access the femur and rotate it because my femur is rotated the wrong way. (Not only do my bones grow, but because I have cerebral palsy, my bones rotate as they grow.) 

The surgeon also plans to lengthen my abductors and hamstrings. The lengthening of the abductors will pull my legs apart so the right leg doesn’t hit the left leg as I walk. The left leg shouldn’t turn inward as much because the abductors wouldn’t be as contracted. Contracture means that the muscle shortens, which should be avoided if my abductors are lengthened. 

Because my left foot will (hopefully) face the right way after surgery, my left hip will be straightened, and the theory is that my chronic hip pain should lessen. I am tired of hurting when I walk. If this surgery grants me relief, I will be grateful. 

I have found myself wondering, Will I still look like I have CP after surgery? To clarify, I don’t dislike looking like I have CP. The reality is, I do have CP, and I have to accept it. Actually, sometimes it’s easier in a way if I look like I have trouble walking. If my disability is slightly more visible, people don’t deny me help. For me, because my cerebral palsy is so mild, I struggle with where I fit in, and people do not always believe that I have a disability. I also wonder if I will be called “crippled” anymore. Maybe people won’t notice that I walk differently after this surgery. If this derotational osteotomy improves my gait, that would be wonderful, but I do worry what will happen if I no longer show any signs of having CP at all. 

Identity has become a bit of a blurred concept lately, and by saying that my intention is not to be political but to demonstrate that I view CP as a part of my identity. CP is a part of me. I know surgery won’t take CP away, but I worry a bit about how my relationship with my legs will change. I don’t really remember a time without chronic pain, and it will be a bit nerve-wracking to delve into the unknown, but that unknown will offer me a much better quality of life. 

Six years ago, I never imagined I’d come so far in my journey with chronic pain. I thought the pain was a growth spurt. How wrong I was. Over my journey, I have learned that I can handle challenges in addition to CP. I learned that even when the circumstances seem hopeless, I don’t give up.

I’ve gone through a lot in these past six years. There have been many joys and triumphs, and I have done it all with chronic pain. As the years went on and the pain continued with no answer, I was convinced I would live the rest of my life this way—in pain, dreading taking a step. But this surgery is my chance. My family and I have explored every alternative the doctors have thrown at us, and surgery is the last option. 

This surgery can give me a chance to do so much. It can improve my life; it can change my life. I just have to be brave enough to go through it.

I won’t be alone, I know that. My family is with me and so is God. This is God’s plan. I trust God, but that doesn’t necessarily mean His plan doesn’t scare me. I don’t know what God’s plan for my life is. I always thought that Gods plan for me was to be an advocate for other people with disabilities, but this surgery has taken my life in a direction I didn’t expect.

A while ago, I posted about reflection and how others see us. My hope is that the way I see myself (body image) can improve after this surgery. Mostly, I am okay with how I look when I walk, but I do have my moments when I struggle with body image. But I have to remember that getting this osteotomy does not mean that I need to be fixed. I am flawed. But God made my legs the way He did for a reason, and the surgery will help me and my legs reach my full potential. 

This surgery scares me. It frustrates me that in order to stop the chronic pain, I have to go through a summer of intense pain and therapy. But if it’s what I have to do, I’ll do it. The rest of my life is worth it. I know I try to advocate for people with CP and I try to have a positive outlook, but that does not mean I’m perfect. I am so hopeful that this surgery will work. But I am scared of the unknowns.

No matter what, I will undergo surgery. I will walk toward a brighter future, regardless of what that looks like for me. I am in God’s hands now. 

The Peter Pan Phenomenon vs. Time vs. Me

 

“It’s supposed to hurt; that’s how you know it means something!” —Molly Aster, Peter and The Starcatcher

The curtain is falling on this school year. I’ve never struggled with an ending this much before. The play my theater class and I performed meant so much to me—it was the most fun I’ve ever had performing a play, but other than that, Peter and The Starcatcher proved a lot to me. Over this year—while rehearsing for Peter and after—I have learned that it’s okay to be vulnerable and accept help from my classmates. I have rediscovered my passion for theater, which was hidden under cliques and drama. I have learned how to be myself with my friends.

I have learned to be myself, not even despite my legs. No, I have stopped hiding my difficulties in theater. I have been accepted wholeheartedly. 

I only have about two weeks of ninth grade left. The seniors—who have become some of my closest friends this year and were some of the first to accept me with no hesitation—have about three days of high school left. And I’m struggling. I really am. 

I don’t know what to do. I don’t want to lose touch with my friends, including the seniors. My theater friends’ acceptance helped me find myself, and by losing touch with them, I might lose part of myself. Being with my friends in theater has given me faith that I don’t have to hide my legs in order to have meaningful relationships. My friendships in theater are so valuable to me, and I honestly don’t know what I will do without my friends this summer. 

My friends in theater are some of my best friends. Because of the seniors’ acceptance of me, I am no longer jaded toward older kids. I don’t have to worry about my theater friends being mean, or resenting me for what I can’t do. None of the seniors, especially—and one of my best friends who I now eat lunch with sometimes—ever hesitate to help me. One boy always makes sure I make it on and off the stairs okay, and everyone always offers me a hand. 

So what does any of this have to do with Peter Pan? Well, Peter Pan is the boy who will never grow up. He was an orphan who wished to “just be a boy for a while”, and so he is. But “a while” turned out to be a very long time. 

Right now, I want time to stop. I want to keep going to theater and seeing my friends and giving them hugs. I don’t want our friendships to change over the summer. Some of my friends are moving on. They are growing up. But I want our friendships to stay the same. 

Because over the summer, I won’t be doing cool activities or moving on or any of that normal high school summer experience. No, this summer I will be going to physical therapy four times a week, relearning how to walk, and I worry that all of my friends will move on without me.

I won’t be able to walk for most of the summer. I will have to use a wheelchair or walker. I will literally be relearning how to walk because my bones will be positioned differently. And I know that it will hopefully lessen my pain, and I don’t want to be stuck in chronic pain for the rest of my life. But I just want to be a girl with stable friendships, a girl whose friends won’t leave her behind. 

I don’t want to be fighting against my legs this summer. I want to hang out with my theater friends, who already accept me the way I am, and be sure that our friendships won’t change. Time really is the enemy for me right now. If I could move on this summer, maybe I would feel differently. But I will be literally and figuratively stuck, and I am desperate to keep my friendships the way they are.

I know that’s not healthy. I know change is good. I know that this surgery coming up will benefit me. I know that I will be okay when the seniors leave even though it will be hard, and even though saying goodbye will hurt.

Because the show Peter and The Starcatcher, this school year, learning how to truly be myself in theater and with my friends—it all means something. It means everything. I am scared. I am scared that my legs will change—even though it will hopefully be a good change—and I won’t recognize myself. I’m scared that my friendships will fade this summer as I try to recover physically. But mentally, I don’t think I could recover from losing my friendships with my theater friends. I am scared. But I don’t have to fear time. I have faith in my friendships. I have faith in God.

But if time stopped, none of it would mean as much. I wouldn’t get to discover a possible future without chronic pain. I wouldn’t be able to understand myself and that it is possible for my friends to accept me and my legs. I have learned so many lessons this year. Maybe another lesson I can learn is not to be so afraid of change.

My friendships will probably change. But that doesn’t have to be bad. My friends will be entering new phases in their lives, but if our friendships are as strong as I think they are, my friendships won’t fade. I think Peter Pan had a point. But there is so much I would miss out on if time stopped, and that is a risk I am not willing to take. Time doesn’t have to be my enemy. I will make it through. My friends and I will make it through, even if I don’t quite know how to move on yet. I have time to figure it out. 

(So I guess this is a thank you to all of my theater friends. You know who you are. Hopefully, you know how valuable your friendships are to me. I have been struggling lately, worrying that my friendships with you all will disappear. I guess whatever is meant to happen will happen, because God has a plan for us all. So, thank you for this year. Thank you for helping me understand that acceptance is possible. Thank you for your help, and I love being friends with you all. Good luck in the next chapter!!)

The Countdown To Unknown

 Today has really been a wake-up call for me. Today marks exactly one month until my surgery (a derotational femoral osteotomy). This surgery may have been the solution in disguise that we’ve been hoping for, I really don’t know. All I can really hold onto is hope. 

As I write this, I am in pain. I have been in chronic pain for six years now. These past six years have been full of amazing triumphs and joys, but through it all—six years of my life—have been taken up by chronic pain. I’m tired. I’m fourteen, almost fifteen. I move like an old lady. I don’t want this pain holding me back anymore.

I’m not naïve; I know this surgery won’t take away my cerebral palsy. I wouldn’t want it to anyway. I just want less painful mobility. I want to move around in a slightly crowded room or walking in the hallway and not to have to worry about falling down. I don’t know if that’s too much to hope for.

If this stabbing, shooting, throbbing, aching pain goes away, that’s my main goal. This is the last stone I see to overturn, and I’m not sure what’s hidden under that stone yet. 

I’m so hopeful for what my surgery might change, but it makes me sad as well. Dealing with pain has become a part of me. Will everything I’ve gone through with this pain not matter anymore if the pain goes away? Will I still look like I have CP? Will people judge me differently?

There is so much I don’t know. I am nervous. Surgery will happen the summer before my sophomore year, and I want to be healed before I go back to school. In 10th grade, I want to be able to do the things that my pain prevented me from doing before. 

Recovery will take all summer, during which I’ll undergo physical therapy three to four times a week. I sound so clinical right now, but I am so nervous. I have been through surgery before, but my rheumatologist told me recently that I feel pain more deeply than most people and that recovery might be more challenging for me. 

I know losing some of the physical strength I have gained over the years is temporary, but it scares me. I like to be as independent as possible. Without the little independence I have, I feel depressed. I don’t want to lose touch with my friends because I’m stuck at home recovering and can’t do much.

I am so hopeful of what I may gain by having surgery, but I can’t help being scared of what I might lose. And it only happens in a month….

I Can Sing More Than One Note 🎤

 At my high school, a student organization hosted a talent show. Not many people really know this about me, but I love to sing. I was in choir in middle school, but the fact that I like to sing probably confuses people because I chose to be in Talented Play Production, not Talented Musical Theatre. I do love the singing part of musicals. Ultimately, though, musicals include complex choreography and the people in musical theatre are cliquey, so I signed up for Talented Play Production.

Anyway, most people at my school (excluding my friends) view me one of two ways: 1) the kid who walks weirdly or 2) the nice, smart, nerdy girl. (Obviously, I prefer Option 2.) No one really sees me as anything besides that with the exception of my friends. I’ve liked to sing ever since I can remember, but I’ve always been shy about it. And until this year, I liked performing, but I was never really passionate about theater. That has changed.

I decided to put myself out there, so I signed up for the talent show. I like challenging myself. Although performing in the talent show would be nerve-wracking, I knew it would also be fun, and I wanted to prove to myself that I could get up onstage and be vulnerable in front of people and still be okay.

This was not the first time I’d performed in a talent show. I used to go to a week-long sleepaway camp for kids with disabilities. The camp had a talent show, and the first year I sang “The Climb” by Miley Cyrus. 

That talent show was less of a showcase of talent—though everyone was talented—and more of a fun camp activity that mostly everyone participated in. In other words, less pressure. At the time, I was nine and it was a new experience for me, so singing in the talent show did make me nervous. My parents were surprised to hear that I sang because I’m generally pretty shy and I have anxiety, but I don’t let my anxiety stop me from doing things I want to do.

My school talent show this year was very different. Only a select few kids auditioned, and the talent show was held in the high school theater with lighting and MCs and tech—much like in my Talented Play Production class. Luckily, because of the class, most of the theater and performance process was not new to me, so I felt more comfortable than I would have otherwise.

Still, this talent show was a much bigger deal. Many people came—so many that the theater I was so used to in class was totally filled—and the talent show was technically a competition, though I really didn’t care about that.

I had chosen to sing the song “Human” by Christina Perri. It probably was not the best pitch for my voice, but the song expressed the message I wanted and so that was all I cared about. Winning the talent show was not the priority for me. My priorities were to prove to myself that I could be vulnerable in front of people, prove to others that I was more than just the nerd and the girl who had CP, and hopefully send a positive message in the process with the song I chose.

In a nutshell, I wanted to prove that I could “sing more than one note” (not necessarily in the literal sense). My “notes” are always pretty straightforward—smart, a high achiever, a nerd, socially awkward, unique, maybe a little weird, slow. I wanted to prove that those things are not all I am. I am more than the way I walk. There is more to me than taking pride in my schoolwork. I wanted people to see me on the inside a little bit. I wear vulnerability on my sleeve with my CP, but I wanted to be vulnerable for a different reason. I wanted to be more than one dimension; I wanted to inspire people with my voice and not necessarily with my story.

For one night, I didn’t want my legs to be the reason people stared at me. I didn’t want people to label me as a nerd when they looked at me. I wanted to use my voice, to be brave, to be vulnerable, to do something that people could appreciate.

I think—and hope—that I proved to myself and to others that I am not “one note”. I am not just the girl who is smart, or the girl who can’t walk right. I can be vulnerable. I can be someone else than who I have made myself to be. I can inspire people without them knowing my background, or my story. I can sing. 

Part II: Going To An Amusement Park With CP

Going to an amusement park and having CP can be challenging at times. There aren’t many attractions that I am incapable of riding. I love to have fun like everyone else, but I can’t last as long at an amusement park because of how much walking there usually is.

In bigger theme parks like Disney World, SeaWorld, and Busch Gardens, there are passes for people with physical and intellectual disabilities so that we don’t have to wait in line. Standing for an extended amount of time can be difficult, and it is. I don’t like taking advantage of the pass because I feel like there are so many people more deserving than me to use it. I do have cerebral palsy, but it is mild and I don’t like drawing attention to myself, so there are some times I may make having CP in an amusement park more difficult than it has to be. 

Sometimes, my family brings a wheelchair so that I don’t have to walk around the park and my energy is conserved. However, I get stared at so much that sometimes I don’t like bringing a wheelchair. I know that might sound petty because people who use wheelchairs on a daily basis don’t have the choice to leave their wheelchairs at home, but I digress. 

Anyway, I didn’t feel like being stared at on this vacation and there wasn’t enough room in the car to bring the wheelchair anyway, so I walked. For the first few hours, I was running on adrenaline. Many times, on fun outings, I am in pain, but I am so looking forward to the outing that I just ignore the pain. This was the case for this amusement park. I was so excited to go on the rides that I forgot to pace myself.

I was having so much fun when I was actually on the rides, but when I got off I had to walk. I didn’t mind because I was so excited, but after a while my legs got so tired that I couldn’t hide it anymore. When I start to get fatigued, my feet drag and catch on the ground. 

I never want to say that I’m tired because I feel like such a party-pooper. And though my physical health should come first, I love having fun so much that I don’t want to take a break and sit down.

It is hard for me to balance what I want to do and what I should do where my legs are concerned. My body doesn’t feel like it is built to handle being a kid sometimes. I want to keep going and keep walking but the reality is, I can’t. I have to sit down. 

I have to learn at some point that my physical health is the priority, and there is still a way to have fun and pace myself at the same time. It is a bit hard for me because I see kids running around and walking for hours on end, their adrenaline ensuring they never tire out. I am a young teenager and my endurance is that of an elderly woman. It is certainly frustrating.

That being said, going to an amusement park with my family is such a fun experience that I would never trade for anything. Though I do get frustrated when my legs give out early, I love having the opportunity of being able to go to a theme park. I am grateful that I am able to ride most attractions and truly do not take the ability for granted. 

Part I: Bittersweet Vacation (But Mostly Sweet)

Over spring break, my family and I took a vacation to Galveston, Texas. I was very happy to go on vacation because I love having fun and spending time with my family. I was also aware that this was my last vacation before my derotational femoral osteotomy, which is a major leg surgery that I hope will lessen my chronic pain. 

This vacation was unexpectedly harder for me. Walking on the beach is tough sometimes because I do not navigate uneven ground very well. We walked a lot and had a lot of fun, but my legs were worn out every day.  

There was a part of me that was sad in a weird way. I was sad because it felt like the end of an era for me. I don’t know how vacations in the future will be different after my surgery. I hate having pain, but I expect it. Recovering from surgery, I will have to relearn how to walk because my bones will be in different positions. Was walking during vacation only going to get harder from here?

I don’t know the answer. I was disappointed that I had to be in pain throughout this vacation. Fear of the unknown is scary, but sometimes being stuck in a continuous cycle is even harder. I knew the pain wasn’t going to go away on this vacation, and that was frustrating.

Most kids don’t have to pace themselves through their vacation because they know they’ll be in pain by the end of the day. I don’t think it’s fair that I have to. But even though it’s unfair, there is nothing I can do about it, so I have to just roll with the punches.

In the end, though, I tried to focus on the present because the future will come later. The beach was beautiful and peaceful, and it was nice to get away from everyday life. I loved spending time with my family, and all that mattered was I got to share a beautiful trip with them before undergoing surgery.

Theater Is…..

In real life, my tongue is tied
In real life, my voice is
Meek
Barely there
Hardly a decibel
Only there for people
Who are willing
To hear it. 

When I enter theater,
I am
Different.
As if a spell was cast
Like I am the female lead
Of my own play,
My own story,
My own life.

In theater, I am not
Helpless
Not anymore.

In theater, my voice is
Strong
Resonates
Like I know that
I Deserve to be 
Heard.

In theater, I can be
Angry
It’s okay
I can yell
I can restrain myself
I can be
Furious
I can be
Quiet
I don’t have to be
Real

But yet it's in the theater
On the stage
Looking out at the people who
Over this year have become
My confidants,
My community,
My friends,
My Family,
that I am real
that I am completely
Myself.

In this space
That has become
My happy place
My source of joy
I can act
I can cry
I can become someone
Different
But I end up being me.

In theater,
I step through the doors
and lives fall apart
And are mended
in the span of an hour
When I’m upset
Feeling that I’m
Broken,
Shattered,
The pieces slipping through my fingers,
I can be emotional
But it’s someone else I'm speaking for

Theater is seemingly simple

Yet so effortlessly complex

Theater is fun,

Smiles,

Laughter,

A place where I can

Relax

Be me.

Theater is not a

Team sport,

And yet I’ve found

My team

We’re all equal players

Our game is life

In theater,

My friends,

My family,

We are a team—

With support,

Encouragement,

Prayers,

Surrounding each other

Building each other up.

While becoming someone else
I find myself
I find a group in which
I belong
I find happiness
I find a family who accepts me
People who see me 
As who I pretend to be

The girl with the
Strong voice
Burning gaze
Emotions in her eyes
The girl who knows 
What she’s doing
Who she wants to be
And yet, that girl is me
In a different universe.

Only a few people
See that universe
Only a few people see
A girl who can act
Without breaking,
A girl who can say
What she wants
Raise her voice
Convey a message 
With a single glance.

This girl can stop
Keeping her words
Inside,
To herself

I can pretend all I want
But I am seen
I am seen so much more
Than I ever have been
Before.

When I speak
I am learning how to
Express myself.
Being quiet can be
Strong,
But using my voice
Has its own kind of strength.

In theater, I don’t

Walk on eggshells

Instead I

Walk across the stage

In theater, I don’t lock eyes

With the floor.

I gaze at my audience, maintain

Eye contact.

In theater, I don’t

Make myself scarce.

I let myself

Take up space

(what a beautiful feeling).

In theater, I don’t

Bite my tongue

I speak, because

In theater

Speech is key.

In theater,
I don’t forget 
My legs.
It’s more like
My legs don’t matter
Anymore.
I move
differently
My left leg hasn’t magically
Changed
My words tumble out faster
Than my legs can move.

In theater, it’s like
I don’t care
My legs will keep up with me
Or not
I have a purpose
Whether or not my legs agree

My emotions propel me
These emotions,
I feel them all 
The time.
I am more of an actress
Elsewhere
Be quiet, I tell myself
Hide your feelings.
It’s how I survive

Theater is not about surviving
Not anymore.
I can thrive
My voice matters,
here.

I can think what I like
Say what I feel
And though some of it is
Pretend,
Not all of it is.

I can’t always say
What needs to be said,
not yet,
Not to who really needs to
Hear it.

Each time,
I drop other people’s words
What they think of me
Their control over my life
And,
Slowly,
I take that control back.

In theater,
Every whisper,
Every murmur,
Every comment or shout or wisecrack
Anything anyone could say
It all matters.

As my voice slips out
I become who I wish
I could be.

Theater is not all
Pretending.
Theater is heart 
and soul
in being someone else,
Even if that someone
is yourself.

As I realize
My voice matters
My voice is heard
I have power,
It was taken,
But my power doesn’t have to be
Gone.

This power is mine to earn
With my words
and my voice
and my trust

Theater gives me a reason,
Another person to be,
For just a while.

And over time,
That person
The girl who is confident when she moves,
The voice that holds power,
quiet or loud,
The girl who believes in herself
Believes she can speak her mind
Believes she has something worth saying,
Will emerge 
Like a butterfly flying from the cocoon.