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….