Words Are Enough

Finding Normalcy with a Disability

 

I’m normal here. My bike is normal here, was one of my first thoughts as I looked around at the Wheels To Succeed bike event. 

Wheels To Succeed is a program sponsored by Our Lady of The Lake and McMains Children’s Development Center that provides kids with developmental disabilities adaptive bikes. Adaptive bikes are very important for the well-bring of kids who can’t ride bikes with two wheels because riding a bicycle is a fundamental part of childhood. Adaptive bicycles cost thousands of dollars because they are so specialized, so the event is partly a fundraiser, and partly a chance for kids with disabilities to ride their bikes with others like them.

The sense of normalcy I experienced at Wheels To Succeed was definitely different for me. Usually, I am not considered normal. I was featured in an article once (actually, it was an article about getting my adaptive bike) and the article began: “It was a normal sunny day….What was not normal was Ainsley or her bike.” 

And the article was right. For so long I’ve resisted the idea that “normal” exists. It shouldn’t exist and it may be a societal construct, but “normal” does exist. It’s just that “normal” differs for people depending on their perspective.

For example, able-bodied people—people who don’t have disabilities or health challenges—probably think that a person with a disability, or a person who uses mobility equipment, etc., isn’t normal. My normal is having pain every day, and that is considered abnormal for most people. My normal is bloodwork and shots and physical therapy and IEP meetings, and diagnoses that don’t quite fit. Sometimes medicine can’t explain me, and for me that’s normal.

My point is that normal does exist in society. I could argue until I’m blue in the face that normal isn’t real, but I would be wasting my time. It is a waste of effort to try to convince people who will never think I’m normal that it doesn’t exist.

However, what is true is that normalcy isn’t automatically a good thing. Being normal isn’t a wonderful personality trait; it’s just an opinion. Although, I think it is human nature for people to crave belonging.

I never really feel like I belong anywhere. I don’t appear to be disabled, but I need help with things that most able-bodied people don’t. I’m right in between two worlds. I’m the intersection in the Venn diagram. When I try to claim a disability identity, I feel like it will never be valid enough. But I can’t make my cerebral palsy disappear, either, and I wouldn’t want to.

Overall, it is easier to fit in with the disability community because nothing is considered wrong or too strange. I feel more comfortable there because I don’t have to defend my disability. I can just be…Ainsley. In other places my CP is surprising—never a good surprise. But I can be myself in the disability community.

Wheels To Succeed was great for me because it improved my self-confidence. People were happy for me when I finished the bike race—without any strings attached. I was able to ride my bike without any judgment, and with other kids like me. My bike was normal at Wheels To Succeed. I was normal.

I struggle to admit this to myself, but sometimes I just want to fit in. My CP is so mild that I don’t really feel seen in the disability community—but that’s kind of the point. I don’t stand out, so I can just be me. I get to claim a disability identity that is rightfully mine. I get to have fun being active on my own ability level.

I got to finish a bike race like a “normal” kid—but I’m not, and that’s what’s beautiful about an event like Wheels To Succeed. 

The Journey to the Finish Line

 A year ago, I couldn’t run. A year ago at this time, I could barely walk. Running was something almost everyone could do as a kid. When I was in elementary school, I could technically run, but I was slower than everyone else. Because of my uneven gait, my attempt at running was more of a clop—but I really tried. Then in fourth grade, my chronic pain started, which made it even harder for me to run. The pain was so intense when running that the desire to run wasn’t enough for me anymore. Though I wanted to fit in, running wasn’t more important to me than minimizing my pain. In June of last year, I underwent major surgery, my femoral derotational osteotomy. After surgery, I completely relearned how to walk. The process was very difficult and took months. My gait was different and even more intensely painful at first. However, I eventually got the hang of walking again…and decided I wanted to relearn how to run.

For a long time, my PT put me on the treadmill. On the treadmill, my gait pattern was steady and I was safer. Slowly, we increased my speed until I was running. Running isn’t exactly easy for me, but it is much less painful than it used to be. My legs have a smoother flow. My running isn’t as choppy as it was when I was younger.

Now that I could run, I remembered a conversation I’d had with my aunt many years ago. My aunt enjoyed running and had invited me to run with her in a race. At the time, I hadn’t thought much about it because running hurt too much. But now, my surgery had given me back an opportunity. 

I asked my aunt if she would still be interested in me running a race with her, and she said yes. We found a 100-meter kids’ race that benefited a local therapy center called Launch. Helping a therapy center was a cause close to my heart because I went to a similar center for occupational therapy when I was little. Launch helps kids with developmental disabilities—including autism, Down syndrome, and cerebral palsy—reach their goals through occupational, physical, and speech therapy. (If you would like to help the cause, you can donate here.) I hope to be an advocate for people with disabilities, and running for that cause is another way for me to advocate. I wanted to do a 100-meter race because I thought it was a good start. I didn’t have much running experience, and a small distance would help me build confidence.

My physical therapist and I started training to run the race. Soon, I ran over 100 meters in the therapy clinic, in the parking lot, and on the soccer field at my former middle school. I worried about falling down, so I wore knee pads. That might’ve looked a bit odd, but I didn’t care. Especially for my first race, I wanted to be safe. 

My aunt was super encouraging and she was proud of me for trying something new. I was happy to spend time with her doing something that I knew she liked to do.

On the morning of the race, I was extremely nervous. I knew I was capable of running the distance, but I doubted myself. I imagined falling down or having to stop in the middle of the race. My goal was to cross the finish line, but honestly I wanted to run the entire distance.

My entire family was very supportive of me. Before the race, I knew they believed that I was a winner just because of all my hard work and all that I had overcome.

My aunt and my dad stood at the starting line, cheering me on. “You can do this,” my aunt assured me, and I tried to tell myself the same thing. The air horn sounded, and I ran. I wasn’t very fast. My run wasn’t elegant or any of that. But I ran the entire distance, and I wasn’t the last one to finish.

With my race—even though it wasn’t the longest distance or the fastest time—I achieved a goal that I once thought would be impossible. I learned not to doubt myself or my capabilities. Although I have limits due to my cerebral palsy, those limits do not have to stop me. I can sometimes push past them. I know this might sound corny, but with my family’s encouragement and support, and a lot of hard work—over a year’s worth, in my case—I can do anything I set my mind to. And I wanted to cross that finish line. The finish line was symbolic for me because it represented my achievement of my goal. I had finally done what I’d wanted to do, and had gone through the work to get there. In the end, it’s not the destination that matters, but the journey it takes to get there. My journey to run the race was a lot more meaningful than the finish line, and I learned a lot about myself in the process.

My First Surgery Anniversary

 1 year ago today, I went to the hospital for my first orthopedic-related surgery. On June 1, 2023, I had a femoral osteotomy with bilateral hamstring and abductor lengthenings. The first few days out of surgery were a blur. All I felt like doing was sleeping.

Recovery was one of the hardest things I’ve ever gone through. There were definitely times when I wondered if the surgery was worth it. 

I didn’t sleep well for the first several weeks; the urge to sleep struck at random times throughout the day. The pain was excruciating. Relearning how to walk in the summer heat was torture. I wasn’t able to stop using the walker when I wanted to, which was a really tough disappointment. 

The adjustment to my legs after surgery was challenging. My feet didn’t turn in anymore, but I was no longer sure where they were in space. My gait was slow and laboring. My legs and feet spread widely apart when I walked. Gradually, I learned to accept that my legs would change and that recovery was a non-linear process.

I worked my butt off to make progress. I relearned how to bathe by myself. I went to physical therapy at least three times a week for the entirety of summer. In physical therapy, I was taught how to walk without the walker. With my physical therapist’s help, I started walking on the treadmill again. By the end of the summer, I could do several things that I was unable to do before. I could stand up without using my hands. My upper-body strength was better than it had ever been.

Despite all the progress I had made, I started my sophomore year in a wheelchair. It was the best option for my safety. Using a wheelchair isolated me from some of my friends. I struggled with my self-worth at first because I felt inferior. It was very difficult, but I gained so much perspective that I wouldn’t have had otherwise. 

Throughout the school year, I continued going to PT (once a week). My physical therapist taught me how to run. I hadn’t ran in so long; it felt unexpectedly good. He even started me on high-intensity treadmill training.

For the first semester of sophomore year, my mind was focused more on recovery than school. It was very painful to sit upright in a chair for so long. So many aspects of school were harder because of my lack of ability to walk. Luckily, by Thanksgiving, I was cleared to walk to my classes independently.

I see differences in my legs almost every week. Sometimes my calves are tight; sometimes my feet are tight. Sometimes the right leg is tighter; sometimes the left leg is tighter. Having this surgery has really taught me to be flexible. I am so grateful that my hamstrings really aren’t an issue for me anymore. The surgery changed a lot of things—some good, some not so good.

It has taken up to a year for me to see all the effects from surgery. Some aren’t great, but the vast majority of outcomes are amazing. The outcome of the surgery has been well worth all of the pain and struggle.

Here are a few things I have accomplished after my surgery: 

1. I relearned how to walk!! This was a pretty huge one. Not everyone learns how to walk twice in their lifetime.

2. I relearned how to run! I can now run at 3.4 miles per hour on the treadmill without much pain. I think that’s pretty awesome.

3. I went horseback riding on a full-sized horse. (I have only ridden a pony before surgery.) I even got the horse to turn around when he misbehaved! 

4. I went scuba diving! I had a little bit of trouble with the fins at first because I couldn’t feel my feet very well, but it all worked out. My legs were straight up in the air most of the time (never could have happened before surgery!) but I really enjoyed the experience.

5. I learned how to drive a golf cart! I couldn’t do drivers’ ed this past summer because of the surgery. To get some practice, my dad took me to the golf course and taught me how to drive a golf cart.

Life doesn’t always work out how we expect. I decided to go through with this surgery because I hoped it would stop my chronic hip pain. That didn’t happen, which was disappointing, but my surgery changed so much positively for me as well. I would 100% go through with the surgery again if I had to because it was worth it. 

My leg was literally snapped into two pieces a year ago. 

Since then, I have become a stronger person. I know that sounds corny, but it’s true. You really do learn through adversity. To the person I was a year ago, I would tell her that this is one of the best decisions I have ever made. It was one of the hardest challenges I have faced, but my legs are so much better now. I can hardly believe it’s been a year!

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.