Hope

 I think that hope is the most important thing someone can have when dealing with a chronic diagnosis or illness.

I didn’t have any hope a few months ago. While I love my life, I had resigned myself to living in severe chronic pain with absolutely no help on the horizon. All of my specialists pointed to a different problem—muscular, mechanical (joint), rheumatologic. And however nicely they put it, the message was the same: “Sorry, we don’t know how to help you.”

My age combined with all the variables of my medical history does make for a tough case. None of my doctors could figure out the cause of my pain, which meant that they could not eliminate my symptoms (not for a lack of trying). With every treatment that failed, a little bit more of my hope died. It may sound dramatic, but I was convinced that I would always be stuck in a Rubik’s Cube of a body that no one knew how to solve.

Fast-forward about three months ago, my pain escalated. Now it is hard to go to sleep at night. The throbbing of my left hip keeps me awake. A deeply aching pain follows me around throughout the day. Finally I broke down and told my parents I wanted to use the last weapon in our arsenal. I wanted to go to a pain management specialist.

I had been putting it off because I felt that if the pain management specialist didn’t have any answers, any last shred of hope I could cling to would be gone. But I was tired of suffering. Despite how final going to a pain management specialist felt, it seemed to be the only option left.

One of my fears going to a doctor who treats my chronic pain is that they won’t believe me. I am younger than most chronic pain patients and have had chronic pain for a very long time, and because of that, some doctors won’t treat me.

The pain management specialist we found is a very nice and knowledgeable doctor. She believed that I was in pain, which is so validating. In less than 15 minutes, she had a possible diagnosis for me. Considering that I have been seeing specialists for years to treat my chronic pain and they have since ran out of ideas, I was impressed (and a little skeptical). 

The diagnosis the pain management specialist believes I have is called piriformis syndrome. This syndrome involves the piriformis muscle, a small muscle of the hip and lower back. When this muscle is spastic or tight, it can make movements with the hip quite painful.

In that moment, I was filled with both disbelief and euphoria. I couldn’t believe that a doctor I had known for 15 minutes actually had come up with a diagnosis and a corresponding plan to treat it. I was also almost euphoric because I had gone into the appointment fully expecting to be told that I couldn’t be helped. For so long, I believed that my body was hopeless. With two little words, my doctor sparked the hope inside of me that had been missing. 

Even if my upcoming procedure for piriformis syndrome doesn’t work, I am still grateful for my pain management specialist. I thought that going to a pain management doctor would be the end of the road, but instead I have a possible new path. I realized that my body may be different than others, but that doesn’t mean that hope can’t exist.

Because that’s the thing about hope. Hope shines in the dark places. Hope is the crack of light in a door that you thought would always be closed. Hope is the motivator that encourages you to never give up. And even in the most difficult circumstances, we can still find hope—or in some cases, like mine, hope finds us. 

All this time, I thought I knew what I needed. I thought I needed a diagnosis and a quick fix for my chronic pain so that I could get on with my life. There are quick fixes for some things, but my body has never been and will never be one of those things. And that’s okay. I don’t need my body to be fixed. What I needed was the hope that there are other possibilities. Having that hope ultimately reassures me that I am not irreparably broken, even if I feel like I am sometimes.

I don’t know what the future holds. I don’t know if I will still have chronic pain years from now. I do know that I will always try to hope for the best, and that I will never, ever give up on myself. There will always be an outcome left to hope for, no matter how long it takes.

Where is God?

 This post delves into religious themes. If that makes you uncomfortable, feel free to skip this post.

To better understand the following, I have had chronic pain for eight years. I was nine years old when it began and as of this writing, I have not found a diagnosis.

Where is God? On my bad pain days, this question features prominently in my mind. How could He watch and let this happen to me? is another. I don’t like playing the victim, and that’s not what I intend to do. But I think it’s healthy to acknowledge that when I’m in a more severe amount of pain than usual, I do everything everyone tells Christians not to do—I question God. I bargain. If I get all As, please make my pain better. If I pray a little more, maybe the pain wouldn’t be as bad. I worry. Maybe I disappointed God, and this is the consequence. I grow bitter. Why me? Because no one expects to wake up one day with pain that never goes away, and I did.

Growing up, I believed—and I still do—in a loving God that gives grace and is merciful. As a nine-year-old (and sometimes even now), this pain doesn’t feel like mercy. How could a merciful God do this? This felt like a punishment.

Eventually, as my pain continued and had no signs of going away, I wondered where God was. Surely, He wasn’t in the doctor’s office as my first rheumatologist told nine-year-old me that I had fibromyalgia and sent me home crying. Surely, God wasn’t there for my many blood draws when the phlebotomists couldn’t find a vein. Surely, He wasn’t with me as I struggled to explain to my friends that not only did my legs not move like theirs did, but I now hurt all the time. How could God have been there as the many medications supposed to relieve my symptoms failed? Where was God as my body, ridden with aches and pains, stopped feeling like mine and turned into someone else’s entirely?

But God was there. I know He was. God was there to whisper strength into my ear when I wanted to give up. God was the crack of light peeking through that told me to hold onto my hope. As I slowly realized my pain was there to stay, God was holding my hand, telling me that He wasn’t ever going to give up on me. 

Having said that, there are days where if anyone tells me that God has a reason for my being in pain, I will want to scream at them. On my bad days, being told that God’s plan is for me to have chronic pain will make me seethe at the injustice I feel. 

I wanted more for my life than hurting all the time. When my chronic pain began, I thought it was the end of having a productive, fulfilling—and, most importantly, happy—life. But human plans can change. Ultimately, I firmly believe that God has a plan for us all, and having chronic pain just happens to be part of His plan for me.

When I was younger, I wanted to be a physical therapist (PT) to return the kindness that had been extended to me. As my pain changed and worsened over the years, I realized that I wouldn’t have the strength or stamina I needed to help patients as much as I felt they deserved. (My cerebral palsy limits the amount of strength I have anyway, but my chronic pain has sapped any ability I would have had to stand for a long time.) At first I was disappointed. I was confused. How is a physical therapist with chronic pain supposed to work? I wanted to ask God. Don’t you want me to use my cerebral palsy to help people? If not this, then how? But if God had a plan for me, who was I to shout at Him and tell Him “no”? 

Granted, I’ve had my days when I’ve been tired, angry, and just plain sad.

 “No, God, I can’t do this.”

“God, I don’t want this pain anymore.”

“God, why did you choose me? Please, please give this to someone else.”

“I’m not worthy. I’m not good. I’ve cried to You and begged and pleaded. Please give me a different plan.”

But for whatever reason, God’s plan for me right now involves my having pain. There are times where I worry God isn’t there, but there are so many more times when I know that He is—my pastor giving a sermon on pain and discomfort. My PT telling me that it was okay to be upset. Waking up after surgery to see my feet turned completely outward. My friend pushing me up a hill in a wheelchair after my surgery when I couldn’t make it on my own. Inching along the wall of the hallway at school as I relearned how to walk, my friends supporting me. An amazing physical therapist who was recommended at the right time and who I’ve worked with for 16+ years. 

All of these examples and more tell me that God is here, as difficult as my challenges seem sometimes. Even though my faith shakes occasionally, I can trust in God’s plan and know that He believes in me as much as I believe in Him. As much as I struggle with my path in life and wondering why I have to suffer, I know that I will never walk my path alone. 

There Is Purpose In My Pain

 

September is Pain Awareness Month. I have been struggling in my relationship with my chronic pain lately, so I wrote this article as an outlet for my thoughts.

 “You’re too young to have chronic pain.”

This was one of the comments I’ve heard recently. When it first registered, I felt a flash of irritation, but honestly, I’ve thought about the comment ever since.

The lady who told me this, in a way, is right. I’m too young to have to deal with chronic pain. Most people deal with persistent aches and pains when they’re older, when they’ve lived a full life. Instead, I’ve had to grow up with the pain, learn to live with it. I’ve lost two of my grandparents while in pain instead of becoming one, like what’s supposed to happen in the cycle of life, and I’ll probably go to college while in pain. 

I try not to be bitter, but it’s hard. Going through adolescence causes a lot of people to dislike their bodies. Going through adolescence with chronic pain made me hate mine. 

Recently, my chronic pain has gotten progressively worse. The increased pain has led to depression on my part because I feel hopeless. I love my life, but being in pain indefinitely is a difficult reality to face sometimes. It’s even more difficult not to loathe my body when I feel it has let me down so drastically.

Having cerebral palsy limits my ability to do many physical activities. What physical things I can do—like walking and climbing stairs—are made ten times harder because of my chronic pain. At times I feel that chronic pain has taken away the rest of my physical ability, but I won’t let it. I will fight my pain, but all the fighting makes me despise myself more.

When aspects of my life are untethered—being in a severe amount of pain, being depressed, struggling to love my body—I cling to my faith. I believe there must be a reason for everything. Thinking this way helps me get unstuck and allows me to find a purpose.

As I’ve grappled between despising and trying to love myself and my body, I’ve thought about what the reason could be for my pain and suffering. Not the cause, but the reason. 

Laying in bed at night, gritting my teeth against the throbbing and aching in my hips, it takes at least two hours from the time I go to bed until I can actually sleep, so I use the time to think.

What I’ve come up with is this:

My pain gives me purpose. My chosen career is to be a rehabilitation counselor so I can help other people with disabilities improve their mental health. I do already have cerebral palsy, but my chronic pain gives me a supplemental experience to relate to my future clients.

More important than that, though, my chronic pain will teach me to love myself unconditionally. I struggle with self-love, but I will be the first to say that it is very important. I am working on learning to love myself in therapy right now, because if I don’t learn that skill, I will be miserable living my life in a body I can’t stand. I need to change how I think about myself and my body. I love others unconditionally, so I might as well give myself the same grace.

My chronic pain will make that goal of self-love more thorough. When people learn to love themselves, that love often stops at their bodies. My chronic pain affects every aspect of my mind and body. The way my body feels at any given time impacts how I think about myself, so in other words, to change one will change the other. 

Because I have chronic pain, to love my body unconditionally means to love it no matter what it can do. My pain changes on a day-to-day basis, so my expectations of myself need to change, too. If I can walk a long distance one day and then I’m in severe pain the next day, I need to learn to love myself anyway. After all, how can I help other disabled people with self-love if I can’t love myself?

So on my bad days, on the days where every step is an internal battle, on the days where I wonder if my pain will ever get better, I remind myself that pain has a purpose. I tell myself that although my pain causes suffering, if it lets me help others, it is all worth it. And if I can endure pain throughout my life and learn to love myself at the end of this, it is honestly the best sign of a life well-lived.

How I’m Finding Pride In My Cerebral Palsy During Disability Pride Month

July is Disability Pride Month. People with disabilities are the largest minority group in society and yet most people have never heard of Disability Pride Month—or why the concept is needed. I want to take time to explore the concept of disability pride and explain what it means to me. I hope to promote understanding and empathy.

Ever since I found out the name of my diagnosis and that I wasn’t alone—that I had a community—I wanted to be an advocate for others with disabilities. Advocacy was a purpose I felt called to. Speaking up for people who don’t always have a voice in society, people I could relate to, is a cause I want to devote my life to. But it’s a little more complicated than that for me.

As someone who wants to advocate for the disability community, I think it’s very important to be honest. And honestly, taking pride in my disability is sometimes hard for me. I’m not ashamed of my cerebral palsy (or my other conditions, anxiety and sensory processing disorder) but I’ve never been very open about it either. Part of the reason why is because I’ve never felt valid. Because my CP is mild, I worry that I’m not qualified to call myself disabled, ask for help, or many other aspects of the disability experience. As I’ve gotten older and met other people with disabilities, I realized that no one in the disability community would look down on me or my experiences. 

Taking pride in my CP is also a little challenging on my bad days. There are some days where I don’t love my cerebral palsy or the extra obstacles it provides. 

However, where the pride comes in is in the recognition that disabilities are beautiful and diverse. I’m proud to be disabled because of the opportunities my cerebral palsy provides me. For example, I know so many amazing people—both able-bodied and disabled—because I have cerebral palsy. I am able to be a part of a brave community of people who are empowering and validating. I’m proud to be disabled because it has made me who I am. 

My CP has taught me to be resilient through all I’ve gone through. Without having cerebral palsy, I wouldn’t know how capable I really am. My having cerebral palsy has taught me to be empathetic and kind because you never know what battles another person is fighting. I’m proud that my cerebral palsy is a part of me because it has truly made me better. I think this sentiment is echoed throughout the disability community. My friend elaborated on her strengths due to her disability: “I’ve learned how to bend without breaking, how to notice the things others overlook, and how to carry a strength that doesn’t always need to be loud to be real. My disability has taught me to be creative, adaptable, and endlessly resilient.” I think it’s important to remember that not everything about a disability is negative. In fact, I’d argue that the vast majority of disability leads to positive outcomes. Part of disability pride is celebrating the ways our disabilities shape us, and that is beautiful. 

As one of my friends pointed out to me, an important part of disability pride is uniqueness. Every person is unique and every disability is unique. Just as I am proud to be myself, I’m proud to be different from the mold. My CP is mild, yes, but being disabled means that no one walks the way I do. I have rods and screws in my hip and femur, so no one will be able to replicate my gait pattern. At camp, the girls in my cabin said that they could tell I have CP from the way I walk. Cerebral palsy dictates how I walk, and how I walk is unapologetically myself. The way I took that comment was the way I walk shows a connection. The way I walk connects me to people who share my diagnosis. That’s a really special thing. Disability pride leads to connection. 

Because I have CP, I move through the world differently than anyone else. I see the world differently than anyone else. My disability allows me to see with compassion and find opportunities for equality. Instead of resenting our differences, it’s really important to take pride in them. My friend told me, “Disability Pride…[is about] realizing that my differences don’t just make me stand out, they shape me in powerful and beautiful ways. I don’t always do things the way everyone else does, and I’ve grown to love that.” Our disabilities don’t define us, but Disability Pride Month allows me to acknowledge that my disability is a huge part of who I am. At its core, I believe this is what Disability Pride is all about. 

To me, disability pride means being proud of being a group of people that fights for equality, no matter what. I’m proud to know that someone’s abilities don’t determine their worth. I’m proud of all I’ve gone through. I’m proud of all the barriers myself and others have broken. 

Another way to interpret disability pride is dignity and self-respect. Having a disability does not diminish my and others’ need for respect from others, and more importantly, the need to respect ourselves. Internalized ableism and the values of society can make it harder for me to believe that my disability does not lessen my worth. For me, respecting others is something I love—but respecting myself is not always easy. So in honor of Disability Pride, I’ll work on respecting myself and my cerebral palsy. I won’t belittle or invalidate my own experience with CP.

In addition to self-respect, eliminating ableism is a big goal of the Disability Pride movement. I think not being ableist is an extension of respect, and all people deserve respect. Disabled people do not need ableism. Disabled people need allies and the acknowledgment that disabilities are a natural part of life. As much as I may not always like my cerebral palsy, it is nothing to be ashamed of. If people were to embrace disabilities instead of shun them, I think my acceptance of my identity as someone who is disabled would be easier. 

Because disabilities are a natural part of life, accessibility should also be a natural part of life. Accessibility is a need, not just a wish or a want. Part of being proud to have a disability is knowing what you need and that it is okay to need it. It’s okay to need accessibility. Accessibility is a right, not a privilege, and something everyone should strive for during Disability Pride Month and every day. 

I may struggle sometimes with my own internalized ableism and trying to advocate, but I am proud to have CP. I love being a part of a community that prioritizes equality and validation. I wouldn’t trade my experiences with disability for the world. During Disability Pride Month, I am proud to be who I am and to live life with cerebral palsy. To anyone reading this who is disabled, I am proud of you this month and every month just for being you. Happy Disability Pride Month, and I hope everyone understands why we need it. 

I’m a Person First, Not An Inspiration

 Inspiration. It’s a word that is used a lot nowadays, but what exactly does it mean to be one? For many people with disabilities, being an inspiration is a mixed bag. It can be a positive feeling to be an inspiration to someone, but also demeaning when your worth is dependent on being an inspiration. So many times I’ve struggled with guilt over my feelings of sadness, anger, and insecurity. Why? Because those feelings aren’t inspiring. In addition to my worrying about being a burden, because I’m disabled, I feel like I should at least be inspirational. I worry that if I’m not an inspirational disabled person, my worth is less. I know that’s not true, but it is a thought I’ve had. 

There’s a term in the disability community, “inspiration porn”, that refers to the belief that disabled people exist mainly to motivate and inspire able-bodied people. Most of the time, people with disabilities are just living our lives. We’re not heroes for doing so. We shouldn’t be the basis of grace and everything good and holy. People with disabilities are just people—not heroes, not idols, just people.

That’s not to say I always mind being considered inspirational, because I don’t. Many times I’m fulfilled by the thought that I might give people some perspective or strength to keep going in their own battles. In fact, that’s a big reason behind my writing this blog. I want people to know that it is always possible to keep going, no matter what. So there are circumstances where I like being an inspiration, and then some situations where I just want to be myself.

For example, in class at school I just want to be known for being a good student—not a student with cerebral palsy, not an inspiration. I don’t want those aspects of my identity to matter when I’m trying to learn. I know it’s not that simple, but it’s the way I wish things were. Anyway, I was reading a book in my Anatomy class one afternoon when my teacher said, “Ainsley, I heard you read a million words this school year.”

(My school has an Accelerated Reading program where students are recognized for reading one million words over the course of the school year.)

“Yes ma’am,” I told her, smiling because I thought she was about to congratulate me. Instead, what she said next made me falter a little.

“That’s just…so inspiring, you know?” she gushed. 

I smiled and thanked her politely at what I knew was supposed to be a compliment, but it didn’t feel like one. To be clear, I like being recognized for my achievements. But as The Mighty member Kati Shelton said so well, I want my achievements to be recognized for what they are—not for what they are in spite of my disability.

To be honest, reading comes easily to me—in a world where not many things do. While other children were walking and running and playing outside, I was reading. I inhaled words like they were air. Reading is not something that my cerebral palsy makes challenging. And I know she knew that. I maintained an A in her class all year long. I read the material she assigned to our class and comprehended it. I don’t say that to brag but to convey my frustration with my reading a million words being considered inspiring. Something that is easy is not inspiring—even though I have cerebral palsy. My waking up in the morning is not inspiring. My speaking up in class is not inspiring. My everyday life is not inspiring just because I have a disability.

I don’t want all of my achievements to be considered inspiring because it diminishes my harder ones. Things like learning to ride a horse, graduating from occupational therapy, relearning how to walk and run… I’m fine if people consider those accomplishments inspirational because they were hard. It took so much effort to do those very physical things because I have cerebral palsy. That’s what I think an inspiration is or does: someone keeps pushing through even when things are hard. 

I’m not necessarily an inspiration just because I’m me. If people want to say I’m an inspirational person because I’ve achieved things that are difficult for me, that’s fine. I’ll accept that. I won’t accept people lowering their expectations of what I’m capable of doing. If I do something that’s easy, there’s nothing there to overcome. An inspirational person is one who overcomes their obstacles. And for me, good motivation is the thought that I might be helping people see what’s possible. 

I like being considered an inspiration sometimes. But I’m not just someone who could be considered inspirational; I’m a person first. I’m myself first.

Please Be Tolerant: It Makes A World of Difference

I just got back from vacation in Tennessee, and it was an amazing trip! My family and I went to Dollywood and the Smoky Mountains. I love traveling and getting to see new sights. However, sometimes vacations can be challenging because it means being exposed to new people, some of whom can be rude and insensitive at times. Of course, that can be the case anywhere, but on my recent vacation I had an interaction that inspired me to write this post.

Do you know what one of the greatest gifts when going out in public with a disability is? Tolerance. I’m sure almost anyone who is disabled will back me up on this. Everyone who has a disability will have different struggles in public depending on the type and severity of their condition, but I’m not exempt from people’s insensitivity just because my cerebral palsy is mild.

I’ve learned just how important tolerance is on the part of other people through my experiences over the years. One example is the stares I would receive when going to an amusement park. When I was younger, I used a stroller in the amusement park so I didn’t get tired as quickly. Because nothing appeared visibly “wrong” with me, many people stared as I was wheeled past. So many people would stare that I felt like a freak show. That just goes to show that many people have an intolerance to anything or anyone who is different. 

The frustration and almost fascination people had with me and my disability worsened because I—like many others with physical challenges—was able to go to the front of the line for rides so I wouldn’t have to stand in line for so long. So many adults stared and glared at me and my family that I eventually decided it wasn’t worth it to skip the line.

Which brings me to my point—tolerance from the public is a very valuable thing. When I was in Tennessee, my family and I decided to hike to Cataract Falls, which is a waterfall near the Smoky Mountains. The hike wasn’t long or strenuous; it probably wasn’t even a mile. That sounded like a perfect fit for me, so off we went. 

There was a lot of tree roots on the ground and uneven terrain as we walked, so I walked very slowly and carefully so as not to trip. I had also twisted my knee before we went on vacation, so overall I was moving a lot slower than usual. My dad was holding my hand to stabilize me, and because there were people behind us, we moved aside so they could pass.

As the people directly behind us passed, my dad and I stood in front of a bridge waiting to walk forward. Unfortunately, there were also people who wanted to get on the bridge and just weren’t patient enough to wait.

“Excuse me,” one guy said from behind us. At this point my dad and I were sandwiched between groups of people and had nowhere to go.

“Can you please wait just a second?” my dad asked because again, we couldn’t move forward.

“If you would just move over we can still pass you,” the guy muttered.

“What the **** is taking so long?” I heard from behind me. “This is ****ing crazy, man.”

My face burned with shame. In that moment, all I wanted was to magically be like everyone else—fast enough to keep perfect strangers from cursing at me in public to go faster. 

As I got a little distance from the situation, I realized how miserable someone would have to be to curse at a teenager holding hands with her dad on a peaceful hike, regardless of whether my CP is visible or not. It’s rude to curse at anyone in public; let alone someone who is obviously somewhat struggling. The whole thing was so ridiculous I would have laughed if I wasn’t so shocked.

As I told my friend the other day, the fact that some people act this way means there is a need to educate. I’ve wondered what I could have done differently to prevent the escalation and my answer is: I don’t know that I could have done anything. I could have worn my knee brace, but when people see that I can walk they still aren’t very tolerant. And to be honest, I shouldn’t have to “prove” that I have cerebral palsy just to earn people’s tolerance. I don’t think consideration is too much to ask for. 

I have a right to enjoy my vacation just like anyone else. If I walk more slowly than someone would like, they can take the opportunity to slow down and enjoy nature a little bit more. It won’t—or at least it shouldn’t—ruin people’s day to go just a little bit slower or to wait for just a second. 

I wish people understood that it’s not easy for me to walk on uneven ground. I wish people thought about that I’m a person, too, and doing things in a way that is not accessible is hard. I wish they saw the bigger picture and that while they may have to tolerate waiting for a few extra seconds, I have to tolerate pain and insensitivity on a daily basis. 

So please, if you encounter someone with a disability in public, be tolerant. Know that your life will not end if you have to wait a little bit longer. Don’t start cursing in frustration; I promise we’re probably more frustrated about moving slowly than you are. Thank you for your consideration.

Finding Friends, Independence, and Myself at Camp

This past week I went to Camp Dream Street, which is a four-to-five day (depending on age) sleepaway camp for kids with physical disabilities. Camp has always been fun before, but this is the first year that I felt independent—and just like I was at home away from home. So many places in society are not adapted for disabled people. Instead, disabled people are made to adapt to the world. That can make independence harder than it has to be. I have always doubted that I am capable of being physically independent, but I proved myself wrong this week. I also made so many friends who I can relate to and learn from. Usually I don’t have the confidence to approach people, but this week I changed as a person. Going to camp absolutely helped me do that.

Some of what I love about Camp Dream Street is that it levels the playing field. The vast majority of camp is fully accessible (except for one notable curb) and counselors are assigned to help campers with the tasks that they may be unable to complete themselves. My counselors were absolutely amazing people who treated me like a friend instead of someone they needed to babysit. So many people treat those who are disabled like they are inferior, but my counselors treated me—and my cabinmates—like we are human. Most of all, though, I got to have fun. Cerebral palsy wasn’t a limitation at camp. I don’t have to do things in spite of my CP at camp; I accomplish things with CP. We went swimming, canoeing, wrote a newspaper, tie-dyed shirts, drove a van, and so much more, and cerebral palsy was not a limiting factor. That’s very rare.

One of the most thought-provoking experiences I had was when my fellow campers and I in the high school age program were asked to speak on a panel advising counselors how to treat younger campers. A beautiful thing happened on that panel—I realized that I wasn’t alone in my perspective on disability. As I sat beside my cabinmates, and they brought up issues like being ostracized by able-bodied people, or their boundaries being ignored, or just simply, being treated like they weren’t fully human, I felt so validated. I felt almost euphoric because it hit me that I was in the right place. I finally had friends who shared some of my perspective.

Too often I feel like I am not enough. In the eyes of society, I’m not disabled enough, but I’m not able-bodied enough, either. I “pass” as able-bodied, meaning that people don’t always see my cerebral palsy, but as soon as my disability comes out, people view me differently. I talked so much with the girls in my cabin about their experiences with disability and came to realize that the mildness of my cerebral palsy didn’t matter at camp. They didn’t look down on me for how mild my CP was. They didn’t tell me that I shouldn’t complain because others had it worse. Instead, the girls in my cabin did the one thing I have always wanted: they accepted me and my CP for what it is, and for who I am. 

For once I didn’t feel like an imposter. I felt the most secure in my identity that I have in a long time. Often in society, the message is that if you are independent, you can’t possibly be disabled. I have tried to fight against these two conflicting parts of myself for so long. I want to be independent. I want to be validated as having a disability. You can have both. I can be both.

I learned so much about myself at camp. I learned that I can do things independently and away from home and not fall apart. I learned that I can do anything anyone else can—I may just have to do it differently. I learned to make waffles from scratch and to work together with people from all walks of life. I learned to drive with hand brakes! For a while I resented that I might have to drive with hand brakes, but now I understand it’s just a different path to independence. I learned that accepting myself as disabled wasn’t putting myself down. Considering myself disabled didn’t and doesn’t mean that I accept less for my life. The girls in my cabin taught me that separating myself from my cerebral palsy wasn’t healthy. It wasn’t helping me. Instead, I was just living in a big pool of denial with a heap of insecurity on top. Being disabled and secure in myself aren’t mutually exclusive. I learned to love myself a little more. After all, if some of my best friends at camp are disabled, how could I do anything but love that we share that connection?

Mostly, I learned that accepting my CP—not constantly fighting against it—can bring me good things in life. Without my cerebral palsy, I never would have met some of the most extraordinary people I have ever known. I wouldn’t have the genuine friendships I made at camp this week. I wouldn’t know myself as well as I do right now if I didn’t have CP. 

Going to camp this week was so good for me. I got to bounce ideas about disability off of other girls with my condition. I was able to interact with people in college (with and without disabilities) who are living their lives independently and successfully. I met people who don’t look down on me because of my disability, but they don’t deny that it’s there. My counselors love me and accept me just because I’m me. 

At camp I was a different person. I was confident. I was independent. I was secure in myself and my abilities. I felt worthy of having friends and of being a friend. I loved who I was at camp. I don’t want to lose that person, and I know she’s still in there somewhere. I just need to find her again. 

To my counselors and new friends from camp, thank you from the bottom of my heart. You opened my eyes and helped me understand that it’s most important to love myself—and that not all of society will judge me for circumstances out of my control. Everyone I was around brought out the parts of me that I like and embraced the parts of me that are flawed. I had so much fun just getting to be a kid with you all.