How Camp Dream Street Helped Me Feel Whole

     This past month, I went back to Dream Street, my summer camp for kids with disabilities, and participated in Great Expectations (a specialized program for teenagers with disabilities that fosters independence) for the second year in a row.

     I was so looking forward to it, not just because camp is a fun experience, but because of how I feel about myself when I’m there.

     During the 360 days of the year when I’m not at camp (generally speaking), I feel like an imposter. Because my cerebral palsy is mild, I appear able-bodied when I’m really not. However, many people don’t consider me “disabled enough” to deserve accommodations despite my diagnosis. I sit solidly between the world of the able-bodied and the disabled. I try to hide my pain because there is no explanation for it, and sometimes it’s just easier than dealing with people’s reactions. But the consequence to that is I am often perceived as able-bodied, and I am not. An entire layer of my identity is ignored. In the real world, I am not disabled enough to “count”, but I’m not physically independent enough to fit in.

     As “mild” as my cerebral palsy is, my differences are glaring around people who don’t have mobility limitations. The way I walk brings many assumptions with it:

     My life is lesser because I’m disabled.

     I need to be protected.

     I’m incapable of being independent.

     At camp, however, I am seen as a person with her own autonomy. My cerebral palsy doesn’t walk into the room first. At camp, we walk together. My disability is accepted as a part of me without detracting from my worth—which, as far as I’m concerned, is how it should be everywhere.

      No one assumes things about me. My disability isn’t invalidated, but neither am I smothered by people believing that they need to keep me in a bubble. I am given the chance to prove I can be autonomous at camp, but I don’t have to prove my needs. My pain isn’t put on trial; instead, everyone understands that I will do whatever is in my power to keep going despite the pain, and that doesn’t mean I’m faking it.

     I have felt inferior for such a long time because I have judged myself by society’s ideals of what both a disabled person and an able-bodied person “should” look like. I don’t meet either expectation.

     I am not judged for the things that I’m not at camp. There are so many people at Camp Dream Street, who make up a whole spectrum of disability severity. I don’t feel like the odd one out. So frequently, disabled people are expected to adapt to the world. At camp, people adapt to me. Maybe I’m not what people expect. 

     But camp taught me it doesn’t mean that the way that I am is wrong. 

     Going to camp teaches me so much about myself every year. I always knew that I wanted to do something meaningful with my life, but I could never picture exactly how I would get there. I wanted to go to college. I wanted to live on my own one day. Up until I went to camp, I had never met a disabled person who had done those things—which doesn’t mean that it’s impossible, just that there isn’t much of a precedent. And that scared me. I wondered if I had the courage it took to blaze my own path.

     This year at camp, I realized my dreams are possible. There are people at camp who have gone to college, people who have left the nest—women I look up to—and they have done it all while being disabled. I have so much more hope for my own future now. I can still follow my own path, but I take solace in the fact that a road has been paved for me to travel. 

     Speaking of roads, I was given the opportunity to drive! After my surgery in 2023, I lost sensation in my feet. This means that I can’t feel the brake. Before I went to camp last year, I thought driving was a milestone that I wouldn’t get to participate in, but there are options. At camp, I drove a van using hand brakes, which I got the chance to do again this year. I realized that my cerebral palsy is not always something I have to fight against in order to achieve my goals. Honestly, I believe that’s what adapting with a disability is—not endlessly pushing to do things in the same way as everyone else, but finding a way to be independent, even if that requires modification. In this case (driving), I can acknowledge that my CP makes some things more difficult, but that doesn’t mean I should just throw in the towel. A lot of times, if I were to say, “I have CP”, that would be the end of the conversation. But cerebral palsy—or any other disability—is not a hard limit at Dream Street. I can do things with my CP, not in spite of it.

     I think that’s partially why I love Camp Dream Street so much. I feel broken a lot of the time—like my needs are too much, and I am not enough. But at camp, I feel whole. My identity isn’t fragmented into pieces. I don’t have to hide my cerebral palsy or my pain. I don’t have to prove anything. I just have to be myself. 

What It Really Means to ‘Overcome’ with Chronic Pain

 Overcome. 

Overcome is a very strong word, and I have tried to live by it for as long as I can remember.

Growing up with cerebral palsy, I learned very quickly that if I didn’t figure out a way to adapt and overcome my circumstances, I would be stuck. I wouldn’t be able to pursue whatever I wanted in my life if I let my cerebral palsy hold me back.  

I also realized that people respond better if there’s a triumph. People expect that there is a way to conquer every obstacle, and for a long time, I thought that, too. I can’t count the number of times I have heard “so-and-so has [insert disability here] but was able to go on to achieve so much in spite of it!” or “he/she got sick or broke a bone, but they’re all better now!”

I see how much people need a success story. That became my self-appointed purpose, to inspire others by conquering every challenge CP threw my way. 

So I became the resilient girl, the girl who overcame. I always told myself that whatever challenge I faced at the time would pass.

For my major surgery, when I had to relearn to walk, I repeated over and over in my head, This pain is temporary. I will be able to walk.

When I was put into casts every week, my parents told me, “This is the mountain you’re facing right now. Eventually, it will get better.”

Every Botox injection I’ve had, when I tried to dissociate even inside my own body, I would promise myself, This is almost over. You’ve done this before and you can do it again.

While I will live the rest of my life with my cerebral palsy, the challenges it presents—surgeries, procedures, casting, etc.—are temporary. I know that I will conquer these challenges, one at a time, and I will overcome them.

And then, eight years ago, I developed chronic pain.

I have built my identity around overcoming whatever obstacle life throws at me. In fact, I derived my worth from overcoming obstacles. Chronic pain was the one thing I couldn’t triumph over. No matter what I did, my chronic pain remained.

I thought that knocking down my obstacles was my purpose. If I couldn’t do that, where was my purpose? I felt that my identity had gradually disappeared and left in its wake a girl who had no idea what to do with herself. Chronic pain had already taken so much from me—sleep, concentration, the ability to do some of the things that I loved—and I desperately didn’t want it to take my identity away from me, too.

The longer I’ve lived with chronic pain, I’ve realized that my identity has to change. Overcoming chronic pain has to look different than overcoming my other challenges. Right now, my chronic pain is indefinite, and there is no amount of grit, determination, or sheer willpower that can conquer it. 

So that begs the question: What do I do with it?

If there is nothing in my power that can help me conquer this, how do I deal with it?

I have to find a different way to overcome.

I have to overcome my chronic pain day by day—I have to learn to live with it.

I’ve wrestled for a while with how to overcome my pain. For so long, I’ve been the girl who is strong. I’ve been the girl who adapts.

I love that girl and I would never want to change her.

But I’ve also been the quiet girl, who constantly apologized and was ashamed of what her body asked for. That identity meant safety for a while, but I don’t have to be that girl anymore. I don’t want to be her anymore.

With that in mind, here are four ways I can overcome chronic pain, even if—especially if—there is no end date.

1. No apologizing for things that are out of my control.

I do this all the time—to my parents: “I’m sorry my pain won’t go away”, “I’m sorry my answer to ‘how are you feeling?’ doesn’t change?”, to my teachers: “I’m sorry I need help,” to my friends: “I’m sorry I can’t stand with you.” I apologize constantly for my body’s limitations, and it is draining. I apologize because I am deeply ashamed and I feel like a burden. 

But my body’s limitations are not my fault.

The people who love me will never view me as a burden.

When I apologize, it reinforces that I need to apologize. I can’t change my body. I can’t change my pain. It’s time to stop apologizing for that. 

I no longer want to be someone who apologizes for things out of her control. 

2. Stop resenting myself for what my body can’t do.

Chronic pain is difficult enough on its own. If I carry around constant resentment of my own body, I will become bitter very quickly. Also, it’s not fair to all the effort I’ve put in and all that my body has been through to resent it. 

3. Do what is best for me, regardless of what other people think.

The things that help my chronic pain are not always as under-the-radar as I would like. I started bringing a heating pad to school because it turns the dial down just a little on my pain. I’m not sure what people think—maybe some of them think I’m dramatic. They might think it’s weird, and a few probably do.

I haven’t stopped caring what people think. But part of overcoming my chronic pain every day is my decision that my health is more important.

4. Don’t allow my pain to take more from me than it already has.

My pain has taken enough—sleep, concentration, the ability to ride in a car for a long period of time, and some of my control. I will not let it take my happiness. 

I don’t know if my pain will ever stop. I can’t wait until I’m not in pain anymore to be happy, because that day might never come. I am determined to live as fulfilling of a life as possible—if I have to do that with pain, so be it. Not in spite of my pain, because that’s not what overcoming an obstacle is. Overcoming a challenge means that life has dealt you a difficult card, and you live your life with that card anyway. 

I may not be able to control how much pain I’m in on a day-to-day basis. I can’t control what my body is able to do. But I can make the choice to wake up every day and keep going, and that’s what I choose to do.

Overcoming chronic pain isn't necessarily about eliminating the pain. Overcoming chronic pain is about continuity, not triumph. 

The four things above may not seem like a big deal to you. But to me, they make the daily battle of living with chronic pain just a little bit easier. And choosing to fight that daily battle, even if it is never truly “won”, is what I believe overcoming with chronic pain really means.

If I Could Speak Honestly to My Body, I Would Say This

I wrote this open letter to my body because I’ve been struggling with my relationship to my pain. My chronic pain has spread and I have wrestled with anger and continuous grief while trying to reevaluate my identity. I also wanted to honor everything my body has been through and done for me. This letter feels like the most honest thing I’ve written in a long time. 

Dear Body,

I know. I know you’re hurting. I feel you. I’m so sorry. I’m sorry you have to hurt. I honestly feel more compassion for you than I do for myself at the moment, because you seem almost outside of me sometimes. I’m sorry that I felt no choice but to separate from you. One of my biggest fears is that my identity will always be wrapped up in you, and I am so much more than any ability I have. 

I’m sorry for all the things you’ve had to go through. I know you didn’t ask for all of the painful injections, unpredictable procedures, therapy treatments, and numerous medications, and I know it’s not your fault that you needed them. I realize now that you didn’t get the help you needed, and you had to support the left leg all on your own. Considering that, it’s a miracle you could hold the pain off as long as you did, and I thank you for that. 

I resented you for so long. All that you couldn’t do, the fact that you made me different. I didn’t realize how hard you had to work just so I could move with at least some vague sense of normalcy. I didn’t want to work with you because you wouldn’t cooperate with me. All that time I was fighting with you I was really hurting myself.

My frustration with you made me push to the limit at times. Looking back, I’m sorry you had to be on guard. You shouldn’t have to be on guard from me, but I was so determined to prove that you could not hold me back. I chose to push you past your breaking point instead of sacrificing my dignity. 

I miss how you used to be, but I also understand that you can’t hide the effort it takes to move anymore, and you shouldn’t be expected to. I know that my chronic pain is simply an alarm you can’t turn off. You’re trying to protect me because you can’t predict what will hurt next, and you want to brace for impact. 

As I’ve gotten older, I’ve realized that most things come with a price, especially in a body like mine. 

The price you had to pay to protect me was pain. 

And now the pain signals won’t shut off, but it’s not because we did anything wrong.

The alarm is still there because you did what you had to so I could function. 

But you don’t have to protect me anymore. I am no longer the nine-year-old girl I was. I am no longer the stubborn child who resented and pushed every way I could. (Well, maybe I am a little bit.) You can let go now. I’m stronger than I was, and I’m definitely strong enough to know how to protect our physical limits. 

I am so innately connected to you that I couldn’t ignore you even if I wanted to (and believe me, sometimes I really want to). I know every scar, every nerve and muscle (even if I don’t know all the names yet) of you and how you react. I am so tuned to your every impulse that it’s like I’ve lived with you for 80 years instead of just 17. 

And that’s the key, I guess. I’ve lived with you. You are not my enemy and I am not yours. We’re stuck together on this journey called life, whether I like it or not. 

And to be fully transparent, I don’t always like it. This body comes with terms and conditions that I did not agree to. I have lost so much because of the way you are. I have lost the ability to sleep, concentrate, sit for a long period of time, and just to be a carefree teenager. Other people’s bodies do not protect them in ways that sometimes feel more harmful than helpful. Other people do not live in severe pain every day just because of the wiring of their nervous systems. I know it’s not easy to be my body. But I need you to let me go. I need you to trust me.

It’s okay to grieve what you had to do to protect me. I’m sorry for that sacrifice. But you don’t have to hold that burden anymore.

I promise I’m trying to do what’s best for us. You’ve tried to take care of me the only way you know how, and now it’s my turn to take care of you.

I got this. I’m our biggest advocate, and I can’t afford to let you down anymore. More importantly, I am not going to let myself down.

Ainsley

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.