Living with chronic pain at 22.


These days, when I think about what’s hardest about my CP now that I’m in my 20s, I’m not true to myself. Rather than focusing on the chronic back pain I’ve had since I was 15 (that is only getting worse), I focus on the frustrations of not having the same stamina as the rest of my peers, not being able to carry food in both hands if I’m walking somewhere because I get too anxious I’ll fall and spill the food, and the deep fear that surrounds me any time I have to step down from a curb or walk down steps (that have no railing) and there’s no one around to offer me a hand.

Don’t get me wrong. Those frustrations make my days hard too. However, those frustrations aren’t as intense as my chronic back pain, which typically can cause me to start crying rather suddenly, especially if I’ve had a back spasm. Truly, the one frustration that has the ability to quickly bring me to tears on a daily basis is my chronic pain. Because of my Cerebral Palsy, I have developed chronic back pain because of how my body has had to adapt in order to allow me to walk. Basically, my hips are tilted forward and in order to walk the best I can, my back is arched so I can see where I am walking (which results in a deep curve in my lower back). For those wanting a more clinical term, it’s known as hyperlordosis, meaning increased lower back curvature.

Due to the hyperlordosis and the pain it causes, all I really ever think about is the possibility of one day feeling some relief. In terms of treatments for the lordosis and the pain, surgery isn’t an option because it would mean having to change the position of my hips, which doctors have said is too risky. Truthfully, my immediate thought is pain killers, but then comes the discussion regarding the addictive quality of pain medication coupled with the fact that I’m only 22, so that’s also a no. It’s just so damn frustrating. I’m 22, I have chronic pain, and it seems as though the only way to eliminate my chronic back pain is to essentially stop walking all together. Now, those who know me know why that isn’t an option, but for those who don’t: Basically, I spent my entire life learning how to walk so I could reach a point where I could be independent. By the age of six, I was walking unassisted. Then, in 2002, I had my first operation and had to relearn to walk. The following year, after another operation, I had to relearn to walk again. Therefore, once again, making the decision to stop walking in order to eliminate my back pain: also not an option, especially with how active I am for someone with CP. In terms of alternative methods to relieve pain, I do yoga and I get massages. However, those options only work in the moment. As soon as the yoga or massage is over, and I leave to get on with my life, the pain returns.

Truthfully, only a few people actually know the degree of pain I’m in on a daily basis. I don’t talk openly about it much because in my mind I feel as though it’s pointless to burden others if I know there’s nothing they can do to help me. Yes, sometimes I need a hug or a simple “You can do it,” but most of the time, what I truly need can’t be given to me. Additionally, receiving support is also challenging given my age group. How many people do you know who are in their 20s and living with chronic pain? Not many, I’m guessing. And that’s why I feel so alone so much of the time. I can’t help but focus on the difficulties of suffering from something no one around me seems to understand. Sure, they can sympathize with me, but that’s not the same as having walked in my shoes.

For much of my life, I’ve also struggled with depression. Last week, while visiting a counselor, he offered what seemed like such an obvious conclusion, but I hadn’t connected the dots until he brought it up: the link between chronic pain and depression. They influence each other, which is something I hadn’t thought to consider. Because of my chronic pain, I’m more depressed. Basically, the counselor thought of a “treatment” for my chronic pain I hadn’t yet considered: a chronic pain support group. Honestly, I hadn’t ever thought about it, but now, the more that I do, the better I feel. The thought of having the support of a group of people who know what I feel sounds too good to be true. Best of all, I’ll have the chance to talk with everyone in the group to see how they manage their pain. Who knows, maybe they use techniques I haven’t considered.

Keeping my fingers crossed.


To those who taught me to dream


When I was little, I wanted nothing more than to be a ballerina. Around Christmastime, my grandmother would take me to see The Nutcracker at the Koger Center. As I sat up in the balcony in my checkered dress and patent leather shoes, I stared with admiration at the character of Clara. I imagined myself twirling around in my own leotard with a toy nutcracker in my hands, lost in the music and a dance that was all my own. When I got home from seeing The Nutcracker, I’d put on my leotard and tutu, grab a favorite stuffed animal at the time, and twirl in circles to the music only I could hear.

It was in those moments, in the safety of my childhood bedroom, that I began to dream, imagining doing things I knew I wouldn’t be able to do in reality due to my disability. I imagined dancing with a grace I had seen only in ballerinas. I put on my ballet shoes and twirled until my unstable balance got the best of me and I fell to the floor in frustration. I even remember asking my parents if I could take ballet lessons, determined to learn how to create the beauty I had seen in the character of Clara. The opportunity never arose though, simply because I didn’t have the balance to be a ballerina. Despite walking on my tiptoes, twirling around in circles on those same tiptoes was out of the question.

As I got older and I filled my head with more realistic dreams, I never stopped imagining doing the things I’d never be able to fully experience. I thought of dancing to the music of my world. I imagined running down the street and feeling the wind on my face as I chased the orange and red sunset I saw in the distance. I pictured myself climbing the huge oak tree in my backyard, wanting nothing more than to find a sturdy limb I could sit on so I could rest my back against the tree’s broad trunk and escape into my favorite book. The creative imagination I possessed placed me right into the worlds I dreamed, though I knew I was so far away from actually experiencing them.

I am forever grateful to the people throughout my life who have encouraged my imagination and dreams. Though I was constantly reminded by other kids around me of the things I was unable to do, so many of the adult figures in my life understood the importance of believing in my creativity. Because of those individuals, I have learned what it means to still hope and strive for the things that still seem a bit out of reach. Through my ability to dream, I developed a determination that has propelled me through my life, despite stumbling again and again. While I may not have had the chance to be a ballerina who twirls endlessly with the grace of a perfect melody, I have sung my heart out at a voice recital, capturing an entire room with the simple sound of my voice. I have participated in theatre productions, achieving my moment in the spotlight by being Glinda the Good Witch in The Wizard of Oz. I have written of specific moments of pain during the months following intense operations, creating the same tears in the eyes of my readers that I possessed during my moments of defeat. Though I may not have had the chance to live the experiences I longed for, I have continued to move to the song of my own life, continuously grateful to those who taught me to dream and create my own destiny.