Living with chronic pain at 22.

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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.

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Writing: A Therapuetic Tool

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When I started my first blog site back in November 2011, I read lots of articles about how to get increased regular readers as well as site views. Then, just like that, I stopped caring. I stopping caring about views, likes, shares, and followers. I realized why I had started blogging in the first place: to write, and to create a space in which I could receive support from others regarding my writing, and just life in general. After two years of blogging every day about whatever I chose, I had gained 1,000+ followers and around 500,000 blog views. I had gained readership, recognition, and support…and I had done it without following the advice of those pesky articles I obsessed over in the beginning.

Now, three years after starting my first blog, I have a second blog…one that is not at all connected with my first. Though I’ve only had this blog for a few weeks, I can already feel myself missing the supportive community I had developed through my first blog. Granted, I didn’t have to start a new blog. It was my choice to do so. Mainly, I changed things up because my first blog site name was connected with my geographic location, and when that changed, I assumed I needed a new blog site as well. Plus, since the move has been about the beginning of a new phase in my life, I wanted to start fresh in terms of blogging as well.

So, here I am, starting fresh. Though it’s been hard to realize it’ll take quite some time to get my readership up to where it was with my first blog, I know that, ultimately, that doesn’t matter. The reason I began blogging in the first place has been about one thing: my writing. And with this new blog, it’s become clear that’s the place I need to get back to. The place where I long to share the words within my soul…words of life, love, challenges, dreams, and hope. The words that paint a picture of my struggles, but highlight one of my proudest attributes: determination.

You cannot swim for new horizons until you have courage to lose sight of the shore.-William Faulkner

Writing, for me, has always been incredibly therapeutic. I’ve used it as a tool to get through tough times, to celebrate victories, and to reflect on experiences I’ve had throughout my life. More than anything, it’s through writing that I come face to face with the truest version of myself. With writing, I don’t portray myself as someone I’m not, I don’t shrink away from sharing that I’ve struggled with my physical disability, anxiety, and depression all my life. I don’t hide. It’s one of the few times I’ve ever felt safe enough to be totally and completely myself…even though my words may be read by thousands of people (or just a handful). 

We write to taste life twice, in the moment and in retrospect.-Anais Nin

So, starting now, I’m vowing to be true to myself (and true to this blog). I’m vowing to use this blog as a way to help myself while also helping others. For me, writing is freeing. For others, reading someone else’s writing is a chance to connect with them on some level. This life, I’ve learned, is all about relationships. Whether it’s a relationship with a close friend, a boyfriend, or most importantly, oneself, each relationship is essential to survival. They hold us together, bring purpose to our life, and help us to grow into who we are meant to be. 

Be yourself; everyone else is already taken.-Oscar Wilde

To those who taught me to dream

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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.

On What I Learned From Dying Children

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I read an article recently by a woman who teaches poetry and prose to dying children. Throughout the article, the author regularly mentioned how a certain little boy’s death would one day prevent her from ever returning to work. That little boy became another little girl who became yet another child. They all faced something we don’t talk enough about: death. Eventually, the author mentioned how this work contains so much sadness and fragility, and yet it is also the work she could never dream of walking away from.

From August 2013 to May 2014, I had a yearlong psychology internship with Arts For Life, a NC-based non-profit organization focused on teaching art to children and families battling serious illnesses and disabilities. Specifically, I worked with two populations of children: children undergoing treatment for cancer and other blood disorders and children undergoing physical, occupational, or speech therapy. I began this internship for a variety of reasons. However, the main one was due to my previous hospital experiences. As a child, I had to undergo three intense surgeries, which later included intense physical therapy, and I spent all this time in the hospital. During this time, the one bright spot in all the days of physical pain, tears, and uncertainty was the weekly craft nights. For one hour every week, I got to focus on making an art project rather than dwelling on how much pain I was in, which exercises I needed to do, or an upcoming surgery. Having a chance to put all my energy into something completely outside of myself helped to decrease some of my anxiety. Some of those nights, I dare say I might have even been happy. Due to my enjoyable experiences with art projects in the hospital, I knew I wanted to provide these same opportunities for other kids in the hospital.

Having the opportunity to teach art to children in the hospital was an amazing experience for me, and I loved every minute of it. I loved seeing the regular kids every week who finally became used to me and would come up and just start talking. I loved watching the kids burst with creativity, coming up with an alternative project I hadn’t even considered. I loved seeing the smiles on their faces when they finished their project and ran to show their parents. I loved finding new ways to teach the children. However, more than anything, I loved being able to take in all the different lessons they ended up teaching me without even knowing it.

They taught me the true meaning of strength. They taught me what it means to not let an illness define you. They taught me how “art” and “perfect” are rarely in the same sentence, and that’s perfectly okay. More than anything, they taught me the importance of noticing the small things. One little girl I worked with was battling cancer, and yet she was one of the happiest little girls I encountered during my internship. She smiled, she laughed, and she played. Most importantly, she did one thing I believe we often forget. She noticed every moment: every smile, every time of laughter, every speck of blue sky. She absorbed every single piece of life, soaking it all in. Though I try more and more each day to live like her, I still have a long way to go.

Numerous friends asked me how I was able to be around kids who were dying. And you know what my response was? “How could I not?” These kids needed me. They needed the chance to be able to fully express themselves. They needed a positive person in their lives who could bring something good into their hospital experience. They needed someone who cared. A few years ago, I never imagined that person could be me, and yet, those children gave me the most memorable 9 months of my life.

Though I never did lose any of the children I taught, it was a thought I kept in my mind. The more I read the article written by the woman who teaches poetry and prose to dying children, the more I’ve begun to understand that we all deal with death in our own way. How I might have reacted to losing a child I taught may not be the same way one of the child’s nurses might have reacted. That being said, the important thing to remember is even if I had lost a child I taught, there were still tons of other children who needed me. Though one day might have felt quiet as I mourned the loss of a particular child I cared for, there were always more children coming to clinic the following day, and I needed to be the best I could be for them. Being sad around them wasn’t my job. If I got sad, they might have become sad as well. That’s why positivity is so important.

Teaching art to children with serious illnesses and disabilities was not easy, but it was the first experience I’d ever had that made me feel a deep sense of purpose. Seeing a smile on a little boy’s face meant I was part of his happiness. Having a little girl cling to my leg begging me not to leave warmed my heart more than she will ever know. I just hope one day the children I worked with know how much they changed my life.