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.