Tag Archives: Finding Joy

It’s an everyday battle.

15 Nov

When I started writing my memoir of living with Cerebral Palsy last January, in the back of my mind, I think I believed that I’d be able to write everything out and then I’d feel tons better or that my past wouldn’t control my thoughts so much. No, my Cerebral Palsy doesn’t define who I am. However, I’d be lying if I said that it didn’t have a constant effect on my thoughts. When I first starting writing out the hard memories, it hurt, but it felt good too. It made me cry to bring up so many memories that I didn’t want to ever look at again, but it also brought me closer to those around me. My mom and I started getting along better. My friendships improved. For the first time, I could honestly say I was completely myself because I wasn’t allowing myself to hide behind the pain that dominated my life for so many years.

However, despite the beginning benefits of writing about my life, currently I don’t always feel like the benefits outweigh the pain that still lingers from my past. Truthfully, this wouldn’t be so hard to handle if things weren’t so physically hard for me lately. I’m falling more, but it’s not even the falls themselves. It’s the fact that I’m able to feel them before they come. My muscles get super tight, I start to walk on my tip-toes, and I get nervous. Since I know that I am about to fall, I become afraid to move. However, the more nervous and afraid I get, the more I tense up, which increases the likelihood that I’ll fall in a number of minutes. It’s heartbreaking, truthfully. Heartbreaking in the sense that I know I’m only 20 years old. I don’t even want to imagine how my muscles will be cooperating 10 years from now.

Even though I may have finally faced the pain and memories that dominated my past, will I be able to deal with the struggles that are in my present just as easily? Will I have to wait 20 more years before I can come to some kind of understanding? Truthfully, will I ever understand? Will any of this ever make sense? On the good days, the days that I’m happy and I have people around who love me, I’m able to stay pretty upbeat and optimistic about my situation. However, on the bad days, the days when I’ve already fallen 4 times and my back hurts, all I want to do is sit on my bathroom floor and cry. Though I know that may not seem like the greatest decision, what do you tell the person who’s been strong for so long? My entire life, the gusto has pushed through. My pure love of life has pushed through. However, as the years go by and the back pain and falls increase, it’s hard to carry that same level of strength. I’m trying though. I’m trying because I want to find enjoyment in my life, and I know there are so many people who love and support me and want to see me succeed.

I think what many people don’t realize is that living with Cerebral Palsy is an everyday battle. It’s not as if I can say, “Oh, my past is behind me. The hard part is over.” Though that may be true and though I am relieved to not have to undergo any surgeries right now, that doesn’t mean things are “easy.” I wake up every morning with back pain. Though I fall asleep best on my stomach and I’m not a restless sleeper, it becomes a problem when I wake up with a stiff back and normally stiff legs. Some days, it’s hard to walk easily. On mornings when I wake up extremely stiff, I debate whether I should crawl to the bathroom rather than risk falling and getting yet another bruise. Even though the bruises normally end up in places that people aren’t able to easily see, that doesn’t mean that they aren’t there. Though living with Cerebral Palsy may be something that I’ve gotten used to just because I’ve had no other choice but to adapt, that doesn’t mean that it’s still not a struggle to simply be happy. In all actuality, it would be so easy to slip into pity and just curl up in my bed and cry. For me, every single day is a battle. But I get back up, even if it means that I’m still crying.

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The Summer of the Lightning Bugs.

18 May

When I was growing up, summertime in the mountains of Saluda, North Carolina, meant catching lightning bugs after dark. To some they are known as fireflies, but ever since I’ve been coming to the mountains since I was a kid, I have always called them lightning bugs.

When the summer nights rolled around, I’d go into my grandmother’s kitchen in her mountain house and find a jar for lightning bugs, which often turned out to be easier said than done considering all the different things that could be found in my grandmother’s kitchen. Though it would seem like finding a jar for lightning bugs was easy, in my grandmother’s kitchen, the one thing you were looking for was often the one thing that you couldn’t seem to find. Most of the time I just used a regular mason jar and then poked holes in the lid using a knife. That way the lightning bugs couldn’t escape, but it would still allow them to stay alive.

Catching lightning bugs is a lot like looking for shark’s teeth or pieces of sea glass on the beach. You’ve got to let your eyes adjust to your surroundings before you can focus on your goal. When searching for lightning bugs, that goal is a flicker of a greenish-yellow light that can be found anywhere from the right of an old tree trunk or to the left of your hand that’s clutching the mason jar, waiting for the moment when you can open the lid and put your treasures inside.

When I first started catching lightning bugs, the only thing I really understood was that I had to wait until it got dark to catch the bugs that light up when you cup them in your hands. In those days, my mom or dad would come along with me to hold the jar so that I could focus fully on spotting the lightning bugs. Once I caught one, my mom or dad would be right behind me with the lid already open so I could put the lightning bug inside. Sometimes, however, I’d get tricked. I’d think that I caught a lightning bug, but then I’d open my hands a little bit to place it inside the jar, but my hands would be empty. Even though I got frustrated when that happened, I’d turn back around and keep looking for the green flicker that was my sole connection to warm summer nights in the mountains.

Even when I got old enough to carry the mason jar and look for lightning bugs by myself, the experience held the same excitement as the early days. I’d eat my dinner as fast as I could, and then my eyes would dart from the window to my one of my parents, eager for the go-ahead that I could go outside to catch lightning bugs. When I reached the age where I didn’t have to have one of my parents go with me, I developed my favorite spots around my grandmother’s house to catch lightning bugs. My favorite spot was the “mini garden” right above my grandparents’ house that had 3 bushes in a row, flowers dotted all around, and a bench off to the side of the grassy area. This was one of my favorite spots because even though it was part of the yard, it seemed secluded in its own way. Plus, since it was a grassy area rather than gravel or pavement, I could comfortably sit down on the ground and look at the lightning bugs that I had caught. For me, the evening of catching lightning bugs was over when I was tired and yet completely content. I didn’t base the length of time that I was outside on how many lightning bugs I caught. If I did that, I probably would have stayed outside until my parents would have to come get me for bed. I never cared how many lightning bugs I was able to catch. As long as I had one, I was happy.

For me, one of my favorite parts of catching lightning bugs was after the whole experience outside was over. Then, I’d get to curl up in bed and place the jar of lightning bugs on my bedside table. When my mom or dad would turn out the lights, I’d star at the green flicker in the jar that meant life, looking at the simple insect that had the power to hold my childhood concentrate for hours outside. And after one last look at my lightning bug treasures, I’d roll over and let the hum of the cicadas rock me to sleep, anxiously awaiting the next evening to arrive so that I could once again, however briefly, catch a little bit of magic.