Tag Archives: Physical Limitations

The Disability Fight: It Never Ends, Does It?

23 Jan

I am still incredibly self-conscious in regards to the physical aspects of my disability. Though I may have reached a point where I am able to talk about my disability with more ease than ever before, I still haven’t developed a sense of confidence when it comes to the physical differences related to my Cerebral Palsy. I shrink away from the differences, silently wishing they were a part of someone else and not me.

When I see the severe curvature of my lower back in a mirror, I cringe. In the summer, when I give in and put on a bathing suit because of the heat, I hate to look down and see the scars on my legs from my intense surgeries. In just one moment, I am transported back to my intense surgeries, all the physical therapy I endured following those surgeries and the nights I’d wake up screaming and in tears because of the pain that seemed to come from everywhere all at ounce. When I am about to walk inside of a building and I see the reflection of myself in a door, I look away. I don’t have to look at my own reflection to know the way I’m swaying side to side as I walk with a visible stiffness in my legs. I don’t have to look at my reflection to know the way my knees still knock inward and the way I’m up on my tiptoes despite the operations I had to straighten my femurs and try to decrease the spasticity in my legs. I can formulate a picture in my head of myself walking that’s so accurate I want to scream. I’d give anything to not know every single detail of how the way I walk is different from how the average person walks. A part of me hates myself for my self-consciousness in regards to my walking. I spent my entire childhood going through intense surgeries and 15 years of physical therapy to reach a point where I could walk on my own without assistance and be as independent as possible. It’s not that I am not proud I can walk. I am. I know I should be jumping up and down on a daily basis because I am able to walk. But I don’t. I just can’t make myself do it.

If you were to ask me whether I’d choose to have CP over not having it, I’d say I’d rather have it because it’s made me into a much stronger person. But if you were to ask me if there’s anything I’d change about myself, I’d tell you that all I want is to look like everyone else. I don’t want to always be the target of stares from toddlers, and even adults, in grocery stores. I want to be able to stop having to cringe at the severe curvature of my lower back or look away from my scars and the pain I remember and still feel. I want to stop having to look away from my reflection because my knees are knocking together and I’m up on my tiptoes. In a way, that’s what all of the physical therapy and surgeries were for. It was to get me as independent as possible, or as close to being like everyone else as I could get. But even with all that work, I’m so far from being where I wish I could be. My balance sucks. I can’t go up or down stairs without a railing. I can’t put on a pair of pants without needing to be in a seated position. And on the days when I think of the things I can’t do and I’ve fallen more than what is normally expected of me during the course of a day, I cry. I cry because it is so, so hard to keep fighting this. No, I am not faced with a life-threatening health problem, so I’m not fighting for my life necessarily. But I’m still fighting just as hard. And it takes every ounce of strength in my body to wake up every morning and make the choice to face it all…again and again, even though all I really want to do sometimes is pull the covers over my head and hide.

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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.

When in Ireland, write through the uncertainty.

2 Jul

I have yet to sit down and write since I’ve been in Ireland (not counting this blog). I really do hate to admit that, even though I do have a pretty solid excuse of: I’m in Ireland. However, over the past few days, that hasn’t really felt like a reasonable excuse, partly because there have been snippets of days that I’ve just sat at my computer wondering what to say.

Attempting to work on my memoir while I’m here feels out of place and very foreign. And yet, at the same time, I hear that voice in the back of my head asking why it seems like such an impossibility. Truthfully, I can’t see why it is. Maybe it’s connected to the fact that I’m doing something huge right now and I want to enjoy every minute of it. Though I have no doubt that that may be part of it, I also know that my strong need to write has increased since coming to Ireland. I don’t know if it’s the beauty, being in a completely different country, or just being surrounded by so many different people. However, either way….I feel it. I feel the wheel’s turning in the way that only a writer’s mind can work, and I’m done ignoring it.

A few years ago, if someone would have told me that I’d be sitting outside of an Ireland university typing a blog post, I probably would have just smiled nervously and pushed it out of my mind. Come to think of it though, not much has changed…except for the fact that I am now in fact here, sitting outside of an Ireland university typing a blog post. The thing is, I’m still scared. I love it. It’s exciting and new and wonderful, but I don’t think I’ve ever been more scared. Not of anything in particular really. Just the uncertainty. The uncertainty of not really knowing what the next few weeks hold, all the while realizing that I’ve just got to grab it by the hand and run like hell with it. I don’t really have much of a choice at this point.

Uncertainty can be truly terrifying. Though I know I’m not to the point of “terrified,” this trip has tested my limits in ways I’ve never been tested before. Though I am with a group of students, I knew no one before coming over here…meaning that no one knew anything about me until they saw me on day one. There’s something wonderful as well as scary about that…having people around me who don’t know my history, my past, what I struggle with. Though I have only mentioned my CP to 2 people so far (my roommate and a guy in my group who asked last night), sometimes I have the urge to scream it from the rooftops while other times I’d rather just sit in silence. It’s hard to not say anything when I’m sure people are wondering why I’m lagging behind the group a bit or why I’m not staying in the same housing as the rest of the students in my group. Yes, a huge part of me is screaming, “It doesn’t matter!!!” but another part of me is wondering, “Would it put me at ease if I didn’t constantly have the worry about my group leaving me behind?”

My program directors know my situation, and they have been sure to include me in everything and make sure I’m an integral part of the group, which is good. However, that doesn’t mean that I don’t sit and worry about the group leaving me behind. Thankfully, it’s not a new worry, though at this point I don’t know if that would be considered good or bad. However, it is something that I’ve had to consider every time I’m put in a situation where a group of students is going somewhere, especially when it’s a kind of walking tour. Oh, walking tours, they are the bane of my existence. Okay, maybe not quite that extreme, but they still suck. So, that being said, the worry is not a new kind of worry, but I guess it’s at a new level, especially considering the fact that I’m in a new country with people who I don’t exactly know exceptionally well.

Realizing that this is something that no one else in my group is struggling with is hard, but it’s not a realization that is new to me. However, sometimes it would be nice if my worry was more “normal,” like worrying about cultural differences or staying in touch with people. Even though those worries have been on my mind, my mind is primarily reeling with the thoughts of trying to enjoy Ireland as much as I can without overexerting myself and trying to step out of my comfort zone to the point of where it gives me a thrill of excitement but not to the point of being utterly terrified.

So yes, the writing…the words…they were there. I guess I just need to sit down and sort through them, even if they don’t exactly flow. But you know, sometimes writers need disorder and chaos and confusion, and above all, uncertainty, to get back on track again…to feel somewhat in control again.

A Moment Of Being A “Normal” Kid.

28 May

It doesn’t happen often, but every once in a while I think back to the years before my surgeries and intense physical therapy, the years that I got to be a normal kid like everyone else my age (excluding the fact that even then, I was going to physical therapy twice a week).

I played t-ball and coach’s pitch before all my surgeries, and when I think back on those years, I remember just how happy I was. Even though I still walked different during that time (as I have my entire life), I was able to do everything that every other kid on the baseball team could do. I cheered in the dugout, went up to bat, stood in the outfield waiting for a ball, and walked with the rest of my team to high-five the other time while saying “good game,” even if we lost. As well as feeling like a normal kid, I was also able to be part of a team, and looking back, that meant so much to me. I don’t remember being made fun of during those moments, and though I probably was, I can’t remember it, and that’s when you know you’ve got special memories.

Specifically, I remember one of the games when I played coach’s pitch. I was up to bat, and Mr. Richard, my coach, stood on the mound smiling at me. He pitched the ball, and even though I hit it, it didn’t go far. It landed close to Mr. Richard’s feet. Even though there was a player from the other team standing behind Mr. Richard, Mr. Richard grabbed the ball and kept it away from him. At the time, when I was running to first base, I didn’t know what was going on. I just knew that the first baseman hadn’t caught the ball yet, so I kept running. As I was almost near third base, the biggest grin spread across my face as I realized what Mr. Richard had done: he was giving me my very first home run. I remember running as fast as I could from third base to home plate, and as soon as my feet touched home plate, everyone in the crowd jumped to their feet and cheered for me. In that moment, I felt like I was on top of the world, and more than that, despite my limitations, I had made a home run, just like every other kid on the team had at one time or another. It was a magical moment. There’s no other way to describe it.

I think about Mr. Richard every once in a while, and even though I haven’t seen him since I was a kid, I sit and wonder if I ever thanked him. I’m sure I must have, in one way or another. Whether I thanked him through the huge grin that remained on my face through that entire game or through one of the countless hugs that he became so accustomed to receiving from me, I’m sure he could tell how grateful I was for that moment that he gave me. However, sometimes I wish that I could explain that for me, that moment is one of the most special moments I’ve ever had. I got to be like a normal kid, and I got to feel the rush of happiness and excitement that comes with completing a home run. If only for one night, I wasn’t someone with Cerebral Palsy. I was a baseball player, a team member, and probably one of the happiest people in my small town, even if only for a moment.