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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11 Responses to “It’s an everyday battle.”

  1. photosfromtheloonybin November 15, 2012 at 7:52 pm #

    There’s absolutely nothing wrong with having a good cry and feeling sorry for yourself as long as you get right back up and keep going. You’re only human right? But seriously, Amelia, you are one of the strongest people I know, and a lot of people could learn a great deal from you!

    • ameliaclaire92 November 15, 2012 at 10:08 pm #

      I definitely believe that having a good cry is sometimes necessary. Thank you for your support.

  2. Janine Huldie November 15, 2012 at 8:17 pm #

    Amelia, let me say this one thing, I cannot even imagine what you have gone through in the twenty years that you have been alive, but from the posts I have read here my hat goes off to you, because you truly are a very strong, brave and courageous young woman and I think from my heart for sharing about your life’s journey and struggles here. You never cease to amaze and that said everyone does have their bad days and can’t say I blame you having your moments, but so glad that I have gotten to indeed know you a bit better here 🙂 🙂

  3. Lisa W. Rosenberg November 15, 2012 at 9:13 pm #

    Amelia, I think I’ve commented before on how strong and brave I think you are. This post is so brutally honest about the bad days, the falls–which sound really scary–and how hard it is sometimes just to BE. It takes a really amazing person to be able to make her pain real and tangible to people who have not lived it. Your book will be absolutely great whenever it is done, no matter how hard it is to write it.

    I wish you many good days, and on the bad ones, know that all your followers are rooting for you.
    🙂

    • ameliaclaire92 November 15, 2012 at 10:12 pm #

      Lisa, it’s because of people like you that I’ve felt so comfortable in the blogging community. I never knew there was a place where I could completely be myself and receive unwaivering support all at the same time. Also, thank you so much for your support regarding my book. When people let me know how much they are looking forward to reading it, that’s just the kind of push I need to keep on keepin’ on.

  4. Julia Dean-Richards November 16, 2012 at 1:08 pm #

    Love and strength winging its way to you x

  5. lsotera November 16, 2012 at 2:08 pm #

    I may not know you, but I find you incredibly awesome. Keep on trucking.

  6. alysha.greig November 18, 2012 at 3:15 pm #

    Amelia – it is a gift that you have to be able to write about your struggles in an open and honest way. One thing I’ve learned from writing, blogging, and even publically speaking about my own life struggles – is that it is so, damn, hard. But absoutely necessary. The beautiful thing about writing, blogging, sharing our stories – is it helps us be connected to each other. To gain the knowledge that we’re never alone in our “everyday battles” is life changing. We all experience suffering, and through the prism of our tears… we can find purpose and light in the midst of situations that seem dark and hopeless. Be proud of yourself for being a fearless and courageous story teller.

    And on a side note – have you tried yoga? Read this article, it might interest you.
    http://www.livestrong.com/article/367150-yoga-for-cerebral-palsy/
    Love, Alysha

  7. Feroza November 19, 2012 at 2:42 am #

    Hey Amelia,

    Just happened to go through some quotes on the web as was feeling too low so randomly typed and came across your blog and read on..your are such an inspiration i can say tat after reading some of your blogs.I know how hard it is to go through such pain as I my self is on medication for Rheumatoid Arthritis and the i can somewhere relate to your pain. I know life is hard but we gotta be tough and you are certainly are one tough girl out there. You are so young yet you words are so powerful and deep it can touch million hearts….Keep it up …keep going strong this world needs such inspiration….Love you:)

    Will be regular to your post now……lots of love n joy to you.

    Luv & Luck
    Feroza

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