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.

14 Responses to “The Disability Fight: It Never Ends, Does It?”

  1. Letters to Little Man January 23, 2013 at 10:06 am #

    I love you, and think you are very strong and very, very brave 🙂

  2. insearchofitall January 23, 2013 at 11:11 am #

    We all sit in dispair some days for different reasons. I know that’s when I want to crawl in my cave and stay there. I am only debilitated by an illness, nothing compared to what you have dealt with. Everything is perspective. I was not gifted with loving parents or an opportunity to be educated. When I look back on my life, would I trade it for someone elses? Absolutely not. You have a strength of character and a perserverence of unbounded limits. It’s ok not to put on a happy face everyday. I always give myself time to feel the pain, pray and move on. It’s called life and it’s always lumpy. You might be interested in reading this ladies post. Like me, she’s older but also struggling. Keep on keeping on. I’d rather have my crookedness on the outside than on the inside. 🙂

    • ameliaclaire92 January 23, 2013 at 4:15 pm #

      Thank you for this. And I actually follow her blog as well. 🙂

  3. photosfromtheloonybin January 23, 2013 at 11:44 am #

    You are human and I think anyone in your situation would feel the same way. The difference with you is that you have fought every step of the way and have not let it stop you from achieving your goals in life. I mean look at all the things you have accomplished just in the last year!! You amaze me, and I admire you a great deal :).

    • ameliaclaire92 January 23, 2013 at 4:17 pm #

      Thank you for the support. I’ve needed it. Yesterday was rather rough.

  4. Arianna Merritt, M.Ed. January 23, 2013 at 7:23 pm #

    Amelia, your strength and courage continually inspire me. You are such a beautiful person inside and out (even though you may not always feel that way). Thank you for being you!

  5. stemcollege January 24, 2013 at 7:21 am #

    Sorry to be superficial for a moment – but when I looked at your “about” page the first thought I had was, “What a beautiful young woman!” I also thought that with your incredible smile you must light up a room when you are in it; I’m guessing that some people are looking at you in admiration, respect – even envy of your beauty. Some people are admiring you for your incredible spirit and zest for life.

    I know some days are so painful it would be nice to scream for a while and stay in bed reading and writing. You’re having a much bigger impact in the world than you realize as you take your spark, whit, humor and grace out into the world. Thank you for sharing yourself with us 🙂

  6. P. C. Zick January 24, 2013 at 7:33 am #

    I admire your willingness to share your honest emotions regarding CP. I’m preparing a blog about what happened to me a few weeks ago when I had to be in a wheelchair at the hospital. I’m suffering from a muscle and tissue disease caused by bad proteins being released into my blood. There’s a cure for it, but it will take time and there are days when I simply can’t walk long distances. That day in the hospital was one day as my doctor needed me to go to different places for blood work and other tests. When I sat in the wheelchair, I suddenly became a nonperson. No one would make eye contact with me, and they only spoke to my husband who was pushing my chair. It was an eye-opening experience in how the public perceives people with challenges. Again, I admire your courage and hope it opens others eyes.

  7. P. C. Zick January 24, 2013 at 7:35 am #

    P.S. I just posted to my Facebook timeline to make sure you receive wider exposure.

  8. wvfarm2u January 24, 2013 at 7:44 am #

    Thanks to PC Zick, I read your blog entry. It was when my now deceased husband needed a wheelchair to move more quickly (at an airport, for example) or cover long distances (at a crafts fair, for example), that I became more aware of the issues that movement disability faces. Before that, I had pushed a stroller, but having to negotiate steps and uneven surfaces is not as much of a challenge with a 30 pound toddler as it is with a 200 pound adult. The emotional blow is the other factor and your writing was a clear way for us to begin to understand what you deal with. Keep doing….it is important to look those people in the eye, smile and say hello…MAKE them acknowledge you as another human being.

  9. P. C. Zick January 29, 2013 at 5:18 am #

    I wanted you to know that I’ve nominated your blog for the Reality Blogger Award:

  10. terriedominguez January 30, 2013 at 1:15 pm #

    Amelia, I feel as though I could have written this blog post myself. I suffer from self consciousness also. It is a never-ending battle, but one we must fight every day to keep going. I find myself carrying on during the day like normal, then I’ll catch a glimpse of myself in a mirror and will be blasted back to reality. I see how my legs aren’t straight, or my right hand isn’t straight, and I feel that wave of self consciousness hit me. I try not to let the stares in public bother me, but it’s tough some days. Just keep pushing and moving forward. It helps to know we aren’t alone in the fight though. I’m right there with you!

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