Tag Archives: 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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Almost a year ago…before the writing began.

24 Dec

Since tonight is Christmas Eve and tomorrow is Christmas, I thought I’d share a picture I came across today from last Christmas.

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It’s crazy to think how much can happen in a year. This time last year, the idea of starting my memoir of living with Cerebral Palsy hadn’t come into existence quite yet, and in all actuality, that is hard for me to believe. I remember how, on a cold winter day in January, I made the quick and impulsive decision and said, “I’m going to write a book about my life!”

A few days later, after I had spent many hours just writing, writing, writing without even thinking of stopping, I emailed two very important people in my life: my writing mentor and my freshman English professor from my previous college, both of whom have always been incredibly supportive of my writing. Both of them have always been big supporters of me in general, and so I wasn’t surprised to receive positive reactions concerning my decision to write a book about my life. Though I did receive support from both of them, I sensed hesitation, and truthfully, I’m still unsure if that hesitation was just my own lack of self-confidence coming to the surface or whether it was something else entirely. Either way, at those very beginning days of my memoir, when only the first thoughts of it were being formulated in my mind, I never thought I’d reach the point where I could talk about my past with such ease. Granted, there are definitely memories that still cause me to pause simply because I haven’t quite gotten the guts to pull them out of the black box they have been hidden in for so long, but considering where I was this time last year, I’ve come very far.

Truthfully, it’s because of the support I’ve received from my mentors, friends, family and all you lovely fellow bloggers that I have made it to this point concerning my memoir. Though the amount of pages I have written is incredibly, incredibly slim considering a full year has passed since I began, most of my writing took more mental preparations than I anticipated in the beginning. Though I wrote like crazy in the beginning month of beginning my memoir, that “early fire” started to fade when the emotions of what I was doing began to fully set in. Since then, I have continued battling those emotions, and those battles have taken up more time than I anticipated….time that could’ve been spent writing. However, I needed to give attention to those battles…to all of the emotions that were being brought to the surface after essentially burying huge chunks of my life in boxes in the back of my mind. Therefore, though I don’t have very many pages to show for all that I have trudged through over the past year, if anything….I know what I have finally faced…and what I have grown from.

Therefore, I wish to say thank you for every single one of you who have been a part of the supportive hug I’ve been receiving for the past year. To family, friends, mentors, and fellow bloggers…thank you for sticking with me through the really hard writing days, the really good writing days, and all those days in between when I was either talking about my memoir or talking about a certain memory from my past. Though there is still a very, very long way to go, I know from experience that the beginning of a project…or the simple act of even starting it…is the hardest. Though there were many days throughout the last year that I either debating stopping or could no longer remember why I was putting myself through the pain of writing and reliving the hard parts of my life, I kept at it. I kept at it for you, for me, and for all the families and kids dealing with a disability who just need someone to relate to or someone who understands or someone who they can look to and say, “She made it through. So can I.”

As well as my many thanks and lots of love, I’d also like to wish all of you a happy holiday season. 🙂

The problem with the word ‘disabilities.’

26 Sep

“Part of the problem with the word ‘disabilities’ is that it immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can’t feel? Or talk about their feelings? Or manage their feelings in constructive ways? What of people who aren’t able to form close and strong relationships? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the real disabilities.” -Fred Rogers

Due to the presence of a new person in my life, I’m slowly beginning to understand what has set me apart from so many others with a similar disability (and even those who are non-disabled): my drive. Yesterday, this particular new person in my life said: “You have incredible drive. It’s what I like about you. If you’re standing at the bottom of a hill and you know that you’ve got to get to the top, you’re going to find a way to reach the top, even if it means that you have to push yourself harder than ever before. I admire that so much.”

Even though I’ve known that I’ve had an incredibly strong drive for the majority of my life, giving up or walking away from something just because it’s hard has been something that I don’t consider often simply because in my mind, in terms of my disability, I’ve never had another option. I pushed through because I had to. However, due to the current new person in my life, I’m beginning to see that my drive has the potential to help not just me, but so many others around me as well. Also, over the last few months as I have done more introspection, I have come to understand that focusing on my abilities is a much better way to live rather than focusing on the ways that I am limited on a daily basis. Though that may sound obvious, I can’t tell you how easy it is to slip into the hole of self-pity. Even though for my entire life I have never wanted to accept pity from others, I place so much pity on myself through my own thoughts and actions. Maybe that has to do with my low self-esteem or something else. However, I have a gut feeling that this new person in my life has the ability to change many of the negative outlooks that I’ve had towards myself for so long.

Though I may say that I have a physical disability on a regular basis, maybe I’m focusing on the wrong things. Maybe I should be focusing on the things that I’m able to do rather than those that I can’t. I know from personal experience that this is so much easier said than done. However, when a new person has come into my life who thinks so highly of me, I owe it to both of us to at least try.

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.

How Do You Deal With Criticism, Writer’s Block And Burnout?

2 May

This past Friday, I met up with one of my writing mentors, Mike, that I hadn’t seen in over 2 years. It was great to see him, and we had a great hour and a half conversation about writing, life, struggles, etc. Since Mike is one of those people who is a writer himself and will tell me the honest truth, sometimes I’m a bit hesitant to share what I’ve written with him.

I have yet to share any part of my book with him because I feel like I’m still in the early stage of writing my memoir. I only started writing at the end of January, and I’ve only written about 12 pages (which I’m not exactly proud of. However, I was dealing with schoolwork up until a little less than a week ago, so what can you do?). Though I’ve only written 12 pages, at this point, I’m still very close to those 12 pages of my life, my heart, and ultimately, my soul. Those 12 pages are memories that I’ve pulled directly from my heart and written down. They aren’t changed in any way. They are as close to the actual truth that I have been able to get (since I’ve realized that I’ve blocked out a good chunk of memories due to their degree of pain). Deep down, I’m not ready to share anything yet. I still feel so emotionally close to what I’ve written so far. I mean, it’s my life. It’s what I felt, not just physically, but emotionally too. How can I turn it over to someone to critique just yet? I understand that dealing with criticism is a huge part of being a writer. I also understand that I’m going to get good and bad criticism, and it’s important to focus on the good criticism since that is the advice that will propel me forward. However, I just feel like it’s too soon. Does that make sense?

Now that I’m done with academics until the fall semester (or until I study abroad in Ireland in June), I have the time to sit down with my memoir and try to sort through as many memories as I can that I have yet to write down. However, at this point, I’m just not sure where to go. I sit down to write, and nothing comes out. I think it’s primarily because I’m not in the right mindset for the memories to surface. The things that I want to share aren’t particularly happy, so sitting down to write when I’m in a relatively cheerful mood doesn’t get me anywhere. Though I understand that the writing process isn’t something that occurs overnight, it’s hard to wait when I just want to finally get all the painful memories out. They’ve been buried inside for so long. We all have to face our demons eventually. I may as well start now.

When I talked with Mike on Friday, he made the comment that my memoir is something that I shouldn’t force, and since it is such a delicate topic for me, it’s something that I should try to not get too frustrated over. However, since the process of writing is frustrating anyway, some frustration is normal. I think the best advice Mike gave me was to start another writing project (as well as working on my memoir). He pointed out that since my memoir is such an emotionally heavy project, it’d be good to work on something light on the side. Whether it’s poetry or a short story, working on another project is good when I’m stuck on my memoir. Mike said “Even if you write a short story about bunnies, you’re writing. That’s all that matters.” Mike has made a point to tell me that writing every day is an important part of writing. Even though I’ve seen the benefits of that (through this blog, mainly), I guess I didn’t consider starting another writing project.

I didn’t consider starting to write something other than my memoir because my memoir was taking up so much of my emotional energy. However, now that I take a second look at it, I guess that’s why people take on multiple writing projects….to give their mind a break from focusing on the same writing project day in and day out. I know that since I’ve started my memoir, there have been days that I just don’t feel like working on it. However, in the back of my mind, I know that I’ve got to work on something if I want my writing spark to stay alive. There have been previous times in my life when I’ve taken breaks from writing, but not just a break from a particular writing project, but a break from writing altogether. Even though in those instances I’ve eventually returned to writing, the breaks from writing have made it even harder to get back into the swing of things.

So, moral of the story: Write every day (no matter what), don’t let a certain writing project burn you out (start something else to keep your writing juices flowing, while also allowing yourself to have a break from the first writing project), and don’t give up (I know writing is frustrating, but for the few of us who love it, writing is our passion, our love, and the only way we can accurately portray ourselves).

Are you ever hesitant to share something you’ve written because you’re too emotionally close to it? How do you deal with criticism? Would you rather focus on one writing project at a time or split your time between two different writing projects and why? I’d love feedback from you fellow writers! 

It’s (almost) summer!

26 Apr

Well, I’m officially done with finals and moved out of my dorm. I’ve just got a short paper due on Monday that I’ll get done this weekend. Even though I’m very happy to be done and have the stress melt away, it was sad saying goodbye to my friends (especially 2 of my friends who are exchange students from England). I have loved my first year at UNCA (but second year of college). It’s been so amazing.

I’ve made some of the most incredible friends….ya know, those kind of people who you know you’re going to be friends with forever. It is such a great feeling, and I’m so happy that I got the opportunity to find a place where I belong. I know it takes some people a while to find that special place, while others seem to just be thrown into it…ya know, the people who just love a place from the start. That’s how it was when I visited Asheville for the second time though. I knew that it just fit me so much better. I was nervous as usual, but everyone gets nervous when it comes to new experiences.

Anyway, even though I won’t be technically on summer vacation until I write this last paper, I am eager to do lots of pleasure reading and have the chance to enjoy living in the mountains and not being bothered with schoolwork. It’ll be such a great change (at least for a little bit). Tomorrow I’m heading to Columbia to talk to one of my previous physical therapist’s graduate physical therapy classes about how things have been for me having CP. Though I have gotten better at talking openly about my CP over the past few months, the thought of standing in front of a class of graduate students and talking about my life is a little scary. I’m not exactly sure what I’ll say. However, I am pretty sure that Meredith (my previous physical therapist) will try to make it as easy on me as she can. However, that doesn’t take away from the fact that I’ll be standing in front of students talking about myself.

Though CP is a huge part of my life and I do want to share my story with the world, I’ve never really liked talking about myself too much. I just never want to take away from the possible things the other person I’m speaking with may be able to teach me (in regards to their own life). Friendship, and communication in general, is a two-way street, and I think many people forget that. Anyway, tomorrow will be interesting to say the least. However, I’m excited to hear what the students have to ask me and to hear what they are currently learning about. Since I had 15 years of PT, I feel like a pro to the terminology when it comes to comparing my knowledge to someone who has no background/experience with PT. However, it’ll be interesting to see what the PT students know in comparison to my own knowledge. After all, it’s never considered a bad day when you have the opportunity to learn something new.