Tag Archives: Emotional Pain

Try like hell.

27 Sep

Sometimes I wonder what my life would have been like if I hadn’t been born with Cerebral Palsy. I wonder if I would have decided to be a dancer or maybe an athlete rather than an aspiring psychotherapist and a writer. I wonder if I would have spent my childhood climbing up into trees to read books rather than becoming all too familiar with hospitals, surgeries, and physical therapy. I wonder if I would have had a big group of friends throughout middle school and part of high school rather than coming home every day crying because I had no friends due to my differences. I wonder if I would have spent my time hiking beautiful mountains rather than having to wonder if I’d have the stamina to make it up the next hill.

Earlier this week, my dad said, “Sometimes I wonder what it would have been like if you hadn’t been born with Cerebral Palsy. You could have had a wonderful life. You wouldn’t have had to struggle so much.” Though in the moment I wanted to interject and say I have had a wonderful life, I couldn’t do it. I couldn’t say the words. As soon as I wanted to say something, the memories all came back. I saw myself sitting in a hospital bed screaming out in pain because of the spasms that wouldn’t stop. I saw myself in kindergarten getting my hair pulled every day because I was the one child on the playground who was unable to run away. I saw myself shaking as my classmates pelted me with doge balls during middle school gym class because I couldn’t move away quickly enough. I saw myself crying as a girl I didn’t know imitated the way I was walking and then said she did it because it was a “class assignment.” I see myself at 21, struggling with depression and still not being able to truly accept and be comfortable with having a physical disability.

You would think after 21 years I would be used to the cards I’ve been dealt in this life. The truth is, I’m not. Every day of my life is a challenge. On top of having to convince myself to go to class when my back and my muscles hurt, I have to try to convince myself to get out of bed and face the day even though I’d rather sleep to escape the overwhelming sadness and hopelessness that hovers over me like a dark cloud.

I’m trying to learn to hold on to the good moments, though they are few and far between. The color of the changing leaves during autumn, the few (but true) friends who have been by my side through all of this darkness, a dad who has never given up on me, a smile from a child fighting cancer after completing an art project I taught her. In the darkness of depression, it is very hard to remember those good moments, especially when the bad days outnumber the good. However, I’m trying. It’s all any of us can really do. We try like hell, and hope against all odds that we can kick this life just as hard, if not harder, as it kicks us every single day.

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I’ve returned, and here’s why!

16 Apr

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After over 2 months, I’m back. However, before I go into why I’ve returned, I thought I’d fill you in on what’s been going on in my life recently.

During the months of January, February, and March, things were rough for me physically. I was in more pain than normal, I was falling more than usual, and it was incredibly frightening. I felt like I had slipped back in time. Despite my initial resistance, I contacted a local doctor in Asheville who deals with CP in adults (which, in some ways, seems like some kind of Mecca). However, I was afraid, understandably. I didn’t know if I wanted to hear what the doctor would have to tell me regarding my disability. I didn’t know if he’d mention surgery or botox. I just knew that I wanted answers, but I was scared to know what they truly were.

Due to my anxiety connected with going to this new doctor, I had my parents come with me as moral support, and I knew they’d want to hear what the doctor had to say anyway. What was the verdict, you ask? Baclofin (an anti-spasticity medication to hopefully lessen the increased spasticity) plus regular physical therapy and pool therapy for a period of 6 weeks. Even though I was happy about the Baclofin since I had never taken an anti-spasticity medication and was interested in how it would affect me, I was much less excited about the physical therapy. I remember leaving the doctor’s office that day in a weird haze. Once I got outside, I started to cry. Physical therapy? Again? Wasn’t 15 years enough? I couldn’t even seem to wrap my head around it. I was scared and for good reason. I had more than a lifetime of memories from physical therapy to write multiple books on the subject, and I wasn’t looking forward to returning…at all. However, after talking it through with my parents and numerous friends, I realized that this was ultimately my decision. If I tried the physical therapy again, and I wasn’t getting anything out of it, I could stop…just like that. With that understanding, I made the decision to go ahead with the physical therapy and the pool therapy. After all, I was in a crazy amount of pain. If there was any chance that physical therapy could help, why not give it a try?

My PT evaluation (before I even started back with PT exercises) felt like stepping back in time. I felt like a kid, walking into a place I knew would result in me being in tears in an hour. My anxiety was sky high, and I was terrified. For my entire life, physical therapy was associated with one feeling: pain. I didn’t understand why I had decided to place myself in that environment again…and willingly at that. The fear came back full force when the physical therapist asked me to bend one of my knees back as far as I could. I have always been incredibly hesitant to bend my knees due to a painful experience during my intense physical therapy following one of my major operations. Therefore, the slight mention that the physical therapist may be planning to “try to get those knees to bend” had me terrified. Though when I left that day, the physical therapist assured me that I was in control and they weren’t there to hurt me, I just looked at her. Up until that point, I had never really had the say-so regarding my physical therapy, mainly because my previous experiences with PT occured when I was still a child and the primary goal was to get me up and moving so that I could be as independent as possible.

As the weeks went on, so did the physical therapy and the pool therapy. I also continued to take the Baclofin. I started to like the pool therapy, simply because it was a less intense version of physical therapy. Therefore, I felt like I could actually relax. The first regular PT session following the first evaluation wasn’t enjoyable like the pool therapy though. The exercises I was asked to do gave me flashbacks to previous physical therapy sessions in my past, and it was incredibly overwhelming. At one point. I even started to have an anxiety attack. I couldn’t seem to get the feeling of pain out of my head, though I wasn’t in pain during the present moment. It just felt close. The rest of the day following the PT session in which I had the panic attack was rough. I cried off an on throughout the day, and painful memories from my past PT didn’t seem to want to leave me alone. Though I was incredibly anxious to return to PT following that rough day, I did. I explained how the previous PT session deeply affected me and caused me to be really upset. Thankfully, the physical therapist responded well to my anxiety and told me that she’d find other stretches I could do that wouldn’t cause me so much emotional stress.

Last week, the 6 weeks of physical therapy and pool therapy came to end. Though I was glad that the physical therapy had provided me with some exercises to implement into my current workout, I was happy to be done. I was happy to actually get discharged from physical therapy. I’m also still continuing to take the Baclofin, the anti-spasticity medication. Though I haven’t seen immediate changes, I have noticed that I haven’t fallen in a number of weeks, which is huge since I was falling multiple times a week prior to starting the PT, pool therapy, and Baclofin. So that’s where I am as of now, taking it one day at a time.

However, the main reason I’m back doesn’t have to do with physical therapy or being in pain. I’m back because a week ago I received news that the post I wrote last May for Holstee is going to be included IN A BOOK. Though I’ve been published numerous times before (online and in newspapers), there is something so incredibly about the idea of being published IN A BOOK. The My Life Book is still in its early stages, so I don’t have any information about when the book will be published, but I will definitely keep all of you posted. The interesting part is that when I was informed that my story would be included in the book, the suggestion to edit the article since it has been almost a year since it was published was thrown onto the table. I’m somewhat torn, however. A lot has definitely happened in the last year, and since the article I wrote for Holstee involves talking about how I’m writing my memoir of living with CP, it would make sense to include the struggles I’ve been dealing with most recently. However, I also know that it could be hard to limit all of the explanation to just one article. Decisions, decisions. Either way, things are looking up!

Now, what’s being going on with all of YOU? Two months doesn’t seem like too long, but it’s felt like an eternity. Either way, I am so happy to be back!

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.

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 search for understanding from a disability perspective.

5 Dec

Since I didn’t have someone who understood my pain during my years of intense surgeries and physical therapy for my Cerebral Palsy, I talk a lot now about wanting to be that person for others with CP (or other disabilities) who are going through similar situations. Though I do know that I want to be the understanding ear for those with physical and/or emotional difficulties associated with their disability, it’s only recently that I’ve begun to realize that there still isn’t someone to fill that role within my own life.

Though it is reassuring to know there are so many others who are in similar situations, most of the people I have connected with (mainly through my blog) are in the phases of difficulty I was in many years ago: the intense physical therapy, the surgeries, the nights of crying because all you want to understand is why you have to be different from everyone else. In order to be the CP advocate that I wish to be for others, I’m still looking for an understanding ear, but specifically someone who has already faced the difficulties I’m currently dealing with. However, I’m beginning to realize that finding someone who understands isn’t just hard when you’re a kid. It’s hard at every phase of life, no matter how much you may have progressed from where you were on day 1.

However, it’s also important to make a distinction between someone who wants to understand and someone who can understand. My support group of friends are all people within my life who love me and want to understand the pain and difficulties I have faced and continue to face on a daily basis. However, despite their good intentions regarding every aspect of who I am, none of them fit into the category of being someone who can understand. Though I do not blame them and am still very appreciative of all they do for me, I still want someone who can understand. I want someone who knows exactly what I mean when I’m talking about the pain of post-op physical therapy or how hard it is to simply summon the strength to get out of bed in the morning to continue the daily battle that is associated with living with a physical disability.

Though it may take me a very long time to find someone who can act as a disability role model within my own life, I know the wait will not stop me from being that person for so many others. The recent realization that sharing my own story can help to inspire so many others to keep on going is incredibly special to me. I have seen from my blog posts how much I have helped others who also have CP (and even people who don’t have any kind of disability) to simply keep on going. In so many ways, that is all we can do. Though there many not be too many people who can understand, I will continue to share my story in order to help those who want to understand. It is through those who want to understand that change will come. Since the central part of the search for understanding lies in the need for acceptance, helping those who want to understand is the first step towards achieving some form of acceptance within the current society in which we live.

The Shrine Bowl of 2003.

25 Nov

Ten years ago, as I was riding back from one of my weekly physical therapy sessions with my mom, I received a phone call informing me I had been nominated to be the Shrine Bowl Queen. At the time, I wasn’t sure what being a Shrine Bowl Queen meant, and I didn’t know there was a football game that took place every year in the Carolinas hosted by the Shriners.

As months went by following that first phone call, I received more phone calls informing me I was a finalist and finally that I had been chosen as the Shrine Bowl Queen for the Shrine Bowl of 2003. I didn’t know what to think. I was excited, obviously. However, I was confused as to how I’d been chosen. Apparently, as I later learned, I had been one of the few girls who had been chosen out of the thousands of patients who had been in and out of Shriner’s Hospital for Kids in Greenville, SC, over the past year. Though sometimes it still blows my mind that I was picked out of all the others girls that year, I’m proud. I was chosen because I had stood out. However, for once, I didn’t stand out because of my disability (since the majority of the kids at Shriner’s were disabled too). I stood out because someone saw me as one of the patients at Shriner’s who had faced a lot, but was still able to have a smile on her face and a lively laugh despite the pain.

Being named “the Shrine Bowl Queen” involved attending two required events. The first event was a parade that took place in Myrtle Beach, SC, in which I rode on a float (along with the Shrine Bowl King) to support the Shriners and the Shrine Bowl game that would take place in the Spring. The second event was the Shrine Bowl itself. Though I don’t remember the outcome of the football game, I remember being so incredibly nervous, but also extremely excited. As time passed during the first quarter, I knew the chance to make my appearance was getting closer and closer. Part of being the Shrine Bowl Queen (or King) involves going onto the football field during halftime of the Shrine Bowl to release a dove into the air. During this time, both the king and the queen each receive a trophy with their name engraved as well as a football that is signed by all the Shrine Bowl players of that year. Though I was excited about having the opportunity to walk out onto the field with the Shriners to release a dove, the thought of being in front of so many people gave me huge knots in my stomach. However, despite the nervousness, I knew that I would walk out onto that field. After all, I had been chosen as the Shrine Bowl Queen for the Shrine Bowl of 2003. With all references of having a disability aside, that isn’t an opportunity that you simply walk away from.

I guess you could say that the Shrine Bowl of 2003 was one of the highlights of my time at Shriner’s Hospital for Kids. Though there were definitely some other exciting times that were connected with getting closer and closer to independence, the majority of those memories were layered with months of physical pain. However, the Shrine Bowl of 2003 didn’t include any kind of pain: physical or emotional. It just served as a day which now signifies that I was a patient at Shriner’s Hospital for Children, and I was a prime example of a girl who endured. Though there are definitely numerous moments now in which I’m able to look back on all that I have overcome, being chosen to be the Shrine Bowl Queen of 2003 was evidence that I wasn’t the only one who was able to recognize all that I had endured. Doctors, physical therapists, nurses, and others at Shriner’s who were responsible with making the Shrine Bowl Queen nominations knew it as well. They probably knew it long before I even saw myself as someone who could smile and laugh despite the continued presence of pain in my life.

The top 5 Jodi Picoult quotes to help you change your life.

17 Nov

I absolutely love Jodi Picoult. She’s one of my favorite authors, which is most likely because I love how all her books make me think. I’ve always loved the way Jodi Picoult writes, and she is one of those writers that somehow knows the words that I feel without me having to utter a single word. I’ve never understood it, but it’s a concept that I’ve come across with other writers as well (John Green, Lucy Grealy). Though Jodi Picoult’s words haven’t necessarily changed me, they have helped me realize the aspects of my life that I hope to change.

1. “Maybe who we are isn’t so much about what we do, but rather what we’re capable of when we least expect it.” – from My Sister’s Keeper

This quote, though it’s simple, gives me hope. It is a reminder that yes, we will all make mistakes, but those mistakes shouldn’t be what others constantly focus on. Instead, we should remember the moments that we were strong, courageous, and brave. For instance, people have always told me how strong I am for what I have been through. However, I never know how to respond. I was strong because I had to be. There was no other choice. This quote helps me to see that strength that is within me, even though there are countless times in which I’d prefer to not always have to be the strong one and simply let someone take care of me.

2.“Sometimes to get what you want the most, you have to do what you want the least.” – from My Sister’s Keeper 

For me, this quote relates to the concept of writing my memoir vs what I what to achieve through writing my memoir. I want acceptance in myself, but more than that, I want other kids with disabilities and other kids who also go through horrendous surgeries to know they are not alone. However, to get to the point where I can help other kids like me, I have to do the hardest thing I’ve ever attempted: I have to relive the memories of my childhood so that I can write them down. Though it’s a painful process and sometimes I’m not entirely sure why I keep on writing, I think of the kids that are lying in hospital beds feeling scared and more alone than a widow on Christmas. It’s because of those kids that I keep on trudging through, because once upon a time, I was one of them, and I spent so much time wanting for someone who could understand. And that person never came. So I want to be that person for other kids. I have to be, because feeling like no one understands when you’re going through the most intense physical pain of your life…that’s the worst feeling there is.

3. “You can’t look back – you just have to put the past behind you, and find something better in your future.” – from Salem Falls

This quote has definitely been the kick in the pants when I’ve needed it. I’m naturally one of those people who focuses on the words “what if.” However, reading this quote always helps me to reminder that I just need to look ahead rather than always focusing on what might have been, because keeping my eyes glued to the rear view mirror isn’t going to do me much good. Instead, I need to look ahead and realize that the people who are in my past are there because the things that I’ll find in my future will be so much better.

4. “You might have to lose control before you could find out what you’d been missing.” – from Nineteen Minutes

This quote is similar to saying “Sometimes you have to hit rock bottom to realize what you had.” It’s all about perspective. Sometimes, all we need is a shift in perspective, a chance to look at a situation in a different way in order to focus on what’s really important. I definitely know there have been times where I have lost sight of what’s truly important because I’ve allowed myself to get too bogged down by the petty things that won’t mean much in the long run. By changing my perspective and realizing that focusing on the important things are what really matters, I learn more from the situation, and I’m able to be happier.

5. “Just because fate had thrown another obstacle in my way didn’t mean I had to give up my dreams.” – from Harvesting the Heart

Dreams are a special thing. They give us a purpose, a direction to move towards. I am one of the fortunate people who knows the feeling of being able to live my dream: writing about my own life in order to help other kids who have been through something similar. However, I know that for many people, dreams reside in the distance. They are present, but they are regarded as things that don’t always deserve the right amount of attention because there’s not enough time or money or space. Living a dream isn’t supposed to be easy. You’ve got to work for it, every day. But the feeling you get when you realize you’re living it…when it’s staring you in the face and giving you more joy and purpose than you ever thought possible…that’s a feeling that borders on miraculous.