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.

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.

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.

NaNoWriMo (Day 1): Different kinds of love.

1 Nov

My parents are very different people. I guess you could call them polar opposites in a lot of ways. However, they compliment each other, and I also know that without them being very different, I would have had an even harder time dealing with the struggles related to my Cerebral Palsy throughout my childhood. In connection with my parents being very different, they also have very different ways in which they show love. I like to think that I got lucky and am able to show others how I feel through how each of my parents behaved (and still do behave) towards me regarding love.

My mom has always showed affection through tough love. During my childhood years, I couldn’t understand that this was even a form of love. The toughness hurt. It made me cry. Most days, it made me feel like I wasn’t good enough. Especially concerning the exercises that I had to do in order to get stronger and be more independent, my mom was the pusher. The goal was to get me to be more independent, and in my mind, I felt like that is all she could really see. For much of my life, I didn’t want a tough love mom. I wanted a mom who would show me she loved me in the obvious ways. I wanted a mom who would see me in pain and instantly hug me and rock me, continually telling me that it would all be okay. I wanted a mom who would welcome me into her arms, welcome me into the place that I fit and would always belong. I didn’t understand how my mom could push me to complete all the really painful exercises and not even be phased when the tears began to fall. I didn’t understand why she didn’t tell me she loved me more often. For much of my life, I doubted my mom’s love for me. Since we were often butting heads, I couldn’t allow myself to see the ways in which my mom was showing me love. I just knew that I was in pain, and instead of making it stop, she was making it worse. In my mind, that was so far from love. Though my mom was pushing me so that I could be a more independent person and fight through what was bringing me down, I couldn’t see that. All I knew was that what I did end up doing never seemed to be good enough. As soon as I completed one exercise, using all my strength to push through the really painful parts, there was another exercise to do…and another after that…and another after that. It was a never-ending stream of pain and tears, and at the center was my mom, telling me to bend my knee up just one more time.

My dad was the complete opposite. He has always been incredibly sympathetic and has always showed his love for me in ways that I could relate to. For instance, I remember the first few weeks I was home after my first surgery. Throughout those weeks, I was in an incredible amount of pain, which often made it really difficult for me to sleep at night. Therefore, I’d call out for my dad, and even though it would take some time for him to hear me, eventually he’d come to my room. In those moments, there was nothing he could do to ease my pain except give me some pain medication. However, the ability for him to just sit at my bedside and brush my hair with his fingers was enough. Though I was still hurting, it was obvious that all he wanted to do was take away my pain. I could tell from how he looked at me that it was so hard for him to not be able to do anything. However, in those moments, his love for me was obvious. The simple fact that he just came to sit beside my bed through my tears said so much. Even if he never said anything to me, I could feel the love that was held in those moments.

My dad has always been an incredibly empathetic person, and I know that’s where I get my ability to empathize with others and relate to the pain that other people have felt, though I may have not felt that specific kind of pain myself. Though my dad has always been empathetic, that doesn’t take away the fact that for my entire life, I have longed to have someone to understand my pain. I’ve wanted someone to be able to come up to me and say, “I know exactly how you feel.” However, in a situation such as mine, that’s not an easy thing to find. My dad’s love for me has filled many of the gaps that a person who knew my pain normally would. Though he doesn’t know what my pain has felt like it, he (as well as my mom) lived through it with me. They were with me every day, watching as I went through unimaginable pain that they couldn’t take away no matter how much they longed to do just that. Also, since I’ve always been incredibly close with my dad, he’s grown to understand many of the parts of myself that I don’t show to many people. Since we’re so similar, he probably knows me better than anyone else. In so many different ways, we understand each other, and my ability to be incredibly open and honest with my dad has allowed us to have the kind of parent-child relationship that I know many people wish they could have.

In much of my teenage years, during the times that I was going through intense physical therapy but also beginning to become my own person, I began to doubt my parents’ love for me. Though I have no doubt that my parents had told me they loved me countless times before, I feel like my own low self-esteem impacts the way I imagine others feel towards me. Though that may seem sad, I think it’s something that any of us who are different struggle with. In a childhood that is filled with a great deal of emotional and physical pain, where is the love? How can we feel like others love us if they are pushing us to do things that are incredibly physically painful? Isn’t love supposed to be a warm feeling? Isn’t it supposed to be the kind of emotion that has no boundaries or limits and is able to lift us out of the hardest times in our lives? Doesn’t love conquer all? Regarding my ability to doubt that others love me, I have realized that I have always been one of those people who needs reassurance, which I feel like is another trait I get from my dad. Therefore, even though I have friends and family who may tell me they love me on a regular basis, I often wonder when I will allow myself to believe them. I wonder how long it will take to stop doubting how much they care. I wonder…I wonder…I wonder.

Though my parents showed their love to me in very different ways, they’ve always complimented each other. If I had 2 parents who demonstrated tough love or 2 parents who were incredibly soft, caring and empathetic, I wouldn’t have been able to make it through my struggles. Though sometimes it’s still hard that my parents show love in 2 very different ways, it’s helped me define my own definition of love. It’s also helped me understand that since my parents have two very different personalities, the way they show affection is definition, and that’s just the way it is. However, it’s helped me see that there isn’t just one way to show someone who you care about them or love them. Though I am only 20 and I still have a lot to learn regarding love, I know that the love I have received from my parents has shaped me into how I show my love to other people. Though I don’t solely demonstrate tough love or solely demonstrate softness and empathy, I know that having a mix of the two is probably the best way to be.

[Word count: 1380 of 50,000]

Happy (almost) first birthday, lifeintheblueridges!

31 Oct

Even though today isn’t the “official” one-year birthday of lifeintheblueridges, I will be starting NaNoWriMo tomorrow. Therefore, my post tomorrow will be my writing piece for day one of NaNoWriMo rather than a “Yay lifeintheblueridges is one year old today” post. However, I knew that I couldn’t go full tilt into my first NaNoWriMo experience without celebrating the one-year birthday of this blog.

As well as November 1st being the one-year birthday this blog (in which I have written one blog post every day for an entire year), it is also the celebration of the beginning of my journey to find myself. Yes, that may sound cliché, but it’s true. Since I started my blog, I have become a completely different person. When I first began, I had no idea that my words would act as a gateway into what I strive to do in life: advocate for people with disabilities. I first began acting as an advocate in January of this year when I made the decision to share my own story of living with Cerebral Palsy. Though it was a very spur of the moment decision that was made one evening as I sat in bed thinking back on my life in and out of hospitals and how hard it was not having someone who understood my pain and fear, I knew that it was a decision that would stick. I could feel it.

I am proud to say that 10 months later, the decision has remained strong. More than anything, it has grown. Though I know that part of the growth has to do with the inner strength that I have rediscovered within myself, I also know that it has a lot to do with the support and encouragement that I have received from the blogging community. Before beginning my blog a year ago, I never knew that the blogging community was as close to a home with a strong sense of belonging that I’d ever hope to find. Even though I am sure that there will be other places along the way that will allow me to feel a similar sense of belonging, I know it started here. I have no doubt that as I continue to share my story, I will continue to become more confident in myself. However, I also will be sure to not forget those who helped me first begin to recognize my true self: my parents, my friends, my mentors, and all of you lovely blog followers.

It’s always so crazy to think of how much can happen in a year. When I began this blog one year ago, I didn’t know that this is where it would lead. I didn’t know that I would reach a point where it didn’t scare the hell out of me to talk about my life with Cerebral Palsy. I didn’t know I’d be able to talk about certain memories without crying because I could remember the pain so vividly. Honestly, I didn’t think I’d be able to revisit any of the painful memories at all. For so long, they were stored away. I kept them in the dark recesses of my mind, and I never even considered the possibility of bringing them out into the light. The simple thought of reliving the moments in my life that were filled with so much pain and fear was unimaginable. However, I think all of that began to change when I realized that I had the power to help other kids with disabilities feel less alone by sharing my own story. Truthfully, all of it changed because of Grace.

Grace. The twelve-year-old girl who I know who has Cerebral Palsy. The girl who is facing what I’ve faced, and yet always seems to have the biggest smile on her face. The girl who looks up to me as if I have hung the moon and the stars. And yet, she’s also the girl who has the ability to break my heart since, at the time, I knew I’d never be able to save her from the pain. There was nothing I could do that would result in Grace not having to feel the emotional and physical pain that I have had to face my entire life. However, eventually, I thought of a way I could help Grace. Though it may not be in the way that I wished, I know that I can help Grace (and many others like her) by sharing my own story and bringing to light the pain, fear, loneliness and rejection that I have faced throughout my life. Grace. The girl who I feel like I can completely relate to since we know each other’s pain. The girl who often sends me spiraling back into painful memories that have been long gone and over for many years by simply being present in my life. And yet, I long to help her see that she is not alone, that she is strong, and that she is loved. I long to help her see that she is one of the reasons why I’m writing my memoir. Maybe even the sole reason.