Tag Archives: Childhood Memories

Finding Determination Through Fear.

19 Oct

A few days ago I was talking with a friend of mine, and he asked me to explain my absolute worst fear in life. Though some classic answers popped into my head, like ending up alone and losing the people I love, I knew my absolute worst fear. I tried to say it, but couldn’t. I felt like I was about to cry. However, after a period of silence stretched over us like a blanket, I finally spoke.

“I’m afraid of the day when I’ll no longer be able to walk.”

I spent my entire childhood learning to walk so I could be as independent as possible, despite my Cerebral Palsy. Before my intense operations, I learned to walk in my own way, my knees knocking together as I put one foot in front of the other. During the years I spent on a t-ball team, I loved the feeling of running to first base. Even though I typically got out before making it to first base, I ran with all my heart just like everyone else on my team. I ran in my own way, but it never stopped me from trying.

After my first operation at the age of 10, I had to completely relearn to walk after having my femurs straightened out and kept in place with rods. One year later, when I got the hardware removed that was placed during my first operation, I had to relearn to walk yet again. See, not walking was never even an option for me. I wanted to be like the other kids my age, and to do that, I had to be able to walk. I had to be as normal as I possibly could. Even when I was faced with physical pain that made me want to curl into myself and give up all together, I kept going. Every day, I literally walked towards my own independence, one step at a time.

Because I spent so much of my life struggling, and ultimately succeeding, to walk, the thought of reaching the day when I’ll no longer be able to walk is completely terrifying. In so many ways, when I reach that day, it will feel like a kind of giving up. Though I plan to walk for as many more years as I can, I am scared of the day when the pain will just be too much, when walking will be putting too much strain on my body. It’s especially frightening because I know how much physical pain I’m in on a daily basis currently. The realization that I am in so much physical pain and I’m only 21 is terrifying. Trying to imagine my level of pain when I reach age 30 is nearly impossible.

That is one great thing about fear though. It has the ability to help us find the determination and strength we didn’t know we had. Yes, my worst fear is seeing the day when I will no longer be able to walk. However, I’m not there yet. I am a long way off from that day. Today, I am able to walk and do the things I love, despite being in pain. Today, I am able to push through the pain, because the result…the view at the top of the mountain…is worth it. The happiness, joy, and pure bliss of the destination weighs so much more than the pain of the journey.

The fear lingers in the back of my mind, the fear of knowing one day I won’t be able to get to the top of Max Patch, my absolute favorite place in the world. However, the fear also gives me the strength and determination I need to continue doing what I love. Yes, one day I may not be able to walk because of the amount of pain I am in. But I’m not there yet. I’ve still got plenty of fight within me.

At the top of Max Patch (October 2013)

At the top of Max Patch (October 2013)

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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.

A conversation with my younger self: Part 2.

1 Jul

Eight months ago, I wrote a blog post titled “A conversation with my younger self.” In this blog post, I talked with my 7-year-old self and tried to tell her the things I imagined she needed to hear at the time. Things like, “You are not alone,” “The pain won’t last forever,” and “I love you.” More recently, I’ve come to the understanding that I need to become closer with my younger self. I need to sit down and talk with her again to find out what she needs. By doing this, I might be able to figure out what it is I need right now. That younger self is a part of me (though she may currently feel very far away), and I think she might need me as much as I need her right now.

I’m standing in front of a hospital room door in a place that is all too familiar: Shriner’s Hospital for Children in Greenville, SC. I spent enough time here as a kid, and the familiar sights and sounds are a tad too close for comfort. However, the distant hum of the air hockey table in the lobby brings a small smile to my face as I remember how, on the good days, I played as many games of air hockey as I could before becoming too tired.

Nurses walk past me bringing various things to other children on this hall. I look at the door I am in front of, knowing I am meant to go inside. I place my ear against the door to try to hear any kind of conversation, but all I hear is crying. I take a deep breath to try to calm my nerves. My younger self is inside that room, and she needs me. Before I can talk myself out of it, I turn the knob and walk in.

Upon entering the room, it appears that all the lights are off. It’s not until I make my way to the far left corner of the room that I see a fiber-optic Christmas tree radiating different splashes of color onto the wall behind it. My younger self is curled up onto her side and watching the colors change. She holds her stuffed hippo tightly against her chest, her arms constricting and relaxing around him as she cries.

“Hey Amelia,” I whisper as I stand at the end of her hospital bed, hoping I don’t startle her.

She looks up, blinking a few times before making the connection, and then turns back towards the red and green lights.

“You told me before that it would be okay,” she says.

I look down at my feet, remembering the first conversation we had in the park when she was 7. I didn’t know how to discuss it then, and even now when she’s 12, I continue to find myself at a loss. How is it possible to discuss a pain so raw and true while at the same time trying to be comforting and reassuring?

“I’m sorry. I didn’t want to scare you,” I tell her.

She glances quickly towards me, and before she turns away, I notice the tears in her eyes. I sigh, knowing her pain so well. I walk around to the side of her bed, pulling up a chair so that I can sit beside her.

“The nightmares are almost as bad as the actual pain, and then the spasms wake me up, and it’s like I’m living the nightmare,” she says.

“I know it’s scary, and I know it hurts. But it’s okay to cry. I’m right here.”

Without thinking, I place my hand on her head, carefully brushing back her curly brown hair so that I can see her face, her blue eyes. As I look into the eyes of my 12-year-old self, I see it all: the pain, the loneliness, the fear…and for a few seconds, I feel every piece of it all over again, even the spasms that seemed to come out of nowhere. I touch my own scars as I remember, and it isn’t until I feel the pressure of her hand wrapping around my wrist that I look up. She’s staring right at me, and her hand is wrapped around my wrist so tightly that I can tell she’s trying to picture the long road ahead of her.

As her eyes move back towards the changing lights on the fiber-optic Christmas tree, I crawl into her hospital bed, allowing her body to curl up against my own. As she holds tightly to my hand and we stare together at the lights changing from red to green to blue, I hug her against me, remembering how much I longed for an older sister who would hold me during those scary and lonely nights of spasms and nightmares.

The pre-surgery nightmare.

4 Jun

For as long as I can remember, I’ve always been a nervous person. Along with those nerves, I was also very scared, especially as a kid. Rather than using the word “fears,” I was simply told by my parents and my doctors that I had a “vivid imagination.”

Because of this vivid imagination, I remember one specific time when my parents waited a while before they told me about a specific scheduled surgery. I understand now that they didn’t want to alert me to it too far in advance because they knew I’d essentially be a nervous wreck right up until I had to go in for surgery. Though I can understand this now and I know it was a protective measure, I didn’t see it that way when it happened. I remember the night my parents sat me down to tell me about a surgery that would be occurring in about a month. I couldn’t exactly comprehend at first that my parents had waited to tell me, but once I did I immediately started to worry. Not long after that moment, the dreams I would always have leading up to a big operation started. The most common, of course, was the dream in which I woke up during surgery.

Due to my “vivid imagination,” my dreams were exceptionally vivid. In my dream, I was lying on the operating table. My eyes were open, and I was seeing everything. The doctors had the femur of my left leg in their hands, and they were twisting it to the left in order to straighten it out. Though I couldn’t feel any pain in the dream, I could imagine it, which was almost as bad. I looked at the doctor’s gloves, which were covered in blood, my blood. In a room as white as the operating room, the red seemed out of place. And yet, there it was. On the doctor’s hands was the blood that ran through my very veins. As I watched the doctors attempt to “fix” what was “not normal,” I tried to scream out. My mouth opened to make any kind of sound, but nothing happened. I tried to move. I focused so hard on trying to simply raise my right hand off the table, but it was too heavy. The doctors had to know I was awake. If they knew, they’d stop. If they knew, it would all be over. I just needed to do something to get their attention, but they were so focused on my legs. They didn’t even glance up towards my face, not even once, to see the fear and the anguish that was mirrored in my eyes. I wanted nothing more than to get as far away from that room as possible. I wanted to get away from the dead quiet that enveloped me like a blanket that was too heavy, practically suffocating me. The moment I closed my eyes to escape the horror I was seeing, I woke up.

When I woke up from this dream, I felt like I could barely breathe. Without even giving it a second thought, I yanked back the covers to look at my legs. I touched them to make sure they were still intact, still closed up tight. I looked on my legs, my hands, and my sheets for the blood. The blood that had been so incredibly red, so out of place in that white room. With my sweaty palms resting on my knees, my emotions took over. I cried out, knowing that tears couldn’t do this type of fear justice. I rocked back and forth, holding the stuffed teddy bear that was tucked into the bed beside me, and knowing as I started to shake that the tears were coming. When my body finally allowed me to cry, I curled up on my side, hugging the stuffed teddy bear to my chest like a shield, and let my tears speak for me. After the immediate emotion passed and I was curled up into the tightest ball I could form, I began to hum. I hummed the lullaby that my dad so often sung to me when he’d rock me in his mother’s rocking chair on the nights I couldn’t sleep. Eventually, sleep tugged at me again, and I opened my eyes for a pleading moment as I looked into the darkness, knowing the dream was waiting for me.

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. 🙂

New traditions are bittersweet.

23 Dec

Though I love that my parents moved up to NC in May of this year and are now only a 45-minute drive away from me, the “big move” involved selling the house I grew up in until I was 16 years old. Though I was ready to get out of my small hometown as soon as the opportunity presented itself, I loved growing up in the house that I did, and I am very fortunate to have been provided with a house that was full of love, comfort, books, and many memories.

Every single holiday memory I have took place in that house, and this year will be the first time I will be making new traditions in a different house. I’m happy with how things are now, of course. I love my parents’ current house more than my childhood home in SC, but my childhood home holds every single memory of my life up until the age of 16. Decorating the Christmas tree with my mom and getting nostalgic when pulling out the hand-made ornaments from when I was 5 and 6, making Christmas cookies in the kitchen, and putting up my own little fiber-optic Christmas tree (which came into the picture many years ago when I spent the holidays in Shriner’s Hospital for Kids and wanted something to make it feel more like Christmas in my hospital room). Even though the majority of our holiday “traditions,” or just how Christmas Day would pan out, are easy to duplicate in a different house, I think the kicker is also the realization that we will be opening presents and stockings in a different house from now on. The Christmas tree is up against a wall of windows rather than being set in a corner with two couches nestled around it. Since we have a wood stove, there is no fireplace to hang our stockings, and for the very first time, we will only have 5 stockings as opposed to 6 (since we lost Roxy, one of our springer spaniels, this year). Despite that sadness, Hoss, Roxy’s son, will be getting plenty of treats and as much love and attention as we can possibly show him. Needless to say, he’ll definitely be a happy camper on Christmas morning.

I don’t doubt that this Christmas will be just as special as previous holidays. However, I know that for me, it’ll be an emotional adjustment. I know that this year when I wake up on Christmas morning, I’ll be picturing the tree nestled in a corner…stockings hung up on the fireplace…and Hoss and Roxy sitting around my parents, my brother and I as we open stockings and gifts in our pajamas. And maybe, for just a few seconds, I’ll feel a bit sad about not getting to experience another Christmas in my childhood home, but then I will be sure to understand how fortunate I am to even have the opportunity to celebrate the holidays with my family around me.

Mirrored in Truth & Beauty.

5 Nov

Last night, I started reading Truth & Beauty by Anne Patchett, which is a memoir of Anne Patchett’s friendship with troubled author and poet, Lucy Grealy. Here is a synopsis according to GoodReads:

Ann Patchett and the late Lucy Grealy met in college in 1981, and, after enrolling in the Iowa Writers’ Workshop, began a friendship that would be as defining to both of their lives as their work. In Grealy’s critically acclaimed memoir, “Autobiography of a Face,” she wrote about losing part of her jaw to childhood cancer, years of chemotherapy and radiation, and endless reconstructive surgeries. In “Truth & Beauty,” the story isn’t Lucy’s life or Ann’s life, but the parts of their lives they shared. This is a portrait of unwavering commitment that spans twenty years, from the long winters of the Midwest, to surgical wards, to book parties in New York. Through love, fame, drugs, and despair, this is what it means to be part of two lives that are intertwined . . . and what happens when one is left behind.

This is a tender, brutal book about loving the person we cannot save. It is about loyalty, and being lifted up by the sheer effervescence of someone who knew how to live life to the fullest.

Since starting this book, I have seen myself in Lucy Grealy. Though I have not faced what she went through, the loneliness, fear, and desire to belong are all feelings that I have known all too well. Lucy’s words throughout the novel (seen especially in the letters she writes to Ann), are heartbreaking and brutally honest, but in more than one point in the book, I have felt like the words have been taken from my own soul. Even though this is definitely not the first time that I have seen myself mirrored in the emotions of someone else, I feel like this is one of the few times that it’s been so spot on. Throughout the book, Lucy exhibits numerous times when she is down on herself due to her situation. However, that being said, she is a poet, and writing is the way that she comes back to herself. Writing and her friendship with Ann are what allow her to come back to her reality with gusto. Though I am only about halfway through the book at this point, I have found myself, on more than one occasion, clutching the book almost like a life-line, holding it close to my heart and whispering words from the novel that seem to apply to my own life.

“Writing is a job, a talent, but it’s also the place to go in your head. It is the imaginary friend you drink your tea with in the afternoon.”

When I came across the above quote, I smiled. I smiled with the realization that during certain times in my life, I too have viewed writing as a friend, as the friend who is always there, day or night, waiting to welcome you home with open arms and a carton of ice cream. Yes, the ice cream addition was my own tid bit, but it’s what writing has been for me for so long: the one thing that I can come back to, again and again, like a long-lost friend that you never seem to lose touch with no matter how much time has passed. A friend with whom you can pick up right where you left off, as if you saw them just yesterday and not years ago. Thankfully, I have had the pleasure of having more than one friend like that in my life, and it is one of the best feelings I have come to find in this life. Sure, there are other things that come close to that kind of magic, but they aren’t moments that are also full of deep conversations that last into the early hours of the morning or moments of laughing until your stomach hurts.

“That is one thing I’ve learned, that it is possible to really understand things at certain points, and not be able to retain them, to be in utter confusion just a short while later. I used to think that once you really knew a thing, its truth would shine on forever. Now it’s pretty obvious to me that more often than not the batteries fade, and sometimes what you knew even goes out with a bang when you try to call on it, just like a lightbulb cracking off when you throw the switch.”

Truth & Beauty is full of more honesty than I can only hope to achieve one day with my own memoir. It’s not even just honesty that causes you to pause and think, That’s got to be truth. Those feelings are so raw that the only place they could have come is from the deepest and most authentic part of the soul. It’s more than that, if at all possible. It’s sitting on the kitchen floor with a cup of coffee in one hand and the book in the other, staring down at the page and thinking, I can only hope that one day I am as in touch with the deep and dark parts of myself like this author is able to portray. Though I have become incredibly introspective since beginning my memoir in January, I have not reached this level of raw authenticity. To do so, I believe it takes many more months, if not years, of sitting in the dark corners of your memories patiently awaiting the day when they decide to come out into the harsh light of day. You’ve got to sit in the dark and get to know them on a level that’s more true than you’ve ever known. You must sit with them, day and night, until you know their features and ways in which they move through the world. Until your breathing matches their own with such accuracy that you can no longer tell the difference between your breaths and theirs.

“Our friendship was like our writing in some ways. It was the only thing that was interesting about our otherwise dull lives. We were better off when we were together. Together we were a small society of ambition and high ideals. We were tender and patient and kind. We were not like the world at all.”

Though I am lucky to have an incredible best friend, when I read the above passage, the first thing that popped into my head was the level of comfort that can only be achieved through a childhood friend. I thought of a friend that I have known since kindergarten, and the nights that we would lie in my bed and stare up at the ceiling, talking about our futures like they were millions of miles away. The nights that we would hold hands when we got scared in the middle of the night, only to end up burying our faces in pillows a moment later when we were overcome with laughter. We looked at each other then, smiling and breathing heavily once the laughter subsided, not even knowing what we found so funny, and yet realizing that nothing could top the happiness that had been wrapped up in that moment. It enveloped us, that pure bliss, wrapping us up like a quilt that was stitched with every happy memory of our relatively short lives. We knew, no matter what, that we had each other.