Tag Archives: Spasms

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.

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To Grace.

15 Apr

Grace,

I’ve been thinking about you a lot today. Even though I won’t be able to spend time writing my book until this semester is over in 2 weeks, I’ve been thinking about all the things that I want to tell you…all the things I want you (and other kids with CP) to realize. But at 19, I don’t know what they all are. I’m still learning a good many of them myself.

The truth is, I’m scared. I’m scared of how my CP is going to affect me as I get older. It’s limiting now, but I’m afraid of how it’ll limit me further on down the road. At 19, my back pain is what bothers me the most. Sometimes I have to completely stop in my tracks when my back spasms. It’s different from the spasms that I had in my legs after all of my surgeries. It’s not as jerky as the spasms were in my legs, but it still hurts enough to cause to me stop, place my hand on my lower back, and try to breathe through the pain. I’m afraid this pain will only get worse, and that scares me. There is so much I want to do in my lifetime. I want to travel, be a counselor, write more books, have a family….all of it. Granted, most of that is a ways away, but at this point I can’t tell myself that it’s not a possibility. I just can’t.

Even though I know I will cross the hurdles when I come to them, it’s no less scary. I know that you know this. However, ever since I’ve known you, I’ve never seen fear in your eyes. I don’t know if, like me, you’ve placed that fear in a box in the back of your mind, but either way, I sit and wonder what you’re thinking, what you’re feeling. Even though you’re 11, I’ve wanted to sit with you and talk to you about how you feel about having CP. But honestly, I don’t know how I would phrase the question, and I don’t know if I could bear to hear the answer. I don’t even know if I’d be able to get the question out fully before I started crying. If you sat and told me that you’re scared and it hurts and you don’t understand why you’re different and how you wish you could be like everyone else, I’d cry. Not because I’d feel sorry for you, but because I’d be able to say that I know exactly how you feel. I still feel some of those emotions. Not always, but they creep up every now and then.

I don’t doubt that you’d say something about how you’ve stayed strong through your faith and through God. Though I am happy that you have your belief in God to turn to, I don’t have that. Not because I can’t have it, but because I don’t want it. It took me a long time to figure out why. I knew there was a reason that I didn’t believe in God, but I just couldn’t place my finger on it. After some insight from my best friend Skidmore, I realized that it’s because I don’t see how someone (God) could allow me to face so much emotional and physical pain at such a young age. I’ve been enduring struggles ever since I was born, and I can’t “praise” someone who is okay causing me so much physical and emotional pain. I went through phases where I went to church, but then I just realized that I wasn’t getting anything out of it. However, I know that you get so much out of your faith, and I’m glad. Hang on to that. I get that kind of strength through my own writing, and it’s a strength I have rediscovered over the past five months. And honestly, it has brought me so far. I have never been able to talk as openly about my CP as I have in the last five months.

Last month, during a discussion I had with my uncle and his girlfriend, I described myself as a firecracker. At the time, I didn’t really understand why I made the connection between myself and a firecracker, but now it makes perfect sense. When you light a firecracker, it has to build up lots of pressure before the beauty can be released. I feel like this describes our situation so well, Grace. We have to endure all these struggles (pressure) before we can reach the point of recognizing our inner strength and true passion in life. I want you to know that I love you, and I love the gorgeous smile that you give me whenever you see me. Even though my heart aches when I see you struggle or when I realize all the hardships that you have yet to face, I also know that it’s something you have to face on your own. However, I only hope that one day my words can help you as you have helped me.

I remember one day when I came over to watch you while your Mom took David to Columbia, and you wanted to go upstairs to play on the computer. While I had been there, I was silently hoping that you would want to stay downstairs, because I had no idea how I was going to help you if you wanted to go upstairs. Like me, you have trouble with stairs. However, I normally use my upper body strength as my main support, but since you don’t have that, you’ve got to use your legs as much as you can (which leads to needing help with balance). You told me that I needed to get behind you to make sure you didn’t fall, but as you said this, I laughed because I could picture me trying to keep you from falling and then hitting the ground myself. I knew I wouldn’t be able to fully support you because I needed one hand in order to get up the stairs myself. Eventually, due to you practically crawling up the steps, we both made it without falling. I was so relieved. I had been so worried about falling myself, and the thought of you falling with me was just too much to handle.

Through that experience though, you looked up to me. Since I was older, even though we both were limited, I had to be the one to help you. However, realizing that I couldn’t do much due to my own limitations hurt. I wanted to help you so much, but I just couldn’t. I think writing this book is my way of helping you in the only way that I know how. I’ve gained so much insight and strength since starting this book, and I want you to know one day that you have that same strength within you. We’ve both faced so much, Grace…way more than people our own age have faced yet. And even though that really sucks, it’s also kind of cool because it means that when people we know get to the point where they are scared or in pain, we can say that we understand. We can say that even though things hurt a lot now, in time they will be released, just like a firecracker on the Fourth of July.

Keep on smiling.

Love,

Amelia

Photo Friday: Blue Ridge Sunset.

23 Mar

“Be not the slave of your own past – plunge into the sublime seas, dive deep, and swim far, so you shall come back with new self-respect, with new power, and with an advanced experience that shall explain and overlook the old.” -Ralph Waldo Emerson

As most of you know, I’m in the process of writing a book. However, I’ve been taking a break from my writing for a while. I feel like I need to catch my breath. It’s been a nice way to focus on the people in my life that I love, while also giving me time to reflect on myself as well as the beauty that’s around me. Recently though, my back has caused me a good bit of pain. There have been multiple times in the past few days that I’ve been walking and I’ve come to a complete stop due to the back spasms that come out of nowhere. It’s almost as if the breath is knocked out of me. Because of this recent back pain, though it has been extremely unpleasant, it has given me a jumping off point for some descriptions that I’ve been wanting to include in my book.

Certain pain that not everyone has felt is really hard to explain. I don’t doubt that at some point everyone has had some sort of spasm, but it’s nothing like the intense spasms I had in my legs after surgeries though. But the thing is, I want people to be able to understand. I want people to be able to try to envision the degree of pain that I felt. It’s just such a hard thing to describe. Pain. We’ve all felt it. It can be dull pain, sharp pain or any one of the grey areas in between those extremes. But my spasms were neither dull nor sharp. They’re quick, fast, alarming. It’s like if you tried to keep your arm straight for as long as possible and then all of a sudden you bent it really fast. Multiply that by a really huge number, and you’ve got the spasms that I’ve felt in my legs. Even with that, I don’t know how to describe them in a way that relates to everyone. I just know what I felt.

The unfortunate part about writing about all this pain is that it happened so long ago. And since it was a very painful time for me, I have no doubt that I blocked out some of the really small details of the degree of the pain. I wish I knew the exact words to describe the pain, but I just don’t. The words aren’t coming. All I remember during all those spasms are the screams that I let out. I screamed so loud. It was my release. Growing up, doctors and physical therapists told me that I had quite a voice for how loud and often that I screamed. I also have an incredibly strong grip in terms of my hands. I feel like the screams and the hand strength combined makes a lot of sense. When the spasms took over, I needed any sort of way to feel in control. Though I hardly ever did, I screamed out the pain. I held the pain in my hands as my knuckles would go white due to grabbing onto a mat or the arms of a wheelchair.

Though my CP has made me into a much stronger person, the pain and fear that I faced was overwhelming. I’d never wish it on anyone, no matter how much I dislike them.