Tag Archives: Hospital

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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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.

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.

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]

The good things about surgery.

24 Oct

What doctors don’t emphasize too much when it comes to surgery is that the actual surgery is the easy part. It’s the intense physical therapy afterwards that kills you. That being said, surgery is still a very scary procedure. Through all 3 of my intense surgeries, I was scared every time. Before each surgery, I had nightmares about waking up during surgery and seeing the doctors putting their hands inside my legs to straighten out my femurs. In my nightmares, I couldn’t speak. I remember screaming as loud as I could to try to alert the doctors that I was awake, but nothing worked. The doctors were too focused on straightening out my crooked femurs to pay attention to the traumatized girl on the operating table. However, thankfully, all of this was a dream. That doesn’t mean that it felt any less real though. I remember countless times when I woke up from this particular nightmare screaming and struggling to look at my legs to make sure they weren’t split open to expose my bones.

Despite the decent amount of fear and uncertainty that accompanied the intense surgeries I had, there were some pluses. First off, before each surgery, I got the autograph of the head surgeon. However, not in the sense that he signed a picture of himself and gave it to me. He signed my legs though. I later learned that he had to sign my legs so that he would be sure to do the correct procedure on the correct patient, and I definitely think that’s important. I didn’t want my femoral derotational osteotomy to be confused with a sex change. However, in my opinion, it’s more fun just to imagine the head surgeon wanting to give me his autograph.

Since the surgeries I had were incredibly intense, I was placed in the ICU following each operation. Though the groggy feeling and getting sick from anesthesia wasn’t fun at all, I had an epidural. Therefore, the pain wasn’t nearly as bad as it would be once the epidural was removed. Also, even though I slept a lot while I was in the ICU, when I was awake and finally ready for food (or when I could enjoy it without getting sick), I got to have as much ice cream and chicken noodle soup as a wanted. I even remember one particular time when I got my dad to go to the Chick-fil-A that was in another part of the hospital so that I could have some chicken nuggets and waffle fries. Though Chick-fil-A is normally incredibly yummy anyway, it was 100 times better after a huge operation. Trust me.

Most people don’t really think of presents when they think of surgery. However, they are connected, especially when you have your operations in a children’s hospital like I did. When I was younger (before all of my surgeries), I never quite understood why people received flowers and other gifts when they were in the hospital because, to me, the flowers didn’t really do much when they didn’t also include sunshine, birds, blue skies and everything else that’s connected with the outdoors. However, when I was in the hospital following my surgeries, the flowers were a comfort. Though it was hard to accept that I couldn’t just go sit outside and look up at the clouds, the flowers were the closest thing I had to being outside, and at that point, I’d take anything I could get. However, besides flowers, I also received tons of “Get Well Soon” cards and all sorts of presents from family, friends, friends of my family and pretty much anyone else who cared about me and wanted me to know that they were thinking of me. Though I don’t remember specific flowers or specific cards that I received, I do remember getting a stuffed animal hippo from my horseback riding teacher, Miss Mary. Though I ended up accumulating many stuffed animals throughout the time I spent at Shriner’s, my hippo is the one that is still very close to my heart since I got him after my very first surgery. He’s been with me through it all (including college), and I know that it will stay that way for quite a while.

Though I don’t recall having any incredibly good-looking doctors like the “doctors” on Grey’s Anatomy, I do remember Ben, one of the physical therapists at Shriner’s that I had a huge crush on. He had red hair, freckles and the cutest smile I’ve ever seen. Even though he wasn’t my physical therapist for an extended period of time, he did spend a few months with me while my regular physical therapist, Beth, was on maternity leave. Even now, it seemed close to perfect that part of my time with Ben coincided with Valentine’s Day. Even in the hospital when you’re feeling all kids of emotional and physical pain, it’s possible to have a crush. Trust me, I proved that. As you can imagine, when Ben gave me a heart-shaped box of chocolates on Valentine’s Day, I was over the moon. I think I may have even squealed a little bit when he handed me the box of chocolates. After all, it was one of the first times in my life that someone other than my dad was my valentine. Although, since I never had Ben as my valentine a second time, I think it was a good decision to stick to having my dad as my valentine from then on.

Mr. Tim and braces.

23 Aug

For much of my life when I was little, I had to wear AFOs, which are basically braces that I wore on my feet to keep them from turning inwards (before my first surgery, my femurs were turned inwards). Getting new AFOs had its ups and downs. I had to get casted for new braces every time I grew, and most of the time it wasn’t something I was looking forward to. New braces meant fresh “hot spots” on my feet until I could get used to the braces and “break them in” in a sense. Even though we used padding to try to ease the hot spots, they weren’t comfortable. When any body part has to be held in a position that it’s not naturally in, it’s not exactly fun. The one thing that did make me smile was getting to pick my color.

Picking a color for braces is a lot like picking a color for a cast after you’ve broken your arm (which I’ve never done, thankfully). You want something bright or something that makes you smile when you see it rather than frown. I know that many times I chose hot pink and bright purple. However, I remember one special time when I had to get new braces when I was at Shriner’s Hospital. Instead of going for one of my typical bright colors, I picked the bright red that had monkeys on it. I was so excited to be able to look down and see animals. It almost made the fresh “hot spots” worth it. Almost.

The best thing about getting new braces was Mr. Tim. I can see his face in my mind even now. He was the orthopedic doctor that I went to when I needed new braces, and seeing the way he smiled every time he saw me almost made the process of getting new braces bearable. I remember the process so clearly. Mr. Tim started by taking an ace bandage roll and soaking it in what I think was plaster of paris. Mr. Tim then wrapped the ace bandage around my foot and waited a few minutes for it to harden. The next part, the part that always made me a little anxious, was when Mr. Tim had to use a saw to remove the brace mold. Even though I knew that Mr. Tim wouldn’t cut me because I knew how many brace molds he had made, the sound of the saw wasn’t pleasant…and it could make you nervous even if you didn’t think you were one bit scared.

Even though I’m grateful that I don’t have to wear braces on my feet anymore, I remember coming across an old pair of braces when my mom and I were cleaning out my closet a few months ago. It felt good to be able to not even have to hesitate before I told my mom to get rid of the braces, but for just a second, I thought of Mr. Tim and the smile that seemed to brighten even the really hard days.

Hospitals: Where Time Stops And Yet The Weeks Run Together.

8 Aug

Anyone who has ever had a very intense surgery will tell you that the actual surgery is the easy part. It’s the intense physical therapy sessions that you have twice a day that bring all of the pain, a pain unlike anything you’ve ever known before.

The physical therapy room of Shriner’s Hospital is a room that is very detailed in my mind. First of all, there are 2 doors on either side of a window that lead into the therapy room. If you enter through the door on your right, you’ll see the physical therapists’ desks to your left, a few raised mats to your right, a small set of stairs straight ahead, and a set of parallel bars to the left of the stairs. Past the stairs and the parallel bars and the mats, there’s a relatively big window. Beyond the window is a patio area that has a few benches and some trees, a scene that was probably designed to look relaxing and bring in as much sunshine as possible. A scene that all of the PT patients look at with longing when they are able to catch a glimpse, wishing for just one moment that they could be on the other side of that window.

I went out onto that patio area once from what I can remember. I remember smiling because it was the first time in months that I was able to feel the sunshine on my face. Hospitals give the impression of being cold, dreary, and plain. Shriner’s wasn’t like that. It was colorful, had a game area for kids to play, and had tons of windows that gave you a glimpse into what was happening outside. However, they were still windows. They still acted as a barrier between two very different worlds. Even though Shriner’s didn’t give off the typical hospital impression of being gloomy and full of sick people, it’s true that you lose track of the days when you’re in a hospital. However, in my case, I seemed to lose track of the seasons more than the days. If it wasn’t for the big windows, I would never know when the leaves began to change in the fall or when the flowers began to bloom in the spring. I’d never know that the world was continuing on without me…while I was inside a physical therapy room wanting nothing more than to catch a fallen autumn leaf in my hand or feel the rain on my face.

All the time that I spent in Shriner’s after my surgeries to have intense physical therapy is pretty much a blur. Though I remember specific memories, the time frame I was there is skewed. I can’t remember how long I had intense PT after my first surgery. I can’t remember when I was finally able to go home after that chunk of therapy. But I can remember who my therapist was. I can remember which exercises I hated the most, and I can remember the moments when the only time that I could breathe a sigh of relief was in between the spasms in my legs, the spasms that made it seem as if my legs resembled a rubber band that was being pulled right up until the moment that it almost popped. Though I may not remember days, months, or what time of year it was, I remember specific moments of pain. I remember realizing that there’s only so much emotion that can be held in tears, and there’s only so many times you can scream before the pain is so extreme that it silences everything, even your voice.