Tag Archives: Fears

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.

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Why Jodi Picoult Deserves Praise From The Special Needs Community.

9 Feb

One of my favorite authors is Jodi Picoult. I’ve read all of her novels, and I saw her speak in March of 2010 regarding the release of House Rules (and it was by far one of the best nights of my life so far). However, I love Jodi Picoult for more reasons than she’s a great author (I quote her books more than any other author), every one of her books has taught me something, and the fact that she addresses touchy subjects. I also love her because she responds to emails from her fans. She’s said in numerous interviews that she’s the one responding, rather than one of her assistants.

In Jodi’s 2009 novel, Handle With Care, the main character, Willow O’Keefe, has OI, or osteogenesis imperfecta (a genetic disorder characterized by brittle bones that break easily). Even though Jodi discussed a disability that is very different from Cerebral Palsy, I still felt like I was able to relate to much of what Jodi discussed in Handle With Care about what it means to be different and what it’s like to feel so much physical pain on a daily basis. It was a special moment when I realized that my all-time favorite author was writing about certain feelings that I have experienced on a daily basis: the desire to find a place I belong in a society that’s not fully accepting to those who are “different.”

In March of 2009, I wrote the following email to Jodi:

Dear Jodi,

I just recently read the synopsis of your new book, Handle With Care,
and I am very excited to begin it! However, as I was reading your
conversation about Handle with Care that is featured our your website,
something caught my eye. Even though I don’t have OI, I have another
disability, Cerebral Palsy, which has affected my life since I was
young. Personally, I just want to let you know how deeply you touch my
heart with each of your books. You do a wonderful job of portraying
how it truly is for those of us who are different. I can sympathize with the kids you
interviewed that have OI. Even though it may be extremely
rough for them, they are just like any normal kid, and nothing warms
their heart more than when they are actually treated like one.
I am extremely thankful if you actually took the time to read this.
You and your books have made a significant impact on my life. I hope
to one day meet you and let you know face to face how much you have
truly helped me.
Thanks again,
-Amelia

This was her response:

Amelia, kids like you are MY heroes.  I hope you like the book and hope it rings true!
Jodi Picoult

So far, Jodi has discussed disabilities such as OI and Asperger’s (House Rules), and I applaud her for interviewing kids who are faced with the disabilities she has covered because those of us who have lived through the experiences our disability presents are the only people who know what it’s really like. Therefore, Jodi Picoult deserves a crazy about of praise and support from the special needs community for giving a voice to the issues that may have not had much prior awareness or increasing the level of awareness to a more diverse population. Though I still silently hope that one day Jodi will write a novel that has a character with Cerebral Palsy in it, I already have gained so much from the fact that she has written about many of the emotions I feel on a daily basis in regards to my disability.

The power of a calling.

13 Dec

“The more scared we are of a work or calling, the more sure we can be that we have to do it.”

To Grace (Part 5): Gaining strength in little fears.

8 Oct

Here are the previous posts in this series. Take a look! To Grace. To Grace (Part 2): Walking Through The Fire. To Grace (Part 3): Accepting Love. To Grace (Part 4): Finding Your Voice.

Dear Grace,

Saying that I’ve been feeling scared recently is an understatement. Over the past month, my muscles have gotten tighter than usual, which is causing me to fall more. Even though I know the increase in muscle tightness is connected to the colder weather, it is still scary, and it often causes me to worry about years in the future where my walking could become limited due to tight muscles and severe back pain. I don’t know how much you worry about the future. Even though you are only 12, I know what you’ve been through so far in your life. I know your pain. Therefore, I wouldn’t be surprised if you did find yourself worrying about the years ahead. However, since I know how much I worry, I do hope that you don’t find yourself worrying as much as me. It’s not emotionally healthy. I think it causes me more anguish than happiness. Though it is something that I’m trying to work on, it’s not as easy thing to fix since I’ve had trouble with anxiety ever since I was a little girl.

You and I are incredibly similar in the hobbies we’ve had over the years. We both became involved in community theatre, and we also had years in which we both rode horses. Even though you were more involved in horseback riding than I was since you’ve participated in events and won blue ribbons, I know that it’s an activity that we both benefited from. Participating in “hippotherapy” was an alternative to constantly having physical therapy in same room with the same therapist week after week. Before I participated in “hippotherapy,” I thought that horse therapy was primarily used with autistic kids. I didn’t know that they could be used with kids who had physical disabilities as well. According to the American Hippotherapy Association, “Hippotherapy is a physical, occupational, and speech-language therapy treatment strategy that utilizes equine movement as part of an integrated intervention program to achieve functional outcomes.”

In terms of the hippotherapy that I participated in, I focused primarily on balance, trunk strength and control, and building overall postural strength and endurance. The specific exercise that I remember really well was called “around the world,” in which I’d start by sitting normally on the horse and then swinging my legs over the horse multiple times until I’d done a complete 360 while sitting on the horse. Now that I think about it, even though this activity sounds fun to me now, I was incredibly scared when I actually had to do it. The thought of falling was terrifying to me, and without the encouragement of my horseback riding teacher, Miss Mary, I know that I wouldn’t have been able to complete my exercises. Despite the fear of falling, it was an understandable worry since I did end up falling off multiple times. Even though I know those falls and having Miss Mary tell me I needed to get up and go get my horse was hard at the time, I know that it all made me a much stronger person. Miss Mary was a very important figure in my life because she was one of the first people (not counting my parents and my physical therapists) who helped me develop a tougher skin. Therefore, despite being afraid of falling and afraid that my horse would start to canter with the other horses (which was much faster than I ever wanted to go), I know that it made me stronger.

I know that your hippotherapy experience was probably much different from mine. However, I don’t doubt that you gained some of the same strength that I did when you worried about falling but then knew that your teacher wouldn’t let you fall. Either way, those little fears: the fear of falling, the fear of the horse going faster than you want him to, the fear of what lies ahead in our future in terms of our abilities, they are what make us who we are, Grace. We wouldn’t be who we are if we hadn’t learned in the beginning to let those fears propel us forward instead of hold us down. I don’t know how much that applies to you these days, but I have a feeling that you work hard too. We have to. It’s the only way through the situation we’ve been faced with. Without the strength that I’ve gained from the little fears in my life, I wouldn’t be where I am today. I wouldn’t be a junior in college who’s lived away from home since she was 16 and spends her days blogging and writing her daily story. I wouldn’t be able to talk so openly about what I have experienced.

I know how easy it is to let the fears bring you down, Grace. I’ve been there. I know how hard it is to push through and tell yourself that being more independent will be just what you need. But it’s the only choice we have. Keep on keeping on, and remember that I love you.

Amelia