Tag Archives: Emotions

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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Own your story.

20 Apr

Owning our story can be hard but not nearly as difficult as spending our lives running from it. Embracing our vulnerabilities is risky but not nearly as dangerous as giving up on love and belonging and joy—the experiences that make us the most vulnerable. Only when we are brave enough to explore the darkness will we discover the infinite power of our light.-Brene Brown

When I came across this Brene Brown quote a few days ago, I couldn’t help but realize how much it applied to my certain circumstances. Not just the overall situation of living with Cerebral Palsy, but the more recent circumstances of realizing that I must now face the emotions which resulted from my recent return to physical therapy. Though it would be so much easier to resist thinking about the emotions and memories that returning to physical therapy brought up for me, I know that I must face them if I’m going to be able to move forward.

Throughout my life, I have heard people tell me how awesome it is that I don’t let my CP define me. According to my CP doctor, I “make it look easy.” Though I do understand that most people are trying to compliment me, it’s also hard for me to believe them in the full sense of the phrase. Though I don’t ever introduce myself as “the girl with CP,” I often wonder if that’s what others are thinking, specifically people I have just met. Overall, I try not to let myself focus too much on all of the difficulties it brings, because if I did that, how the heck would I still be able to find joy in the little things? However, at the same time, my CP affects me on a daily basis. Every day is hard, and every day I am reminded of how different I am from those around me. At the same time, I am reminded of how far I’ve come, and that’s where “owning my story” comes in.

Though I began writing my memoir in order to help myself come to terms with what I’ve faced and to help others in similar situations, I have also just wanted to shed a light on just how many of us are struggling in ways people may not truly understand. Putting all the benefits and support aside, “owning my story” through writing about it and essentially saying “Yes, this is who I am, and I am damn proud” has been the most frightening, scariest, most frustrating and overall hardest thing I’ve ever done. In all actuality, it sucks, but it’s helping me. Truthfully, it reminds me of the idea that you’ve got to hit rock bottom before you can truly understand your own strength. It’s cliché, but it’s also true. In many ways though, I feel as if trudging through this first draft of my memoir is similar to hitting rock bottom, over and over again.

Despite the frustrations of “owning my story,” it’s my way of being the voice of so many others who aren’t able to express what it’s like living with a disability. If writing my memoir means I can give a voice to a few of those people, then I will plunge into the darkness of it. Just because there are people who aren’t able to express the emotions connected with what they have experienced doesn’t mean that they shouldn’t have a chance to still be heard. If anything, all of those people deserve it a little bit more. After all, every one of us has so much to learn from each of the people we come into contact with, so why not start by owning the experiences we’ve faced, no matter how scary and painful?

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.

Sports Illustrated Kids Brings Awareness To CP.

4 Feb

A few days ago, I watched the inspirational story of brothers Connor and Cayden Long, the winners of the Sports Illustrated Kids 2012 SportsKids of the Year award. However, I have found myself watching it more than once over the last few days simply because it’s that amazing, but be sure to have your Kleenex ready!

The story of Connor and Cayden not only brings awareness to Cerebral Palsy, but it also emphasizes that those with disabilities deserve to be treated like everyone else. Connor, brother to Cayden who has CP, has done something incredible. Through his decision to include his brother in triathlons, he is reshaped the course of his brother’s life, whether he knows it or not. He’s making a point to say that even though his brother has CP, he shouldn’t be viewed as any less than anyone else. Through Connor’s desire to connect with his brother, he is giving Cayden a voice that may not have been heard otherwise. He is helping others become more aware of CP and other disabilities, which is definitely needed in today’s society. Hopefully the more aware people become regarding CP and other disabilities, the less fear there will be toward those who are “different.”

The fact that Connor, who is only 9 years old, was able to make so many important points concerning the acceptance of those with disabilities is incredible. Sadly, there probably aren’t even that many adults that would have the courage or understanding to make such claims. Though I know that some of that fear stems from a lack of education and awareness about those with disabilities, it’s why we need more people like Connor who have a background with people with disabilities (whether it’s a family member or friend) and who are not afraid to get up and say what needs to be said. Though there is still a long way to go regarding society’s acceptance of those with disabilities, allowing the public to become more aware through stories such as this is how it begins.

The story of Connor and Cayden is yet another emphasis on why I have chosen to share my own story of CP. Though it may take quite a while for me to actually get my complete story on paper, I know there are people with disabilities who have some of the same pain, fears, hopes, and dreams as I do, but are unable to express how they are feeling or just want to know they are not alone. That’s why I’ve kept on writing. These stories need to be brought to light, both for those who have lived through the experiences as well as for those who are striving to understand just what someone they know with a disability is feeling.

The Newtown Music Project.

15 Jan

I just came across this video after seeing the song by Ingrid Michaelson and the Children of Newtown on iTunes, and I can’t stop crying. Though no amount of words can express the beauty of the idea, I just think using music as a way for the Newtown children to send love to those they have lost is so incredibly special. It does not seem like a month has passed since the Sandy Hook tragedy, and my heart still aches for the families who have lost loved ones.

I have always been amazed at the healing power of the arts. Whether it’s writing a story or singing a song, there is something incredibly powerful about using art as a way to release your emotions, while also finding a way to grieve and very slowly attempt to move forward (but never forget). Though I know there is nothing anyone can say to the families of those who have lost children they love due to the Sandy Hook tragedy, I only hope that in time they can embrace projects such as this to feel the love and thoughts so many others are sending their way.

And to the sweet, sweet children lost in the Sandy Hook tragedy, this song is for you. I only hope that maybe you are in fact…somewhere over the rainbow.

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.

A yearly dose of The Bell Jar.

22 Dec

For the past 4 years, ever since I was 16, I have read Sylvia Plath’s The Bell Jar around this time of year. Though I never planned to re-read it every year around the holidays, that’s just how it turned out. In all honesty, The Bell Jar is probably one of the most depressing books I have ever read, but it is also one of the most accurate portrayals of madness, or descending into madness, from a literature standpoint that I have discovered as well. I guess you could say I love it because of its psychological aspects. However, despite how depressing the novel is, there is a reason Sylvia Plath is viewed as an acclaimed poet and writer. Her words, when put together, form sentences that allow you to feel something. Granted, the feelings her words bring to light aren’t necessarily happy ones, but in all honesty, Sylvia Plath wrote about life, her life. She didn’t sugarcoat it. She didn’t pretend she was happy when she wasn’t. She threw her readers right into the darkness and the loneliness of her life and her mind, and in a strange way, it’s beautiful.

Here are some quotes from The Bell Jar I thought I’d share:

  1. “Let me live, love and say it well in good sentences.”
  2. “I felt my lungs inflate with the onrush of scenery—air, mountains, trees, people. I thought, “This is what it is to be happy.”
  3. “I wanted change and excitement and to shoot off in all directions myself, like the colored arrows from a Fourth of July rocket.”
  4. “At this rate, I’d be lucky if I wrote a page a day. Then I knew what the problem was. I needed experience. How could I write about life when I’d never had a love affair or a baby or even seen anybody die? A girl I knew had just won a prize for a short story about her adventures among the pygmies in Africa. How could I compete with that sort of thing?”
  5. “I am sure there are things that can’t be cured by a good bath but I can’t think of one.”
  6. “Piece by piece, I fed my wardrobe to the night wind, and flutteringly, like a loved one’s ashes, the gray scraps were ferried off, to settle here, there, exactly where I would never know, in the dark heart of New York.”
  7. “It was a queer, sultry summer, the summer they executed the Rosenbergs, and I didn’t know what I was doing in New York.”
  8. “I saw myself sitting in the crotch of this fig tree, starving to death, just because I couldn’t make up my mind which of the figs I would choose. I wanted each and every one of them, but choosing one meant loosing all the rest, and, as I sat there, unable to decide, the figs began to wrinkle and go black, and, one by one, they plopped to the ground at my feet.”
  9. “Secretly, in studies and attics and schoolrooms all over America, people must be writing.”
  10. “I had hoped, at my departure, I would feel sure and knowledgeable about everything that lay ahead — after all, I had been “analyzed.” Instead, all I could see were question marks.”
  11. “The sun, emerged from its gray shrouds of cloud, shone with a summer brilliance on the untouched slopes. Pausing in my work to overlook that pristine expanse, I felt the same profound thrill it gives me to see the trees and grassland waist-high under flood water—as if the usual order of the world had shifted slightly, and entered a new phase.”

Is there a specific book you make a point to read every year?