Tag Archives: Operating Room

The femoral derotational osteotomy: The longest marathon.

14 Jan

I was born with Cerebral Palsy. In my case, I was born with my femurs angled inward and my hips tilted forward, and my angled femurs caused my feet to point in as well. Therefore, as a kid, when I would walk, I’d end up tripping over my feet, which made it harder for me to walk properly. On October 8, 2001, I had my first intense operation, a femoral derotational osteotomy. In some ways, it doesn’t seem like that long ago. The femoral derotational osteotomy was an intense operation in which the surgeons straightened out my femurs in order to allow me to walk straight. Rods were also used in order to keep my legs straight, but they would be taken out the following year once everything had fully healed. Even though the operation itself isn’t something I remember since I was asleep, I do remember the conversation I had with the OR nurses before I was put under. When the nurses looked down at me on the operating table and asked me to tell them about my animals, I proceeded to include the names of my pets at home as well as the names of all of my stuffed animals (and I had a lot). The nurses just smiled. They didn’t seem to mind.

When I woke up in the ICU, I had on two long-leg casts that were connected by a bar in the middle. I also had an epidural, so I couldn’t feel the full extent of my pain. However, those first few days in the ICU were spent not eating as much jello as I could manage, but continually getting sick from the anesthesia that had put me under during the operation. Trust me, having a nurse come over with a tube to suck the vomit out of your throat is completely disgusting, but it’s better than having the full taste of vomit in your mouth by waiting for it to come all the way up. Though I did eventually leave the ICU and Shriner’s after my first intense operation, I had to keep those long-leg casts on for the next 8 weeks, and during those 8 weeks, I became completely dependent on my parents. They had to help me shower, help me go to the bathroom, and help me change my clothes among many, many other things. It was only the beginning of the very long road to gaining my own independence.

In many ways, the femoral derotational osteotomy was the beginning of a marathon that would last much longer than just a few days. It was the beginning of the complete hell I would go through over the next 6 years until I reached the age of 15. By the age of 15, I had endured 3 intense surgeries, 15 years of physical therapy, and more pain that I ever thought possible. However, despite all of that, I persevered. I pushed through because I knew it was the only thing that would allow me to be independent. In the beginning, after that first operation, my parents were helping me do everything. I was completely dependent on them. However, by age 15, I was not only independent, I was gearing up to leave home the following year to attend an all-girls’ boarding school in North Carolina. Though leaving home was and always will be one of the hardest things I’ve ever done (not including my operations and all the intense physical therapy that followed them), it was also the best decision I ever made for myself. As with so many other things in my life, I’ve learned from it all, but more than that, I have been able to better understand the person I am supposed to become. Though I would have never imagined that I’d be using experiences from my own life in order to relate to and lift up other kids with CP and other disabilities, it’s beginning to feel like a permanent place I belong.

In the right hands, a memoir is the flecks of gold panned out of a great, muddy river. A memoir is those flecks melted down into a shapable liquid that can be molded and hammered into a single bright band to be worn on a finger, something you could point to and say, “This? Oh, this is my life.” Everyone has a muddy river, but very few have the vision, patience, and talent to turn it into something so beautiful. That is why the writer matters, so that we can not only learn from her experience but find a way to shape our own. -Ann Patchett, afterword of Autobiography of a Face

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To Grace (Part 2): Walking Through The Fire.

25 Apr

Since I got such awesome feedback from the first post I wrote To Grace, I decided to write a part two. Who knows…this could just be the beginning of posts I write out to kids who have CP just like me. But this “letter” in a sense is simply reflecting on what I have gone through while having CP. By addressing it to Grace, I am connecting with someone I know personally who also has CP. However, this can apply to anyone who has CP, so I’ve decided to not include a “To:” line, and instead, I’ll just jump right in.

First things first, don’t be afraid to cry. I know that you have been faced with so many struggles and you feel like you need to act like you’re not afraid so that other kids who don’t understand will refrain from taunting you. However, you can be afraid. I know that you don’t want to, but you shouldn’t feel bad about being afraid. If anyone else was in your situation, they’d be terrified. Anyway, as I said before, don’t be afraid to cry. I know that you want to be strong for your family and your friends, but crying doesn’t mean you’re weak. Sometimes, it means you’re that much stronger because instead of holding back how you feel, you’re letting it out, tears and all.

Find your own sense of security, something that makes you feel safe. For me, that was my stuffed animals. For every one of my surgeries, I took a stuffed animal into the operating room with me. My stuffed animal of choice even got a hospital band of its own so that it was like we were experiencing the pain together. When you split fear or pain between 2 people, even if one of them isn’t a real person, it’s as if there’s someone holding your hand as you walk through the fire. I mean, it doesn’t make a huge difference….but it could be the difference in feeling like you have a friend beside you and feeling totally and utterly alone.

Find a release. Whether it’s watching tv, reading a book, or writing in your diary…find something that can get your mind off of things for a few moments. Trust me, I know it’s easier said than done. When you’re in the hospital or you’re going to PT, all you can think about is the fact that in a little over an hour you’ll be crying. And you wish that just for one day, you could not end up hurting so much after that hour of PT. I know how hard it is. I’ve been there. In your mind, you wish you could be anywhere else, and in your mind, enduring that pain, even for only an hour, is the worse kind of pain. That’s why it’s good to find some sort of release. Some way to let out some of the anxiety. I’ve suffered with a lot of anxiety throughout my life, but it was especially bad when I was going through all my surgeries and PT. My way of letting out my anxiety was through writing. I’d write about what I was feeling. I’d write about the fact that I wish I could be anywhere but on my way to PT. I’d write about how much it hurt, and how I wished that there was someone who could understand. I’d write any and everything, and even though all the pain and fear was still there when I was done, I was happy that for a few precious moments I was able to vent to not a person, but to something that seemed more trusting at the time: a blank sheet of paper.

Lastly, probably one of the most important things I could say, is smile. I know it seems like such a simple task, but some days, even though they could be few and far between, are good. Some days aren’t quite so tough, or rather, parts of some days aren’t as tough. Smile during those times. Though it may not seem like it, you are so awesome. You’re facing a level of pain that few people can even imagine, and best of all, you’re getting through it. You’re not letting it tear you down. Yes, lots of days are hard, but you’re fighting. That counts. Rather than sitting on the floor feeling sad that you can’t do things as well as other kids, you’re standing there trying to figure out how you can do it in your own way. It may not be perfect, but guess what? It doesn’t have to be. All that matters is that you’re walking through the fire that’s your life, but instead of standing around and letting the flames consume you, you’re running straight into the flames and that, my friend, is so freaking awesome!

Tuesday’s Tunes: Dulling The Pain With Alan Jackson.

20 Mar

On the drive up to Shriner’s Hospital for my second surgery in 2003, my mom and I stopped at Best Buy so that I could get a new cd as a present. I picked Alan Jackson’s Greatest Hits Volume Two. From the time until I bought that cd until I went into the operating room for my second surgery (and afterwards), that cd played in my Walkman. Now, when I hear a song from that album, I think of how I replayed that cd in order to drown out fear. I remember my roommate at Shriner’s, Jocelyn, and her bouncy blonde curls and heavy southern accent. I remember how Jocelyn and I would go to the computer room down from our room and play Who Wants To Be A Millionaire, laughing at how much money we “won” or “lost.”

In previous posts, I’ve mentioned how specific songs have brought me back to a specific moment, a specific time in my life. But in terms of the Alan Jackson album, I’m not only reminded of specific memories, I’m reminded that music could also make me happy. Though my parents most likely got sick of the fact that I listened to that cd on repeat for months, it dulled the pain in a way. Or rather, it brought a small smile to my face in between the grimaces of pain. When I think of the Alan Jackson cd though, I remember how it didn’t take me long at all to memorize the words. I remember listening to it as Jocelyn wished me luck in surgery, and then later learned that she had been discharged while I was in surgery, but chose to not go home until after my surgery to make sure that I was okay. Or as okay as could be expected. I remember the good things. The things mixed in with the bad that reminded me to keep trying even though all I wanted to do was cry.

I’m beginning to see that not all the memories in my book will be sad. As I push through the really bad ones, I’m reminded of the good ones (from the hospital)….like dulling the pain with Alan Jackson, my first hospital roommate (Ginny), the benefits of craft night, the weekly visit of the therapy dogs, the ICU nurses….and more that I can’t think of right now. When I visited my best friend Skidmore this past weekend and she read what I’ve written so far in regards to my book, she suggested that I alternate chapters between good and bad memories. She pointed out that a “happy” chapter may be a nice breather in between the really sad, painful tear-jerker type chapters, which is a good point.