I am scared. No, scratch that. I am terrified. I've never broken a bone, I've never even had one stitch! And now spinal fusion? I'm not ready for that. I'm terrified.
I remember the day I got diagnosed like it was yesterday. I was 10 years old, and Dr. Penny was doing my physical and noticed that I had a slight curve. She she told me to go see Dr. McGuire at the Creighton Medical Center. A few weeks later I found myself sitting in the waiting room. I had my first X-Ray. The first of many, many X-Rays. The results were pretty good! It wasn't a large curve. 20 degrees or so. Nothing to really worry about yet. I had to go back every 6 months and get X-Rays to make sure nothing changed. So for a solid two years I never missed an appointment, and my X-Rays always came back with good results. No change! So when I couldn't make it to one appointment, it wasn't the end of the world. Nothing ever changed anyway, so we just waited another 6 months to go back to Dr. McGuire. That one missed appointment literally changed everything. When I went back and got my X-Rays, Dr. McGuire came back with a sullen look on his face. My curve changed. Not just a little change, but a drastic change. Instead of being a 20 degree curvature, it was a 40-something degree curvature. In other words, that wasn't good. Dr. McGuire referred me to the Nebraska Spine Center where I met my current doctor, Dr. McClellan. I remember sitting in the office, age 13, and asking the nurse, "am I going to have to have back surgery?" The answer was no. The curvature wasn't bad enough and I was way too young. I hadn't even hit puberty yet - I had a lot of growing to do. I was relieved! The last thing I wanted was a surgery that would implant 2 titanium rods in my back and make me have a huge scar. No thanks. Instead, I had to wear a back brace. As if middle school wasn't awkward enough, add a back brace to the equation and you can only imagine how great my middle school years were! But - I didn't complain. If this was going to stop me from having to have surgery, I was all for it! I wore that leopard print back brace religiously. 23 hours a day! For two whole years. That is a long time to have to wear a plastic body suit that disabled my bending abilities, but again, I didn't complain. It became normal. Finally my sophomore year of high school, I stopped growing. This was great news, because when I stopped growing, I could get my brace off! This was because the brace was supposed to stop my curvature from increasing while I was growing. When you stop growing, your spine is supposed to stop moving. So, I got my brace off! Two freakin years, and I was done! My scoliosis worries were behind me...or so I thought.
After I got my back brace off I had to continue going to the Spine Center to make sure my curvature didn't keep increasing. The chances of your spine changing after you're done growing are very slim, so no one was too worried. Welp. I'm apparently the rarity. My curvature kept increasing and increasing, and I kept getting more and more frustrated. I spent two years dealing with a stupid plastic body vest that was supposed to make everything better - but it didn't. So at my most recent appointment, we had to make a decision. My curvature is at 58 degrees, which is not good. But! It's not HORRIBLE. I could live with a 58 degree curvature! Unfortunately, my spine doesn't want to stay still. It wants to keep curving. The chances of my spine staying at a 58 degree curvature are around 0%. As I get older, my curvature will keep getting worse, causing major problems. So, what're the other options you ask? Well, let me tell ya. It's a little something called spinal fusion. This means that I will have two titanium rods lining my spine, while little screws fuse it all together to make my it straight. This means that I, A) am going to be about 2 inches taller. That's not the worst thing in the world but come on, I'm already like 5'9. B) there are going to be some major restrictions afterwards. I won't be able to do contact sports or jump on a trampoline or do P90X or anything that really strains your back. Again, not a huge deal, but still sucks. Maybe I wanted to become a professional kick boxer?! C) this is a 6 week recovery. That's a long time to not be able to do much of anything. I'm a very active person, and I can't stand still. Literally I am ALWAYS doing something. Soooo that really sucks. D) I'm going to have a big scar down the center of my back. Really not a big deal at all, but what 18 year old girl wants to have that?! I can tell you. Zero.
All of that terrifies me. The surgery itself is terrifying! 5 hours under while they completely cut my back open and put metal RODS and SCREWS in there?! Ummm yeah no thanks. I'm terrified for afterwards. Am I ever going to be able to touch my toes ever again? Am I even going to be able to touch my knees?! Dance has been a HUGE part of my life since I could walk...will I ever be able to dance like I can dance right now? The answers to all of those questions are most likely (hopefully) yes. Everyone has told me that after about 6-8 weeks, things go back to normal! That you form a new normal...but I don't want a new normal. I like my normal right now.
So yes, I am terrified. But I know I can get through it. I am the most stubborn person in the world. Seriously. Ask my parents. Not only am I stubborn, but I am determined. I refuse to let this surgery hold me back from anything. I refuse to let it stop me from living my life to the fullest. If anyone can get through it, it would be me. It will be me! My surgery is a little over 3 months away. June 17th. That means my summer will be filled with lots of Netflix and ice cream, but hey, that doesn't even sound half bad. I am scared. But I will be okay.
Saturday, March 1, 2014
Monday, February 24, 2014
Spread the Word to End the Word
As I was walking through the halls today, I heard the word. The one word that makes every bone in my body shake with anger. The r-word. I have never and will never understand why people use the word retard in a derogatory way. That word is never, EVER okay. Yes, people are entitled to their own opinions, but the use of the r-word is discrimination, and discrimination is never justifiable.
Here is something to put it in perspective:
There is a young girl who has cancer in a classroom. Two kids a couple desks over from her are talking about something that they don't particularly like - something that they think is stupid. One kid says to the other, "That is SO cancerous." Another person in the class says to another kid "You are cancerous." Instead of using the word stupid, they choose to use the word cancerous as a synonym for stupid - right in front of a person who has cancer. If this situation were to ever happen in real life, those kids would get in HUGE trouble - as they should. It is never okay to use a medical term to describe a person or an activity that you don't particularly enjoy.
What's the difference?
Using the word retarded is exactly like using the word cancerous. It is using a medical term (that is barely ever used anymore) to describe something that you don't like. It is saying that people with disabilities are stupid. That statement could not be FARTHER from the truth. In fact, people with disabilities are some of the most intelligent people I know. They are the most loving, open-minded, nonjudgmental and inspiring people in this world. They know things about life that I can only hope to understand one day. All they want is to be treated just like everyone else is treated. They want to have friends and talk about their day and hang out with people on the weekends, just like everyone else. Unfortunately, when the r-word is used, they start to feel like they are outsiders - like they are stupid. According to Fiona Rillotta and Ted Nettelebeck of Adelaide University, when people with disabilities are aware of negative attitudes held by other people, their self-confidence starts to decrease. In other words, when people use the r-word in front of someone who has a disability, that person starts to feel like they are less. Again, that statement could not be farther from the truth. People with disabilities are more. So much more than someone who chooses to use a malicious word to describe how they are feeling.
With that being said, some people may try to argue that it is okay to use the r-word when they aren't in front of a person with a disability. That statement is completely false. The r-word does not just hurt people with disabilities. It hurts people everywhere. It hurts everyone who has family member with a disability. It hurts everyone who has a friend with a disability. It hurts people who devote their lives to being advocates for people with special needs. It hurts teachers who spend months and months trying to get people to understand that people with disabilities are more alike than different. It hurts countless numbers of people who understand that people with disabilities are the opposite of stupid.
It definitely hurts me. And after reading this, I hope that it hurts you, too.
All I ask is this: the next time you hear the word retard used in a discriminatory way, stop them. Explain to them why the r-word is never okay to use. Tell them that they should get to know someone who has a disability, so they can understand why that word should never be used. Tell them how hurtful it is, and why it is so hurtful. And if they continue to use that word? Buy them a dictionary.
My dream is that my future children will grow up in a world where the r-word does not exist. You can be a part of that movement. Spread the word to end the word.
Here is something to put it in perspective:
There is a young girl who has cancer in a classroom. Two kids a couple desks over from her are talking about something that they don't particularly like - something that they think is stupid. One kid says to the other, "That is SO cancerous." Another person in the class says to another kid "You are cancerous." Instead of using the word stupid, they choose to use the word cancerous as a synonym for stupid - right in front of a person who has cancer. If this situation were to ever happen in real life, those kids would get in HUGE trouble - as they should. It is never okay to use a medical term to describe a person or an activity that you don't particularly enjoy.
What's the difference?
Using the word retarded is exactly like using the word cancerous. It is using a medical term (that is barely ever used anymore) to describe something that you don't like. It is saying that people with disabilities are stupid. That statement could not be FARTHER from the truth. In fact, people with disabilities are some of the most intelligent people I know. They are the most loving, open-minded, nonjudgmental and inspiring people in this world. They know things about life that I can only hope to understand one day. All they want is to be treated just like everyone else is treated. They want to have friends and talk about their day and hang out with people on the weekends, just like everyone else. Unfortunately, when the r-word is used, they start to feel like they are outsiders - like they are stupid. According to Fiona Rillotta and Ted Nettelebeck of Adelaide University, when people with disabilities are aware of negative attitudes held by other people, their self-confidence starts to decrease. In other words, when people use the r-word in front of someone who has a disability, that person starts to feel like they are less. Again, that statement could not be farther from the truth. People with disabilities are more. So much more than someone who chooses to use a malicious word to describe how they are feeling.
With that being said, some people may try to argue that it is okay to use the r-word when they aren't in front of a person with a disability. That statement is completely false. The r-word does not just hurt people with disabilities. It hurts people everywhere. It hurts everyone who has family member with a disability. It hurts everyone who has a friend with a disability. It hurts people who devote their lives to being advocates for people with special needs. It hurts teachers who spend months and months trying to get people to understand that people with disabilities are more alike than different. It hurts countless numbers of people who understand that people with disabilities are the opposite of stupid.
It definitely hurts me. And after reading this, I hope that it hurts you, too.
All I ask is this: the next time you hear the word retard used in a discriminatory way, stop them. Explain to them why the r-word is never okay to use. Tell them that they should get to know someone who has a disability, so they can understand why that word should never be used. Tell them how hurtful it is, and why it is so hurtful. And if they continue to use that word? Buy them a dictionary.
My dream is that my future children will grow up in a world where the r-word does not exist. You can be a part of that movement. Spread the word to end the word.
Sunday, February 23, 2014
Jordan
I've been wanting to start a blog for a long time for lots of reasons. The main one being so I can document my journey through spinal fusion this summer! Hopefully by writing about my personal experience with scoliosis surgery I can help other people who have to go through the same thing. BUT I don't have to worry about that for a couple more months!
As a senior in high school I have been filling out scholarship essay after scholarship essay, and almost all of them are about the same thing: the reason why I am the way I am. Most people are aware that I have a very strong passion for working with people who have disabilities, and have had this passion/gift my whole life. I have devoted my life to being an advocate for people who can't always be advocates for themselves, and more importantly, doing what I love most. What a lot of people are not aware of is why. So, here's my story.
I was a kindergartener at Oakdale Elementary School when I met Jordan Kreus. I gravitated toward him from the moment that I saw him. At the time, I thought that Jordan was just like me. At the young age of five, I had no idea what the word autism was or meant. To me, Jordan was just like everyone else. To this day, I still believe that he is. Jord and I became inseparable. I was with him as much as I possibly could be. When he was mainstreamed into general education classes, I would be sitting right next to him. Every day at recess you could find me standing with him on the blacktop counting the cars that were passing by. He knew my weird quirks and I could read him like a book. We became best friends. From having a relationship with Jordan I was welcomed into the special education room at Oakdale with open arms. I gained friends of all kinds of different abilities while at the same time shaping my future. I knew that one day I would be the one running a special ed. classroom. As the years passed, Jordan and I only become closer. When we went into the middle school, I made sure to be in the special ed. room doing what I loved most whenever I possibly could. Two years later we found ourselves in high school. I became a volunteer aid the first day of freshman year. I started volunteering at Camp Munroe that same year, and then started working there when I turned 16. Now, I'm almost done with high school and going to UNO to major in special education and get an endorsement in severe autism and profound disabilities. And guess who my best friend still is? Jordan. Throughout13 years, Jordan has never left my side.
Autism does not define Jordan, but Jordan having autism has completely defined my future. Without him, I would not be the person I am today. I have been blessed with SO many amazing opportunities because of being so involved with the special education program. I have met so many amazing people and am changed and inspired every single day because of the kids that I work with. I am SO blessed to have found the reason I was put on this world at such a young age. I cannot wait to be able to do what I love most for the rest of my life - and it's all thanks to Jordan.
As a senior in high school I have been filling out scholarship essay after scholarship essay, and almost all of them are about the same thing: the reason why I am the way I am. Most people are aware that I have a very strong passion for working with people who have disabilities, and have had this passion/gift my whole life. I have devoted my life to being an advocate for people who can't always be advocates for themselves, and more importantly, doing what I love most. What a lot of people are not aware of is why. So, here's my story.
I was a kindergartener at Oakdale Elementary School when I met Jordan Kreus. I gravitated toward him from the moment that I saw him. At the time, I thought that Jordan was just like me. At the young age of five, I had no idea what the word autism was or meant. To me, Jordan was just like everyone else. To this day, I still believe that he is. Jord and I became inseparable. I was with him as much as I possibly could be. When he was mainstreamed into general education classes, I would be sitting right next to him. Every day at recess you could find me standing with him on the blacktop counting the cars that were passing by. He knew my weird quirks and I could read him like a book. We became best friends. From having a relationship with Jordan I was welcomed into the special education room at Oakdale with open arms. I gained friends of all kinds of different abilities while at the same time shaping my future. I knew that one day I would be the one running a special ed. classroom. As the years passed, Jordan and I only become closer. When we went into the middle school, I made sure to be in the special ed. room doing what I loved most whenever I possibly could. Two years later we found ourselves in high school. I became a volunteer aid the first day of freshman year. I started volunteering at Camp Munroe that same year, and then started working there when I turned 16. Now, I'm almost done with high school and going to UNO to major in special education and get an endorsement in severe autism and profound disabilities. And guess who my best friend still is? Jordan. Throughout13 years, Jordan has never left my side.
Autism does not define Jordan, but Jordan having autism has completely defined my future. Without him, I would not be the person I am today. I have been blessed with SO many amazing opportunities because of being so involved with the special education program. I have met so many amazing people and am changed and inspired every single day because of the kids that I work with. I am SO blessed to have found the reason I was put on this world at such a young age. I cannot wait to be able to do what I love most for the rest of my life - and it's all thanks to Jordan.
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