Why I fell in love with "The Fault in Our Stars" (before it become a movie)

I read the Fault in Our Stars by John Green about a year ago, before news of the movie even came out. I read it per request by a friend who told me that it was worth reading and because she thought I'd like the way it was written. And boy was she right.

Just as Hazel Grace says about Imperial Afflictions, John Green is the first author that I've ever read who can portray an illness/disability and make it seem like a minor detail while still making it apart of the story...as someone with Charcot Marie Tooth (a neuropathy that makes it painful and tiring to walk and causes me to get sick more easily) there are actually  themes of the book I can relate to. Which is rare.
 
   Now I'm not saying that my life is any way as hard or painful as Hazel Grace's or Augustus Water's. I'm not saying that at all. I'm not dying. There is a very good chance that I will live into adulthood. I live a life that is probably much easier then most people in my situation. But my CMT isn't going away. In fact, more then likely, I believe that it will progress. There is a good chance that I will someday be permanently in a wheelchair. I know for a fact that I will always be tired and weak and get my pain cycles. There are parts of Hazel and Gus' story that tug at my heart string. For example: when she is at Anne Frank's house and has such a hard time making it up the stairs? I've been there. That feeling of  "I can do this. I don't need to be different then the other people here". That feeling of "I'll show them". That feeling of "I'm perfectly fine, I don't need to be treated like someone who is sick" while in truth you are that person. You are that person can't do all the things someone else can do.
    When Gus is calls Hazel in the middle of the night sobbing and it turns out he was trying to buy cigarettes because it's the "one thing he wanted to do on his own"? I have felt that so many times.  The feeling of wanting to be able to rely on the body that is suppose to ABLE you to do something not hinder it. The feeling of why even exist when my life is so full of sickness? All of these parts of the book (and Hazel's questions and overall being) were what hit home for me and caused me to enjoy the book so much. Because I can relate. I know that I've felt that way at least once in the 16 years that I've been alive.
 
   Why do I love Gus so much? It's not because he's dreamy and mysterious, though that may be part of it.. It's because he sees Hazel as who she is as a person and not the illness. He treats her as if she is not her problems. The part in the book where he asks what her story is and she begins to tell her cancer story? He interrupts and tells her he wants to know HER story, not her cancer story. He wants to know her dreams and her hobbies. The unique things that set her apart from everyone else. That's what I want. I want a man to love me and not to linger on my disability. John Green doesn't romantize the illness. He romantizes the love between two people who just happen to have an illness. Sure Gus worries and makes sure that Hazel is OK to do something, but he doesn't stay bent on the subject for too long. He plans ahead to make sure that Hazel has everything she needs, yet he doesn't worry about the moment. He wants to live and he wants to live his life with Hazel no matter how hard it gets.
 
John Green has done something that no other author that I've ever read (and there have been ALOT) has ever done before. And that is write a book that has deeply impacted me because I can relate to the main character without feeling like something to be pitied or something to be idolized. He has penned a story that doesn't linger so much on the life that a chronic illness or terminal illness can take away but instead focuses on the life that one can live while surviving and dealing with the illness. This is something special. And something that I, someone with a disability, hardly ever get.

John Green gave us a positive light to shine through, even if that wasn't his intention when writing 'The Fault in Our Stars'. He gave us a voice that is telling the world that we are living a full life. That is what we strive for each day. To live a full and happy life. And that is something that I am so very grateful for. So, Mr. Green, if you EVER happen to stumble across this or actually read it, I (on behalf of me and my friends who struggled with any type Muscular Dystrophy) would like to say thank you. Thank you for writing a book that I can relate to and have fallen so in love with. It hold a special place in my heart for a different reason then most people have.

Sincerely,
Dana

My Love for Horse Racing

I decided to write this today because I'm having a pain cycle and I was rewatching Princess of Sylmar races and the idea hit. Actually I've been meaning to write something like this. I'm sorry that it's not much.

 

You guys all know my story, because I've previously posted about it, but for you guys who don't know...here it is in a nutshell:

 

When I was five years old I was finally diagnosed with a form of Muscular Dystrophy called Charcot Marie Tooth (CMT), a neuropathy that affects the nerves in my hands and legs. It wears away the coating of the nerve leaving it exposed and causing weakness and pain.

At first my disability changed every aspect of my life as I learned how to live with it...and then eventually I got the hang of living with the tiredness and pain cycles since they were few and far between. Physical therapy helped and I got stronger. But lately my CMT has gotten more progressive; over the last four years I've gotten new leg braces that I wear if I go to exercise, I now use a wheelchair for a lot of the errands I run, and I use a walker too. I've dealt with my pain cycles starting up faster and staying longer. All of these changes started to mess with my life. While I still excel in school and all of my classes my athletic life has been put on hold. I used to compete in swimming but every time I start to make progress another pain or fatigue cycle kicks in and I have to start all over again. There are very few sports that are around for me to participate in that don't put negative pressure or strain on my legs; swimming is about the only sport that allows me to perform as if I didn't have my disability.

But there is one other sport that I can participate in heavily. Thoroughbred horse racing. While it all sounds cliche, horse racing is a sport that doesn't require me to be physical other then walking down to the track to watch the horses. I know very well that I can never be a jockey, but that doesn't matter. The fans and the spectators are just as important as the trainers, owners, and jockeys. I mean without us there wouldn't be much of a sport. From the side lines I can act as announcer, share the news, write articles, follow the careers of legends. Not many people get the chance to connect with a horse or a sport the way I have with racing. But those who have they know what I'm talking about. Watching races of horses whom I've fallen in love with has given me an outlet for my emotions. I get a sense of pride and hope watching them. Watching the horses run is beautiful to me...maybe it's my envy that I can't run like that.

I've been able to meet some of the best people in the world through horse racing including three of my best friends and many other people who follow a fan page that I run on Facebook. Through them I've been able to learn so much and get so much more experience then I ever thought I would.

I've been blessed to watch two talented horses run: Zenyatta and Princess of Sylmar. Queen Z was the first horse to capture me. She sparked something in me. And I think I fell into horse racing because of her. At the time I had just moved and was dealing with introducing people to me and my disability. A thing I didn't have to do before since everyone knew about me. She was a powerful mare. So tall and agile. And to watch her dance up to the starting gate was something I looked forward to each time she ran. The second filly to catch my attention was Princess of Sylmar. This filly is a four year old from Pennsylvania. And a talented one at that. I watched her win the Kentucky Oaks and the Alabama Stakes from the comforts of my living room and she sucked me in. Her charisma and her attitude was so magnetic that you can't help but smile when you see her. Watching her run has gotten me through many pain cycles and new experiences with my Charcot Marie Tooth. She gave me something to look forward to when I was sick and tired and ready to just give up with trying to get stronger.

How could horses do this? I'm not sure....its hard to describe...all I can do is say thank you to the trainers and owners and the horses..

XOXO,

Dana

 

A Zenyatta (the mare) edit that I made:

A Princess of Sylmar edit that I made:

4/19/14 Important Thoughts

Just watched an interview with Robyn Lawley, a "plus" sized model (she's a fantastic blogger too, absolutely adore her!), who has graced the covers of many magazines but is most known for being the covergirl of Vogue Italia's 2011 June issue. Now as I'm watching this interview and she is talking about how she loves her body and the audience is cheering I'm just shocked and disgusted with how "inspirational" this is.
Now that isn't to say that Robyn Lawley herself can't be your inspiration, because she is one of mine. 
It shouldn't be inspirational since it should be something that we feel and understand and realize every day. That we can be more then a size 7 and be beautiful. 

Our society has made it so when a women is of normal height and weight and LOVES herself that is SHOCKING. It shouldn't have to come as a surprise that someone is comfortable with who they are and we shouldn't be in awe that a "plus" sized model loves to eat and loves herself and loves to model and is still on the covers of Vogue. It shouldn because we should all respect and love who are we. Society puts too much pressure on everyone to be skinny that when a healthy women isn't a twig but is still beautiful we find that crazy and almost unbelievable. And THAT isn't healthy.

 

  Robyn Lawley shouldn't be considered a plus sized model when she is 6'2 and is a size 12! That is so sick and so wrong. She is lovely and so strong and so beautiful. She's fierce and no one should have to feel that they need to be "skinny" to be beautiful. I agree what she said in an interview with 'Clique'"I don't think anyone should be called plus-sized,' she adds. "I think it's derogatory to anyone-it's a label.' "I'm a model; I don't think I need 'plus-sized' in front of it."  

    We need more Robyn Lawley's to be covergirls. Not because she is inspirational, but because we are not all sticks. She a healthy women. A strong activist in not being 'plus sized', but being the right weight for your own body.

 

   And it almost seems hypocritical coming from me; someone who struggles so much with the loving herself in her own skin no matter how many times she is told that she is beautiful, because our minds are filled with the ideals that we are suppose to be perfect and smart and beautiful and be able to juggle so many things at once. I'm probably not the best example of loving myself. And I wonder if I ever will be. But I can try. I'll say it, even though I have a hard time believing myself sometimes, WE DO NOT NEED TO FEEL LIKE TRASH BECAUSE WE DO NOT THE BODY THAT IS DEEMED 'BEAUTIFUL'.

 

Anyway....those are just my thoughts on this matter.

 

XOXO,

Dana

 

 

The lovely Robyn Lawley!

 

PS: Check out her food blog for some great recipe ideas

http://robynlawleyeats.tumblr.com/

What Happened to You?!

   Oh boy..how many times do I get this question? I really don't have a problem when people ask me why I'm in a wheelchair, why I'm wearing leg braces, or if I'm using my walker, but once I've answered the question more then five times it begins to get old. I have two main problems with people asking questions: 1) The way they phrase the question 2) The assumptions that people make about me.

   People tend to be curious. That's human nature. But people can be rude as all get out. The way they ask and the timing is often not ideal. I mean you really wouldn't believe how appalling this questions can be.

Examples:

• Dude....what's wrong with your legs?
• Are those shin guards (my leg braces)?
• So when did you get in a car accident?
• What did you break/tear/injure?

   Crazy right? Like I said, I am open to people asking questions as long as they're phrased in a way that is respectful and the time is appropriate. I mean obviously while I'm about to go to lunch and I'm trying to beat the crowd of kids to the café it's probably not the best time to sit down and talk to you about my CMT. I've had an experience in 7th grade with something along the lines of the previous statement. A boy stopped me in the hall and asked why I was in a wheelchair and when I told him my reasons for wanting to get to the cafeteria he gave me an irritated expression and said "So are you just too lazy to get up and walk?"

   Yeah...I had the same jaw dropping reaction. But just as I've had people who are rude I've met people who phrased the question in a great way. I remember at my junior high school there was a girl (who is now a good friend) who said "May I ask what your disability is?" And at that moment I had my service dog with me and had been talking about my CMT with a couple other students. See perfect time and place!

   My second problem is the assumptions that people come up with either about me or my life. It's one thing if you're a child (under the age of lets say 9 or 10) and you ask me if I was in a car accident, but if you're fifty five don't ask me that. There are many reasons that people are in wheelchairs and people who have a chronic illness or disability often take offense when people make assumptions.
 
   There have also been times if someone is rude to me asks what's wrong with me and I've said "OH! A shark bit my spinal cord" (I live in Texas so it's safe that I won't get attacked by a shark) or something crazy. Most of the time I tell the truth, but I like to play with people who are already so rude or so ready to believe something before getting the truth.  This "Oh I know what happened to her" type of thinking sometimes leads to people who believe that they know more about the disability then I do or I'm lying, my disability doesn't exist, and/or that it isn't possible.

   Another one is that because my legs are messed up it must mean that there's something wrong with my brain. Aha that's where you're wrong. I'm actually pretty darn smart. I'm a freshmen in highschool and manage to finish my homeschooling by 2:00 each day (starting at 10 and factoring in lunch). I love to read and I love to learn. I don't need you to yell at me while you talk or slow down and be all sugar sweet to me. I hate that. That lack of sincerity in conversations or the pity talk (you guys who have disabilities or know someone with a disability know what I'm talking about).

   People also assume that just because I'm 'handicapped' that I'm not happy or that I'm living some incredible, inspirational life...which (I hate to crush your dreams) I'm not. I'm living a life that has ups and downs, a lot of downs, but those bad things are balanced out by the people I choose to be surrounded by. When I go to the mall in my wheelchair I'm not doing anything "exceptional" it's just what I do. I have always done this. I'm not being rude, I'm just trying to be truthful. Don't assume that everyone in a wheelchair/have a disability always mope around at home (which sometimes I do) because they don't have a "normal life" or that they are always happy and love getting people inspired (which we don't always like or are).

   We are people. We have feelings. So please when you ask a question about me or my disability be kind and be ready to keep an open mind.

XOXO,
Dana
                                                                                                                                                

P&G Tough Love

P&G released a commercial called "Tough Love", another tribute of their Thank You Mom campaign. First I'd like to start off by saying thank you to P&G for making such a touching and appropriate video. Second I'd like to thank my Momma who made me tougher and stronger.

    This commercial starts off by showing a mother pulling out a wheelchair for her young son and the first words are "You could have protected me." At first I was confused and automatically put my guard up. I'm not sure how familiar y'all are with how people with disabilities are usually shown in America, but it is more often then not it is very disrespectful; portraying us as weak or 'Inspirational (I've previously written about this).
    But as I watched my heart beat faster, I got goosebumps, and I started to tear up. This is the first commercial that I've ever seen that is dedicated solely to the Paralympic games that was made in the US (Coke's commercial included Paralympics but focused more on the regular Olympics). If you take a look at how the Paralympic athletes were shown in the 2012 Paralympic Games in London you would've noticed that there were banners, signs, and tons of press following those athletes around...just like the Olympic athletes. But then you look at America...whose (at least from what I've seen) never made an effort to show us any support. It sickens me when I have to explain what the Paralympics are. I shouldn't have to. Just as the announcer in the opening ceremony in 2012 said "Paralympics mean parallel to the Olympics."
   
    This commercial  shows people with "disabilities" (still hate saying that word...but OK...) in a light that isn't very popular. It showed us as people with strength and confidence. It showed the reason we've grown into the people that we are today; our mothers and fathers..

Thank you P&G. Thank you for giving us a voice. A stronger voice. A voice that is louder then anything. A voice that wants nothing more then to be heard. Thank you.

XOXO
Dana

The video link- http://www.youtube.com/watch?feature=trueview-instream&v=7RR-r2n5DLw#aid=P6pV0Bq4-_A

Struggle

   Many people struggle through many different situations. One of mine (trust me there are a ton) is my undying, unfading want and need to get stronger and feel healthier. But with CMT that can be hard. It is a neuropathy that weakens my nerves and effects my muscles as well. This adds to the fatigue that one would normally feel when they work out.

   I swim competitively. At least I did until November of 2013 when I decided to start homeschooling. I still train to keep in shape and to get rid of stress. The pool and the gym are two places where I can actually think. But as I exercise and I get stronger, I run into a problematic cycle: For about one or two weeks I can feel my body get stronger, but then a drastic change in weather screws with my legs making them so tired that I can't walk or I get a bout of my leg pains for maybe a couple days or weeks. After the pain is gone however I am back at square one or even farther behind then I started.

   I often come across as a strong, brave person. Someone who has grown up facing obstacles and so people sometimes forget that I am human. I am weak. I bleed. I cry. I want to give up.

   I have days where I wonder "Why the heck am I even trying to walk a mile on this treadmill? What's the point? I'm just going to break again and all this work and sweat, and tears will be for nothing." I am told "take it slow" and "you'll get the hang of it" and "Dana, you are so strong". But those are just words. Just phrases that people can easily say and think of. It's harder for me to believe no matter how much you mean it. It's hard for me to believe it because for 15 years my body has rejected me. It has hated me. I have been beaten down by my own body. My legs that turn on me at the worst times.

    But I can't just throw down the towel, lay down on the floor, and cry. That's why despite the struggles and the pains that I get for exercising and forcing my body to get stronger, I'm going to try. I guess I have to. I mean....I've come this far right? I'm not sure how it's going to work out; I could very well die trying (you know falling off the treadmill, legs giving out in all...that was a joke people. Laugh).

  

                        Until then

XOXO,
Dana

I Don't Want to Be Your Hero!

"You're such an inspiration."
"You're so brave!"
"Bless your heart!"
"You are my hero, you're such a beautiful girl on the inside!"

It's not that I don't mind 'inspiring you' to go out and donate $10,0000 to a random charity or to run that 10k, it's not that I don't mind making your day better with my 'bravery'. But I don't see my life as being any more "inspiring" then yours. I'm sorry, but my life is BORING. It really is. I like laying on my bed in sweats and eating popcorn while I watch CSI New York. I mean that is the extent of my typical Friday night.

Though, what really gets under my skin is when people say "I'm sorry you have to go through that, but God is going to use that to do AMAZING things in your life! You're a hero/inspiration for so many people going through hard times! You just have to push through it! Persevere!".....gah.

I am a Christian. I believe that God has a plan for me and that my CMT is somehow involved with that plan. That part doesn't bother me. 

The part that bothers me is when they say that like that is going to make me feel any better. That it will make the MD become less painful or that is the answer to every problem I face. As if saying those words will stop the teasing or pity talk.

Personally I didn't sign up to be your 'hero' when I was diagnosed. It isn't my mission in life.

This isn't to say that I don't like to share my story, I love to, and maybe that's why I've become that for people. But understand my friends that I'm not perfect, I'm not anything special compared to other people.