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.

Soooo Relatable: Pictures

 Don't let your kids grow ignorant.

 Talk to me, I'm awkward, but I love to meet people.

 Remember: CMT is progressive, sometimes I'm in my chair and other times I'm not.

 I want kids, sure they might have CMT, but they will be perfect.

 And yes....sometimes I wish I didn't have CMT.

 These women are among my inspirations...I love Push Girls

 Mallory Weggemann is another one of my inspirations. She's a swimmer just like me!

Bravery

This was an assignment for my ASL class: I was suppose to write an essay about a handicap in my life....and this is the finished product.

Bravery

Despite the normal appearances of life, things aren't always what they seem. Manhattan looks clean and beautiful until you walk the streets. Poison ivy is normal and harmless until it touches your skin. That's probably the most appropriate way to describe my crazy life. My “handicap” is more obvious than others, but at the same time you might not notice it right away. I was four when I was diagnosed with a form of Muscular Dystrophy called Charcot Marie Tooth disease. A neurological disorder that wears away the coating of my nerves and weakens my muscles in my hands and legs.

Growing up I was poked and prodded, had blood taken and nerve testings. I had physical therapy and countless different types of leg braces and boots that helped keep my feet straight and helped me walk. After a while the doctor appointments stopped, but the therapy sessions kept going and the braces continued to change over time and improved. And even though those trips to the doctor ended I was still self conscious about my legs and by how much they held me back from doing what I love to do.

At first I didn't realize how much my life had to revolve around my legs, but when I was around twelve or thirteen that's when I starts to see how my life needed to be. That was when I started to get weaker and the pain came on more intense and more often. I started having to take medicine that was suppose to prevent my legs from hurting, I had to start making arrangements for my wheelchair when we went places, and I started to miss more school causing me to work twice as hard as anybody else to keep up with the work. Worst of all my disability started to take away my passion that I've had for so many years: swimming. It had started to affect the way that I am able to swim and when I'll be able to swim. If the water is too cold my nerves ache and I can't function in the water as well as the other competition next to me. If my legs are shaking I can't dive off the starting block properly and I loose speed.

But my active life wasn't the only thing that really began to change over the last couple years. The way I see myself has changed. Being in a wheelchair comes with the stigma of being “retarded” or “ugly”. Being beautiful and being in a wheelchair aren't usually thought of in the same sentence and rarely is a person in a wheelchair thought of being able to contribute to society. Despite people telling me “I'm beautiful and have a great gift” and “opportunity to share my story with people”, I struggle with accepting who I am, because I long to feel accepted by the other people around me. I'm a people pleaser. But I can't change the fact that I walk more clumsily and awkwardly, I can't change the way I have to dress to avoid my legs getting cold and clenching up, and I can't change the way my leg braces look. Add those things with the added pressure of being beautiful in society's eyes and it's really a battle I can't win.

This year I'm still struggling with how I look and I know that I'll always struggle finding confidence in my wheelchair and when I use my leg braces. I will always have my disability and as much as I wish I could be like Forrest Gump and run right out of my leg braces, that will never happen. One of my favorite quotes is from a woman in a wheelchair, “We may be confined in our wheelchairs, but we are not defined by them.” There are people in my life, my family and friends who push me to be my best and not to sit around a grieve for the things I don't have. There are people in my life, paralympic athletes like Mallory Weggemann a swimmer, who gives me inspiration and a goal to reach each day. Then there is my God who is my courage and my strength, and without whom I don't think I would still be here, because He is the one who gives me a hope. He is the reason I can sleep in peace and keep going because I know I have a future.

So everyday I get up, I get dressed, live my life to my fullest. I go to swim practice and embrace the way I feel in the water. I am weightless and free, I am not confined in my chair or by my leg braces. I go to school and do my work. I have plans for college and I know what I want to do when I leave college. I want to fall in love and get married. And I know I want a family, despite the statistics and the people who don't think I should have children.

Mallory Weggemann summed up how I feel when she spoke at a conference and this is the perfect way to say what we need to hear. “For nearly six years I have been classified as an individual with a 'physical disability'. However, I feel that everybody has a disability of some sort. Mine is evident...but we all have something that holds us back. Whether that is physical, mental, emotional, spiritual, or financial. And the list goes on. But where I believe bravery steps in is when we choose, regardless of our disability and regardless of circumstance, that we are going to rise above and we are going to push forward. We are going to chase our dreams and we are not going to let it stop us.”

We all have something that hinders us. Growing up I was surrounded with people who had mental handicaps or people who, like me, had physical handicaps. But I was and still am surrounded by people who have different types of handicaps. They aren't as obvious as mine, but they are there. Regardless of where we have been we all have something that we need to overcome in our life. These “disabilities” and these “handicaps” are what make us who we are. They make us brave.

Love With Four Legs and a Tail

**Serious topic about to take place. This is an important and hopefully informing piece.**


                 Love With Four Legs and A Tail

        
In the world of people with disabilities most of us hold something in common. We have relied on someone at one point to help us get around; whether that be by getting dressed in the mornings to a doctor telling us what to do after an injury. Actually every body in the world has at one point had help from someone else.
      For me my life really changed two years ago in November when I was contacted to fly to California. I was finally getting my service dog. Canine Companions for Independence has been gifting people with disabilities service dogs for many years and it's because of them that I have met many people who have touched my life in so many ways. One of the those people, well dogs, is my yellow lab/golden retrieve mix, Danika.
    I often get the question "What does Danika do for you?"; well to answer plainly, Danika is my assistance dog. She picks things up off the floor for me, opens doors {literally and not}, closes them, turns on and off the lights, can tug my wheelchair when my arms get too tired for me to walk. She also will lay on top of my legs when they become tense or start to hurt from my form of Muscular Dystrophy. But most of all Danika is my companion. She is one of the only people who I can trust with my silent tears at night, whether they are falling from physical pain or from memories. She is there when I need a warm welcome, a hug and a kiss, or just someone to watch t.v with when I'm not able to go to school. I know that she won't leave me because I am different or need a wheelchair. I know she's here for keeps. She is my perfect and stable thing in my crazy world. And without her I'm not sure what I'd do.
     Today, before I even decided to write a post, I read an article online about people using fake service dog vests to get their pets into stores or restaurants. Right away this struck a nerve. I am entitled to my own opinion and will now voice it:
 
   People who use fake vests or claim that a snake, hamster, or bird is a service animal to be able to bring them to public places either-

A) Don't understand why service dogs are so important

or B) Are too ignorant to learn and respect people with disabilities

I understand that animals are a great way to cope with stress, that horses are used every day for therapies and they are amazing. I personally have used horses at my camp for disabilities and they are just great to have around. But a service animal should be able to do more then just be there for therapies or to distress.

Service dogs are not just "special dogs that get to go places". They are life changing canines that work hard for their people. Many of my friends have seen "service dogs" out in public who bark at people who walk by or relieve themselves wherever they want to. Real service dogs are trained not to do that. They are trained to be quiet and still. They don't bark at strangers or go to the restroom on the floors of restaurants. Also handlers of service dogs should not be scared or hesitant about showing managers or airport staff their cards the certify their dogs as legit service dogs.

Many people also don't realize that by pretending to have a service dog and then causing a scene with their fake service dogs; creates  problems for legit service dog owners.
  We are seen as nuisances or pests. It also makes owners of establishments, managers, and staff members question whether we really do need our dogs. Please notice that your actions do cause a certain light to fall on us.

And on a last note, what is worse then people doing this is : there are no consequences. They don't get in trouble for their actions. They get away with this horrible and selfish crime. And that's not alright. It shouldn't be brushed off because it's just a minority group of people who suffer. Look around and open your eyes to the reality.  


Links -

CCI.org (Here you can sign a petition to stop the selling or fake service dog vests and explore the site)

 (My Momma, Danika, and I two years ago at the CCI facility in California. This is our first group photo together after she got assigned to me officially.)

Stranger Stares and Whispered Conversations

I remember the first day I took in my wheelchair during middle school. I was so uncomfortable because no one had even known about my CMT up until then and I knew that I would be stared at and whispered about. And I was right. I did get looks, questions, snide comments, eye rolls, and I could tell that people in my classes and in the hallways were whispering about me. 
    I had people call me:

•  cripple,
• disabled,
• different,
•  "wheelchair girl",

And many others that crack my protective shell I put up. I also got stared at quite a bit. Those stares include, but aren't limited to-

•  the "pity" stare,
• the "poor baby" stare,
• the "can't believe she's taking so long" stare,
• the "hurry up" look,
• and the "she's a burden, but we can't tell her that" look.

    But it's not just at school that I  get these comments or looks. I see this at stores when I drop something or am trying to maneuver my chair and grab things off the shelf. I see it at resturants when I can't figure out what to do with my wheelchair because there isn't enough room to turn around or there isn't enough space for my chair to fit comfortably without being in the way. I see it when I go out to the mall with my friends and am looking at really cute clothes.
    My Mom always gives me about 4-7 days to recover from my leg pains {depending on how bad the cycle of pain was} before I go back to school. Within this time I'm home I work on homework, try to relax my legs to help the pain go away, and watch countless episodes of Gilmore Girls and Law and Order. But as the week goes on and I know I'll be going back to school in my wheelchair I get nervous. Not nervous like "about to go on a rollercoaster nervous" or "about to go sing on stage" nervous. I'm talking about "crying, shaking, panic attack" nervous. Because I knew that I'd have to put up with jerks who have no sense of tack, people who asks tons of questions {which I love, but when I'm trying to work on my math paper or trying to get to the cafeteria the time isn't ideal}, those who think they know more about my disability then I do, and the endless amount of non-handicap accessible places in my school {i.e bathroom and the elevator that constantly breaks}.
   I reached a low in my life where I started to pity myself....I pitied myself because I can't do the things I used to be able to do with ease. I need help getting things down from a high shelf, I rely on my friends to help me get my lunch from the lunch lady because the counter is too high up, and I take much longer to write my English assignments down.
    I finally stopped when I realized how lucky I am to even be able to move myself from my bed to my wheelchair or how I can feed myself. I hated that I was full of pity. I had no right to be upset with the world, because even if I can't change the situation, I can change my outlook.
   I think I've figured out what has made me so uncomfortable about being in my wheelchair. It's the fact that people insinuate that because I'm in a wheelchair that I am a helpless creature. And by seeing the pity in their eyes it causes me to see that weakness in myself....but I'm not weak. Their beliefs and thoughts don't reflect who I am, they reflect who they are. Their beliefs reflect their own insecurities, naiveté, and incompetence.
   It's not up to me to be their judge or to sneer at their mistakes, it's a chance for me to teach someone...and maybe, just maybe I can change their outlook and by extension change the way someone in my situation sees themselves.

Hope you have an amazing week!

-Dana

Songs:
It's Your Life: Francesca Battistelli
Praise You in This Storm: Casting Crowns

Airports....oh boy....

****WARNING: Rant/Thoughts ahead***

So for the last three weeks I've been visiting my friends and family in Washington State for the first time in about 2 years. I really enjoy going to see them and catch up. But what I don't care for is going to the airport and boarding the planes...that's a stressful event for anyone who is flying. But when you're in a wheelchair, have a service dog, and all your carry on items it becomes 10x more stressful then it needs to be.
      First off when you are parking in the DFW parking lot there are no ramps or elevators in the parking garage.....which is a problem for someone who is in a wheelchair....how am I suppose to get down the stairs people!?!?! That's a safety issue {#1}They are two flights of stairs on the second floor of the parking garage. I know that you could park on the parking lot not in the garage, but that's a pretty small lot which means that all the spots are taken, so your only option is to park in the garage. There are no ramps to get up onto the sidewalks that are placed in the garage so you're not walking in the middle of the road...safety issue #2.
     Once and if you manage to get to the building you have to squeeze through the really tight area of space that is the airport. Which I understand, because it's an airport and you're busy..but then there's a problem that you would assume wouldn't exist.: People don't move out of you way. {Insert sigh of frustration here} You need to move. If there is a person carrying a leash, her luggage, and pushing herself in a wheelchair trying and trying to get to baggage check and then to security don't expect them to be the ones that move out of the way. Is that asking too much? Don't think so.

For me I have an added place I need to go to. I have to make sure my service dog, Danika {who rides on the plane with us} is able to go to the bathroom before we leave. Which means that we plan what time we get to the airport and through security based the time Danika can not use the restroom. She can generally not use the restroom for 4-5 hours, which is hard when the plan ride is 4 hours long without delay {from TX to WA}. So when we do hit a delay {which has happened} we can't take her outside....because if we do we have to go through security all over again. How could you solve this problem? Be like airports in LA and Seattle where there is actually a relief station for dogs who ride on the planes. That would be a blessing to every person who has a service dog and needs  to take them to the restroom before a lay over flight or if there is a delay. Instead of making them go down the elevator, all the way across the other end of the airport, through security, and outside....

      For me getting through security isn't too much of a problem, the workers are generally really nice and understanding, but it does take a really long time to take off and put on my shoes, take out my computer and remove my jacket, put them into the container {and get the container through the sea of people}, and then go through the metal detector, and then put everything back on or away. And all of this time, when I've dropped the same thing time after again, it would be nice for someone to offer to help. I know that they don't want to seem to pushy or interfere with me, because they're scared or something, but if I do really seem to be struggling I would LOVE some help (just throwing that out there).
       Once you get through the security and get to the waiting spot it's all good, at least on my part, because the flight attendants really help out with getting you seated and figuring out what you need to do.
***End of rant***    
 All is going fine: until you have to use the restroom..if I couldn't walk I guess you would use the isle chair to get to the restroom, but there isn't any railing or room to move around so you can get your pants back on, at least in my opinion. Which of course you can't do anything about since the plane is tiny. When I do walk I find it really difficult to get to the restroom because I am already unsteady on non moving ground, so when I have turbulence on the plane and are trying to get back to my seat it's hard for me to keep my balance and try to make my legs not give out.
     Once we finally make it to our destination everything is actually pretty easy. The rest of getting situated is really easy, despite heaving the luggage out of the baggage claim {thank God for making Mom and Dads right?}.

Thoughts or opinions, anyone?  I really hope I'm not the only one with these problems because then this rant/explanation would make no sense to anyone else

-Dana

Charcot-Marie-Tooth: What it is, How it works, and How I will with it

Charcot-Marie-Tooth or CMT:

Charcot Marie Tooth {CMT} is a form of Muscular Dystrophy {MD} that effects the nerves in my hands and legs.

• It creates weakness, stiffness, and pain. There are different classifications of CMT, some being very severe and others not as much.
• Charcot-Marie-Tooth never goes away, it's a disease that stays with your for the rest of your life.
• CMT passed down from generation to generation, but with my CMT, my family doesn't know who in my family tree has it.
• I'm the only one in my family to have it so perhaps it's starting with me.

         My CMT has progressed quite a bit from when I was first diagnosed.  I think for me as a little kid CMT never really existed. It was something that was there, but I lived my life around it. I ran and played just like any other kid, with the exception of falling down and rolling my ankle. I enjoyed my life and didn't have to worry. But as I got older I started to experience pains in my legs that got in the way of me being able to do the things I loved to do. I started taking medication to help with the pain and it did for a while. ...
         Things stayed at the same place, normal and not anything that I couldn't handle. Until we moved to Texas.
        My legs have gotten much weaker as I've gotten older and the pain cycles have come on faster, become more painful, and closer together. I now use a wheelchair a lot of the time when I know I'll be walking a long distance or after I've had a cycle of pain. My CMT has never affected my hands too much when I was younger, but now they tire much quicker. When I hold out my hands straight in front of me they shake as if I'm cold.
       I know I'm lucky to still be able to move and use my legs as much as I do already, but that doesn't mean that I'm use to weakness and pain. I still get nervous about how I'm going to get around when I'm an adult, when I'm at collage. I worry about going to work and about driving. I worry about having a family of my own and how I'm going to be able to hold my kids when my arms are too weak to pick them up.
     But I take it day by day. I have amazing friends who also have forms of MD and are older than me that give me advice and show me how to do things differently. I'm blessed to have been born into a family that cares about me and does everything they can to help me.

-Dana

FAQ {or for the people like me ,who until about 5 days ago, didn't know what this meant, Frequently Asked Questions}

• I have a form of MD {Muscular Dystrophy}, called Charcot Marie Tooth or CMT
• Yes, sometimes I am in a wheelchair because my legs get tired/weak or I have pains which I call "leg pains" {original right?} that keep me off my feet for sometimes weeks and other times only a day
• The leg pains feel the way your feet do when they fall asleep, but magnify that x100 and add burning, stabbing pains, and shooting pains all over my body from the neck down.
• When I'm not in my wheelchair I sometimes use leg braces that go from my knee to my ankle, so no I don't wear shin guards like everyone always thinks I am. Or I'm wearing my cowboy boots because they support my ankles and my legs so I don't trip and they're easy for me to walk in
• I enjoy everything other people enjoy that includes: movies, swimming {my passion}, writing, reading, food, and movies.
• I am not defined by my disability, I do not see myself as disabled.
• I do, however, have FEELINGS and your words do hurt.
• I believe I was chosen to go through my life with CMT because God has something planned for my life and I am trying to embrace it.
• No I don't know everything about my disability or living with a disability, so I am open to advice
• Despite popular belief open to questions if they're asked in a kind way, so if you feel free to comment below in any of my posts and ask! Just keep them kind and polite! I don't bite.

Introduction

~~Hello there~~

    This blog will be full of rants, ideas and thoughts, opinions, problems I've faced, and my journey of growing up with CMT. I've started other blogs in the past and never really kept up with them, but now I'm older and really started to face the "real world" as I'm about to enter High School {insert  scary music and thunder here} and I encounter new people who don't know how to accept me for who I am.

      So  I guess I'll add a list of fun facts here and you can get to know me:

• I was 5 when I was diagnosed with CMT, or Charcot Marie Tooth
• I'm the middle child of a family of 7: Mom, Dad, Older Brother Josh, Older Sister Hannah, and another Brother David
• I'm a total nerd when it comes to super heroes and movies/t.v shows. Especially Disney movies and cop shows
• I LOVE music {country, rock, classics, show music, dubstep/electric (i.e Ellie Goulding)}
• I go to MDA {Muscular Dystrophy  Association}Camp almost every summer and hang out with the coolest people ever
• I have a service dog named Danika {And no, not after the race car driver} or Dani as she's known around the house. I got her from CCI {Canine Companies of Independence} in November of 2011 from California
• I live in Texas although I'm true to my Washington State roots and love the rain and still have pale skin even though I've lived in the South for almost 3 years.
• Jesus Christ is my Lord and Savoir, I believe he died on the cross and rose again. He's impacted my life and is the reason I know I have something great in store for my life in the future.

Anyway, I hope y'all will enjoy my Blog and get to know me, maybe laugh some posts and nod in agreement to others! God bless!

This is me and my younger brother this year: