Monday, July 22, 2013

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

Tuesday, July 9, 2013

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

Saturday, July 6, 2013

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: