The Big Hurt

According to some Professors there is one big incident named “The Big Hurt”. This incident is something that will change your life for ever. For many people the “The Big Hurt” is a divorce or the death of a family member. My “The Big Hurt” is a major operation I had almost 8 years ago. Its taken me many years to get over it. It made me angry, but now I understand why it had to happen when it did and how much it helped me. “The Big Hurt” can knock you on you ass but you can get up. Finding the strength to get up is hard, but with good friends and family you can find it.

Chicken legs and lack of butt

I need to explain a little about myself. I’m short with bright blue eyes and hair that can’t decide what color it is (mostly blond). I have red lips that look deep red most of the time but have know to turn blue. I love music but can’t dance, sing or stay in time with the rhythm. I’m addicted to the written word, I love books. While I can’t read everything, I love that books let you be someone else. In a book I got to win a race and dance on stage.

Technology will be the great equalizer for people that have disability. Computers will read to you and type for. They give people the ability to express themselves. They give us a step up a the ability to paint our own picture of are selves that we ant people to see.

Most at Home

Some days I feel that I don’t fit in anywhere. But then I home and at the end of the day I craw into bed. I feel most at home under the blankets, everything falls away and I fit in. At the end of the day it does not matter that I did not fit in that day at night I feel good about the things I have done and the choices I have made.

I’m not perfected by at the end of the day if I feel good about myself that’s all that matters to me. We live and die by are choices. Even in a disagreement if I end the argument with out regretting what I said even it the words are harsh that’s ok, because I made a choice.

I take the stares for the most part even if its hard. I walk all over because I worked hard to be able walk and will not let myself take the easy way out. It’s a slippery slop that leads to blaming others for my problems.

Squirrels

I hate Squirrels, they creep me out. My family lives in an old old house and the squirrels get in our attic. When I was little it scared, to think of them in my walls. Some nights I hear them in my walls to this day. Last year I was chased down the campus by a little squirrel. If freaked me out. At first we were watching it but it kept coming closer. I ran as fast as I could (and I’m not that fast). I ran into a building and a little later Twin told me the squirrel ran up some guys leg. I felt bad for the squirrel because it looked, but I was not very sad.

K and Twin

After my last post I thought it would be good to give a better perspective on my relationships. I have a best friend named K. There was a time in my life where I never thought I would have a friend like her. I have had friends a couple in fact. But I always dreamed of having the kind of friend to talk about everything with and really make a connection with. K walked in to my life just 6 years ago. I never imagined it would be this wonderful to have a friend like her. Our relationship gives me hope for the future, the might fall in love to the guy of my dreams. To K and the future, may the world be blest with such wonderful friends.

Besides K I have another best friend named Twin. She is my identical Twin but also my best friend. She has been with me my whole life. We do allot together and I love most of it. We share many things with one another but a best friend fills something else.

Hanging by a thread

Some times I feel like my CP makes it hard on my relationships (friends or Guys). I try to plan things out so I know what kind of shoes to wear. I don’t like surprise or unexpected its one more thing I have to think about. When my mind is thinking my feet don’t always do what I want. I fall down more when I’m trying to find my way around a new place or when I’m preparing my self for something like an unexpected event (surprise). I have to think of things more than most people when it comes to walking some where. I have to thing about how I’m getting there, what to do if I have to go to the top of a building (what if the elevator is broke). These are the things I have to think about each day. I try not to bring that stuff into my relationships with friends, but at some point it comes up and I know it changes things. This makes things more tenuous when it comes to having friends, that’s why my relationships feel like there hanging by a thread.

My entrance into the world

Our original due date was January 20 and we were born in October. My twin sister and I were born 3months early. I was 2 lbs and 1oz while Twin was 1 lbs and 2 oz. We were both in the NICU for 3months. During this time my leads got infected, my lungs collapsed. As we neared 6months my sister begin sitting up on her own and I did not. This was the first of many clues that my mom told my doctors about before I was diagnosed with Cerebral Palsy. I have had around 8 pairs of AFO’s around 9 sets of casts 2 major surgeries and thousands of hours of PT and OT. I received Early Intervention services and when to a special needs preschool before going main stream with assistance. During all of this I have been on an IFSP or an IEP respectively.

Identity

My disability is not me but it is such a big part of my identity. People have always used my disability to tell my sister and I apart. IT bugs me a little but I try not to let it. People automatically think I’m unfriendly and feel the need to call the elevator and walk away leaving just me at the elevator doors. These are little things and I get over them. Today was a good day. The weather is perfected and I’m finally getting used to university services for people with disabilities. It has take me a good year to understand and use all the things available for people with physical disabilities. If you have a physical disability and are going to collage look for the school with the best services.

The Internet a Dangerous Place

When a person hears about an illness/disability they often run to the internet for answers and hope. I have found it’s a very grin place sometimes and I often find in disappointing. I have looked on the internet from time to time looking for someone like me. A person with CP and have found not much in the way of encouraging information out there. In fact it paints a very bleak picture of a person’s life. It hurts me that some many people feel like CP is a death sentence. I’m glad I did not read that kind of thing when I was younger or I might not b walking today. These are the reason I decided to start a blog. It put a little more hope on to the internet. I love my life even if I can’t win a race.

Laughter

I love to laugh, it makes me feel free. I love to make jokes, I have been accused of having a smile and laugh that people can’t help but love. The best part of my day is when I’m laughing and making jokes. It makes me feel normal and I must confess I never thought that would happen. In my darkest days I would lay in bed and which I could speed up time to a place in my life where I had friends in which I could laugh with. Well now I do and it seems to good to be true. There so many people with CP in the world and just about as many was it cane affect you. There aren’t many people I have meet with CP that are more like me than not. I had the privilege to meet a young man with CP this summer. Even though he uses a wheelchair and I don’t we are pretty similar and its refreshing to be able to talk about stuff or just have someone who gets it. He has a huge grin from ear to ear that made me instantly want to talk to him. We have been corresponding all summer and its been wonderful. I look for his letters and find my self enjoying talk about school. I hope I’m not misleading you, he and I are just friends and I’m grateful. For anyone out there who has CP recognize your own dreams and reach for them, you never know what you will learn about your self.

Refection

My best friend K once told me “It's hard for people to see themselves clearly. it's like looking into a mirror w/o your glasses on: everything is foggy and it's hard to see straight. friends are like glasses. they put everything into focus.” I had no idea she was so smart. Sometimes I worry that people only see my disability and who I really am. Its had for me to see what my friends think of me because I tend to look at things in a understated way. Every body wants to be recognized for the things they do, but not how they accomplish them. People will often say to me “ Your really great!” Well am I great because I did something in portent or am I great because I have a disability and I did some normal everyday activity. I want to be know for being funny and having a great scene of humor not because I walked down the street with out falling on my face. (I have done that allot) I’m torn because when I make it to a class with out tripping or stumbling down the sidewalk I feel accomplished and so very pleased I got my legs to do what I want then to do, but I don’t want other people to do that to me. There is nothing more embarrassing than walking to class and having complete strangers ask if I’m ok.

Twins

What is it like to be a twin? I get asked that all the time and my reply is its all I have ever known. This is true my twin and I have always been together. We do many things together but we do many things on our own as well. I love to read and write and Twin likes math and science. Truth: being a twin is frustrating, crazy and wonderful. I have a ready made friend and some to share my fears with. The problem is we get on each others nerves and don’t always know when to distance out selves before we fight. I love her and I know she loves me. So this year I’m working on doing things on our own. This year if your lucky you might get to see me doing water Aerobics.

Its me isn’t it……..

Its me isn’t it……..

Little about:

I’m a collage student living in the flat part of Ohio. I have CP (Cerebral palsy) but an able to walk. I have a twin sister and a whole cast of crazy characters.

My Twin sister aka Twin
My Best Friend aka K
Twins Roommate aka Cole
My Younger Brother aka CSO

I try to advocate for my self and others with disabilities, but mostly I live each day trying to be positive about live and taking joy in the little things that make a day great.