Disability

WHAT I’M NOT

What I am not is the first thing you see.

What I am not is the six legs I used to walk around. 

What I am not is the handlebars I hold onto. 

What I am not is what you see when I walk into a room. 

What I am not is the way you see me on the outside. 

What I am is a person who is just like you. 

What I am is someone with self-worth.

What I am is someone with intelligence. 

What I am is someone with dreams.

What I am is someone with hopes.

What I am not like another person with a disability that you know

What I am not is the label that I was born with 

What I am not is your inspiration 

What I am not the only person in the room with a walker.

What I am not is taking up space in life.

What I am not is letting my disability stop me. 

What I am not is letting my disability affect how I live life.

What I am not is allowing myself to give up on myself.

What I am not is letting my challenges get in my way.

What I am not is letting my fears get in the way. 

What I am is a creative person.

What I am is someone who gives love.

What I am is someone who receives love.

What I am is someone who loves life.

What I am is what you see, what you see me. That is what is called judging what you are visiting in your eyes. When you judge with your eyes, you miss out on life because life is much more than what you see on the outside. When you remove the walker and the disability, all that is life is a person just like you. 

Disability

COFFEE WITH GOD (WK 2 01/12)

Dear GOD,

I tried to write to you every Sunday last year, but it didn’t last long. This year, I want to write to you. I have two goals: To get myself healthy and not rely too much on people. I gained a lot of weight, and it affected my independence. I take so much pride in my independence and don’t want to give it up because I can’t keep my mouth shut from eating. I’m not calling upon you because I feel we have that connection yet. If I did call upon you, I would feel I was using you as a 911 button. I fell. 

Second, I would like to have a relationship with you so that when I feel like I need to call upon you, I won’t feel awkward. You don’t judge anyone, but I still judge myself when I feel as if I want to ask you something. For me, it feels as if I’m asking someone I don’t know for money.  A few years ago, I started this program. A lot of it is based on spirituality. I know spirituality and that you are two different things, but you do go hand in hand most of the time. The program has all kinds of people with disabilities. My biggest why is that people with disabilities believe in you and trust in you so much. My mom told me once that people need someone to cling to and gest your it. I just don’t that way. I was born this way for a reason I may not know what that reason is but that ok. It took me very long time to know who I am. There have been parts of me that I haven’t like because of my disability. It was challeging for me to see that when empowered my disability not only did my disability win I won to. For me it wasn’t about believing in you it was about believing in myself.

Did you help me believe in myself? Maybe, but I won’t give you all the credit.

Until next week. 

Thank You,

Marie

Disability

THE FRUSTRAD BODY

I have been figuring out a way to write about this. What I call “the frustrated body” is hard to explain if you don’t live in one. Okay, everyone has a frustrating body at some point, though. Even a person without a disability could be accident-prone, have aches and pains, or find they can’t do everything they want. My mom had a stroke about 16 years ago, and while she was recovering, she would ask me how to get dressed. I would tell her it’s automatic; I just do it. But she had to relearn, which was frustrating for her. I don’t get frustrated that I can’t drive a car, I just know what I can do and focus on that. 

For people born with cerebral palsy or other neurological disorders, having a frustrating body is part of life. We adapt and see it as our everyday routine. Then, some people might acquire neuro-muscular disorders such as MS, Parkinson’s, stroke, and as a result of a TBI (traumatic brain injury). It wasn’t until I started dating my boyfriend that I began to see how living with a disability from birth is so different than acquiring a disability. He still remembers the able body he was born with, but my body is my version of able because it’s all I know.

When someone has a neurological disorder from birth, such as cerebral palsy, as I have, we don’t mourn for a body we used to have. We’re so busy focusing on how to use the body we do have. 

I observe what it is like for others to have an able body, yet in my eyes, my body is able, just a different kind that none understand unless you know what it’s like to be born with a disability. Even then, each person who has been born disabled carries themselves differently. Some will not let their disability get the best of them, while others feel that because they have a disability, they don’t know or can’t see how to live their life with a disability. So they just don’t try.

Therefore, the level of frustration we feel is different because we have a different baseline.

I chose to go beyond my disability. I know it can be challenging to go beyond your limitations, but I was given a life and want to make the most of it while I have a chance. As I get older, my body will be more taken over by my disability. I’ll experience the same age-related conditions that everyone experiences at my age, like arthritis, osteoporosis, and general aches and pains. I may experience these earlier than most. But with CP, there’s no way to predict how much more my body will be impacted, and it may not respond to the same treatments.

My message to those born with disabilities and to those who acquired one and are still grieving the life they once had is that life is still a gift. A body is better than no body, and you can learn to adapt. To those born with disabilities, you can educate those who acquire disabilities. Show them that they can still enjoy life because you’re also enjoying life. A little perspective is an exercise we can all do… along with the medicine we take.

We can focus our minds on the positive. That’s a choice we have each day. There are lots of options, like meditation, journaling, exercise as much as you can, getting fresh air, and working with what you can do.