Tag: chronic-illness

Disability

COFFEE WITH GOD (WK 2 01/12)

OUR BEAUTIFUL CHALLENGES

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

OUR BEAUTIFUL CHALLENGES

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.

Disability

WHAT IS INTERNAL ABLESIM

OUR BEAUTIFUL CHALLENGES

Now that I have discovered what ableism is and how it relates to my life, let us break down what internal ableism is. A  person consciously or unconsciously believes in harmful messages they heard about their disability and applies themself.

I can think of internal ableism in two ways. Internal ableism is what people have put upon you,  saying you can’t do this or that in life and questioning if you can do something. Then there is the internal ableism you place upon yourself about what you think about the community you belong to.

First, let’s take the internal ableism that people place upon you. My PCA said I was slacking off on my activities and more tired. Then she asked if I could live on my own. When she said this, it upset me. I didn’t want to tell her at the time, but I felt she was ableislizing me and making me think that I wasn’t capable when I had been living on my own for almost three years and the first year and a half was all on my own because of the pandemic. 

She watched videos of others with CP and felt like I was not as independent or pushing myself as much as they were. It is hard for anyone to understand that no CPs are alike and that everyone with CP has their limits and internal ways of pushing themselves. 

I have been fighting this all my life. For many years, I have internalized these assumptions put upon me about having a disability and cerebral palsy.

At this point in my life, I shouldn’t feel this way or let other people make me feel this way.

Now, to the internal ableism that I placed upon myself.

For many years, I was scared of my disability and socializing with anyone in the cerebral palsy community. If I associated with others in the cerebral palsy community, I might not have internalized my fear of the cerebral palsy community as much as I did.

When I was very young and going for physical therapy at the rehab center, feeling if I went near others with more involved CP than I had, I would somehow catch their CP. Growing up, I had a group of friends with disabilities, and I was okay with them.  

As I got older, the internal ableism about myself and CP only grew more aggressive. I was in college, and others with CP would come up to me and want to be friends or ask me on a date; however, I would just run the other way, not wanting to have anything to day with another person with CP. I would make every excuse to say I didn’t want to get to know the person. When the truth was, I wasn’t comfortable with who I was, a person with a disability.

The way I felt about myself and my disability was just getting worse over time. Family and friends would say I should change my outlook on my disability, or else I  would not get anywhere. 

It wasn’t until I got hit with an unwanted disability. At 35, I ended up with PsA (Psoratic Arthritis). When you are born with a disability such as CP, you hope you don’t have any more challenges with your health, but unfortunately, when you have one disability, it doesn’t stop you from getting other health issues. When I developed PsA, I wasn’t sure where my life was going.  

One night,  I was at a fork in the road; if I didn’t pick up my life, I would not return from a dark place.  Looking at my two disabilities now, I needed to accept one. I knew the PsA would go away at some point, but the CP was, is, and will always be a part of me. That night, I began my journey to discovering who I was with CP. 

After many years of internal ableism, my disability I taught myself that just because my disability makes me seen as different, my disability and what people say or think about me shouldn’t stop me from being who I need and want to be.