I am free (2)

Acceptance, my key to freedom. (PART 2 of 4)

This is a translation of the blog originally written in Afrikaans at https://wordpress.com/post/mysilentvoice.blog/427

My acceptance of myself was an important step on my path to Freedom from my prison of anxiety and fear.

I had to fight a lot with this.

My life is not easy. I will always have to fight a battle to be heard and accepted. None of that has changed. I’m also far from giving up the fight to let my voice, and others like me ‘s voices, be heard,

but my heart is calm about my past and my way forward.

My acceptance of myself would not have been possible without:

1.         Faith

I had to believe, even if I didn’t see, or even hoped anymore for, in a good life being possible with my body and my life as it was and is. I see now I didn’t believe in it for nothing, God provided. With all my flaws and all, God loves me. He considers me worthy enough to do His work, to carry out His message, even if I am without voice. How can this not make someone feel good enough?

2.         Communication

Communication has completely changed my life. Without it, my life was really very bad.

It’s about so much more than being able to say I’m hungry/thirsty. Without communication, I couldn’t go to school either and no one knew or understood me. I was bitterly lonely even though I was in a school. Now that I can communicate, my life is so different.

Because I can communicate, my loneliness is no longer my only friend.

My words allow me to introduce myself to others and make me known to people. Because people now get to know me for my brain and my heart, there are actually people who like me.

A very important joy that communication has brought me is that I can “talk” about my feelings. It’s as if a door opens when I can tell my mommy what’s bothering me and why my body reacts the way he does. My heart calms down almost immediately when we talk about things, because without communication it’s like we’re both like a balloon being blown up until we explode at some point. This part of communication is probably one of the biggest contributions to my Freedom from anxiety and fear.

3.         Knowledge about why my body works the way it works

Since starting S2C (Spelling to Communicate), we’ve learned so much. Besides being able to communicate, the most important thing we’ve learned is why my body works the way it works, and why my body doesn’t want to work the way I want him to work.

My body is not obviously disabled. I have all my body parts. All my body parts can do what they are supposed to be able to do. But the pathways from my brain to my body’s parts, (which I have to use to get the parts, I have, to move or perform movements with), are disabled. That’s why I can’t speak, even though I have all the parts one needs to be able to form speech with. My brain doesn’t get my speech producing parts moving to form speech. To form speech, there are many parts that need to move together.

This disability is not only limited to my speech, but also all over my body. That’s why I can’t perform movements that I want to or plan to perform. On top of it all, the messages to my body parts gets mixed up as well.  

So,

I hear what people are saying,

I understand what someone is saying,

I know how I want to react,

I want to respond,

but I don’t get my body to do what I want it to do.

It therefore happens that I would e.g. walk while I would rather sit down, or the other way around.

To get my body to perform the movements I want him to do, I have to deliberately and purposefully train my brain and my body to work together to get my body and my brain to engrave that combination of brain pathways and movements so that it eventually automatically falls into place when I want to use it. This is easier said than done. Practicing a simple movement like this sometimes can take months or even years. It’s super frustrating.

My emotions can also throw a spanner in the works with this process – good or bad emotions can equally hamper my work on my body.

My body can also form bad paths and get stuck in patterns. That’s why I’m so struggling to stop doing certain bad habits, e.g., picking my nose. Most of these habits are too bad or shameful to even mention here and are something I’m very ashamed of and really don’t want to do. Unfortunately, those paths have been engraved in my brain already and it is very difficult to get them erased again. It always amazes me how easily bad paths form and how much effort I must make to form good paths. However, I also understand that it’s about different parts of my brain that I use.

I’m not going to explain further about this right now, because what I actually want to say is: I UNDERSTAND WHY MY BODY DOES WHAT IT DOES AND WHY IT DOESN’T DO WHAT I WANT IT TO DO. Understanding this, enables me to accept my inabilities, make peace with my disability, and learn to live with it. Before I knew why my body is so difficult to control, it made me very depressed and anxious. Now that I understand why my body doesn’t work like other people’s, I’m much calmer about it and when I’m calm, I can actually get more done with my body.

TO BE CONTINUED