I am free (3)

Acceptance, my key to freedom. (PART 3 of 4)

This is a translation of the blog originally written in Afrikaans at https://wordpress.com/post/mysilentvoice.blog/443

My acceptance of myself would not have been possible without:

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

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.

4.         My own ability to make my body function better by using my knowledge and making plans:

Because I now know how my body works, I was able to process the information in my brain and get to know my body.

I learned, among other things, what things impact my body’s functioning. I tested it out myself to see what makes a difference on my body. I now know e.g. how important sleep is to me, and what and when I eat. Knowing all the things that affect my body is my best way to get more control of my body. And more control over my body means a better life for me.

I can prepare better now if I know there is a difficult manageable situation on the way. I can also say when it’s better for me, before I’ve even tried, not to take on a hard-to-handle situation. I learn when it is better to try for myself and when it is better to ask for or accept help. We, e.g. plan escape routes for me out of difficult manageable situations so that I can have a chance to retire with dignity when my body fails me.

It’s so important for me, at this point, to be allowed to cut my own path open through the numerous obstacles that lie all over my path, so that I can learn for myself what works for me and what doesn’t. I make an effort to make the knowledge, about how and why my body works the way it works, my own, do my own tests, and make my own plans. I’m always going to have to live with my disability. It is therefore very important that I learn how to manage my disability in the best possible way so that I can do the best I can.

5.         My mother’s respect for me for allowing me to decide for myself how I want to do things even though it means that sometimes I’m going to make mistakes about not wanting to follow her advice.

Being allowed to have a say on your own life, is something that doesn’t automatically happen in the life of someone who is like me. It is accepted that I will not be able to be independent anyway and therefore it is also accepted that I have to settle according to other people’s ideas and expectations.

It’s not fair to me or other people like me. I also have dreams and plans and ideals and expectations about my future. It saddens me a lot when I talk about this. Because it’s something that’s so hard to write about, I haven’t touched it before. Now is the time for me to talk about it.

Being disabled doesn’t mean we don’t also think about our future, like other people. We also think about the future, and we have to live with what we hear and see other people say about our future. Like other people, we are also concerned about what will become of us.

My brain is not affected, I can think and understand. I know what the odds are that I can expect an independent future. This is zero. Yet, like other people, I also want to dream about my future and do everything in my power to pursue my dreams as well.

I want to be allowed to pursue my dreams.

Even though it may sound ridiculous to other people, I also have dreams and ideals and also deserve an opportunity to make it come true. It’s not right that others just give me one look and decide I can’t do something. We have to fight against our own disability and then the disabled box in which the world wants to push us. It’s a double fight.

I am very fortunate because my parents give me the opportunity to pursue my dream of going to school. Even though it’s not something other people understand, it’s my dream and my parents give me a chance to pursue it, despite others’ questions and disbelief. They help me realize my dream, they give me space to make my own decisions, they help me pursue my dreams. It makes a huge difference in my life.

Being able to make my own decisions, and allow me to say what I want, is the greatest form of honor and respect I have ever received in my life.

No one has any idea how much this means to me. My mom doesn’t speak for me anymore, she gives her voice to me so I can speak for myself. It’s the most beautiful thing anyone can do for me. It gives me the courage to stand up for others like me who are not so fortunate.