On Being Told To Live Independently

“You should learn to live independently. There’s a cerebral palsy patient that renovated her house and lives alone”

“You should learn how to cook. At least fry some eggs. If your parents are not around, at least you will not be hungry”

Words could hurt

Yes, hearing that affects my mind. I started to think, “Am I troubling people? Do I look like I have to be spoon-fed on everything?"

I was reminded that spinal muscular atrophy (SMA) is with me every day. But here's the thing about SMA you need to know.

As much as I wanted to live independently, let’s just accept the fact that I cannot. Have you seen anyone with SMA living alone without any help from anyone? As far as I know, even someone with a less impactful type of SMA will need help from others in certain situations. They will need assistance to lift their wheelchair, in the bathroom, and so on. If there is, I would love to know that person personally.

I cannot be completely independent

I was asked to learn to be independent. Live alone in a house. How I wish that could happen but sometimes, I think, we need to accept the reality.

I am trying my best to do everything on my own but at some point, I will need help from others.

Accepting my disability

Since childhood, one thing that my parents taught me was to be proud of who I am and never be ashamed of being disabled. Growing up with my late sister, Aqilah who also had SMA, was not easy, but we never questioned or asked why we cannot do this and that.

Our parents always asked us to focus on our ability rather than our disability. Of course, there are things we cannot do, but why should it stop us from doing other things? For instance, back then we could eat and chew normally. We didn't need to depend on feeding tubes or peg tubes. We were still able to use our hands to write and hold a pencil and pen. Simple things we should be grateful for.

See me, not my disability

Also, having that perception in my mind helped me a lot in building confidence, especially during school days. Our parents taught us to stay humble and never be shy to ask for help. Yes, in school we were lucky, we were surrounded by kind-hearted people who would always offer help.

Until now I have focused on doing things that I can do and I will continue with that belief. Even though there are some changes and problems to deal with while growing up with SMA, I would not let SMA take away my spirit.

I know what I'm able to do

For those offering me advice: For the time being, can we just take a chill pill and be grateful for what I can do now? I appreciate the kindness in making me live independently but there’s a limit to everything.

Just a little reminder, remember everyone is entitled to their own opinion but that does not mean you have to listen to them or let it affect you.

In my case, I understand and know my body better than anyone else. After all, I think you, do you?

I guess until one knows what it is like, no one can understand what it is
Ainaa