A couple of weeks ago, I joined the #SpoonieSpeak chat and the theme was inspired by a my blogger friend Sarah’s post about misconceptions about people with disabilities. The chat and group of people who tend to join in every week have become a part of me and even though my problems are more physical, these people understand almost everything about what I have to deal with on a daily basis. There’s pain, both emotionally and physically that comes with living with any disability and they are very supportive and there for you when you need someone.
The last question that was asked was “when you are able to, how does taking care of your appearance mean to you?” I was very honest with my answer, I mentioned that I’m not able to dress myself, wash my own hair, and do my makeup. As much as I enjoy getting my hair washed and dressing up in casual wear, I look forward to going out and being able to do my OOTD posts, that part makes me feel good, but there’s still a part of me that wishes I wasn’t so depended on somebody else to help me get dresses, wash myself, etc I mean these are things that everybody can do, but I can’t. One tweeter commented that I should focus on being pampered, but again very honest reply, I’ve always hated being pampered, spoiled whatever. I want somebody’s time but I don’t need to be showered with attention. We don’t need to give my ego that much power!
People just assume I do it all with my toes, but in reality I can’t. There are STILL a lot that I cannot do on my own and I absolutely hate it! However, there are a couple of things that I have learned to let go, like the getting up my bed/couch on my own, that will be something I’ll just never be able to do again. In a strange way though, this whole thing is like if one door closes, another one opens. I don’t have the strength in my body to push myself up off the floor but I can teach myself to do other things like when my mom goes to transfer me from the couch to my push wheelchair, I can stand on my tippy toes and not only hold myself up against but also pull myself into her so we can successfully go from one place to the other. I think that by itself is pretty cool!
I’m always asking myself what else is there for me to do?
I feel as though I’m learning to do new things as little kids learning how to adjust not being able to use their hands or use a wheelchair for the first time. I don’t want to do things just to do them. The things I’ve been learning to do lately are things that I’ve been curious about in the last few years, like when I’m older and have a family of my own or living at an assistant living place, can I use a vacuum? Can I open my own boxes, cans, jars? Can I put my own trash bag on the can? These things have been carefully planned out in my head and I can say I’ve tried my feet out on almost every single one and I’m still learning. That’s all I can do is learn. The decorating my birthday cake with my aunt was another wonder in the back of my head, I’ve been wanting to cook and bake for almost two years now. I wanted to make/decorate a cake because if I have a partner and/or have kids I don’t want to go out and buy an already made cake, I want to do it myself and that’s why I want to continue to learn to do more in that area.
I want to do a lot of things in my life, nobody is going to tell me what I can and cannot do. If you do say “she can’t do that” just as a warning, I’ll only take that as a challenge! The point of this post is that I don’t want to learn things to get praise or admirers. I’m adapting to my surrounding that’s what I’ve had to do my whole life.