Throughout my whole life people have told me about myself. They say things like, “You’re so strong.” “You’re so brave.” “You’ve got an amazing attitude.” And they often want to know, “How do you do it?”
“Do what?” I want to ask. “What do you mean, I’m strong and brave? So – I generally have a good attitude. Isn’t that a good way to go through life? Much better than sulking around every day, don’t you think? And what have I got to sulk about anyway? My life is pretty good, I think.”
These people – these observers of my life (or what they perceive my life to be) – they just don’t get it. They think it must be so hard to be me. Poor, little, disabled me with the leg braces, walking stick and all the other challenges I “must” endure because of the “unfortunate” situation I was born into.
But yet, they see me working. They see me married. They see me with my happy, healthy daughter. Wow! Look! The girl’s done okay for herself despite her “problems”. She’s so strong and brave. Amazing!
Okay, then. Whatever. Yes, I admit my life is good. My life is full. I’m generally a happy person and I’m doing okay. But, to me, my state of happiness or success or life fullness has absolutely no relationship to my physical challenges. That is, I am not happy in spite of my disability.
I did not get to this point in my life because I felt the need to “prove” that I could lead a normal life just like anyone else. In fact, I can’t think of one instance where I decided to make a stand against my disability in order to do something or get somewhere, including having a child.
Yes, of course I thought about what a pregnancy and childrearing would mean to me as a woman with spina bifida. And my husband and I did think long and hard about the prospect of starting a family and all that would entail for us and our specific situation. We did as much research on the subject as possible and made the smartest decisions we could based on our findings and my doctors’ guidance.
But I never once felt like I couldn’t have a child because I’m disabled. It never entered my mind.
Likewise, in raising Ella – I have simply always done what feels natural to me. Just like everything else I do in life – I just do it. Sure, I may have to make adjustments. Or, after trying something, I may find that I can’t do one thing or another (at least on my own). But I never give up. I never say can’t. Nor do I ever blame my physical challenges for any so-called “failures” I run into. I just live life the best I know how. That’s all I can do.
You see, it’s like this. I’m not disabled as a result of something that was taken away from me. Like, one day I could walk and run just fine and the next day – boom! – I couldn’t. I am the way I’ve always been. I’ve got nothing to mourn – any experiences I wish I could have again “like normal” because, to me, I am normal. I’m as normal as I’ve ever been. And, therefore, the way I go about living my life – it’s just normal. It just is. No biggie.
So – yes. To others I suppose I may appear to be an amazing spirit who bravely solders on despite my hard-knocks life. What a gal!
But when I look at myself in the mirror, I just see me staring back. Short, shy, kind of cute and increasingly impatient Amy. I get things “wrong” everyday. I’m way too insecure. I’m a scaredy cat over silly things.
I don’t have very many close friends. I can’t cook and I’m a lousy housekeeper.
What is amazing about my life, though? My family. My husband and my daughter. My life is amazing – yes. But it’s the wonderful people I’m surrounded by that make it so. Not me. I’m just Amy.
Email Amy at firstname.lastname@example.org