I remember Ginger making the comment, "If she is in so much pain, how can she be laughing?"
I didn't understand what she meant by that. Am I supposed to walk around looking like I'm in pain all the time? If I only laugh when I am not in pain, I am afraid I will never laugh again! Laughing and smiling make things bearable, but they don't take away from the fact that it hurts. It sucks!
In the book, Always Looking Up, he talks about the image of people with disabilities. He is specifically talking about people with physical disabilities, but I believe it is the same for those of us with other disabilities. He asked the question, "Why is this segment of the populations responsible not only for how they feel, but how YOU feel about how they feel?"
And there it is. The reason I have felt I was selfish all my life. I am responsible for my feelings, and for the way others feel about my feelings.
He then goes on to quote an article from Times, an amputee was approached by a mother at a neighborhood pool who told the woman to put her prosthetic leg back on because it was "upsetting my child."
"The only explanation, if not excuse, for the thoughtlessness of this mother is fear. Unwilling or unable to explain disabilities to her daughter, she reacts to Ms. Haddad as though she were the transgressor. Yet it seems ridiculousI have encountered that fear a few times in my life. I will encounter it a lot more, because I won't be silent like I have been. I won't hide the things I have been through, or the way it effects my life. There will be many people who are afraid, and I hope that I will be compassionate enough to help them understand... rather than telling them my latest favorite line,
to imagine a mother approaching an able-bodied woman at a pool and asked her to drape a towel over one of her legs because it's upsetting her amputee daughter."
"If you are going to heaven, I'd rather go to hell..."In the book, he used Rush Limbaugh's insensitive remarks as a push.
"Let's face it, the whole episode, unpleasant though it may have been, was a gift in the same way that I have described Parkinson's as a gift. You suffer the blow, but you capitalize on the opportunity left in its wake.Why should I hide what I have been through? What I am going through? Why should I pretend that everything is okay, when it is most certainly NOT? Why should I protect people who have been protected for 47 years? Or 34 years? Or 99 years?
The notion of hiding--this is what struck a nerve. Feeling the need to hide symptoms is so key to what patients of all kinds of conditions have to face. We have to hide--don't let anybody else see, don't let them think you're drunk, don't let them think you're incapable, don't let them think you're unstable, your unsteady, you're flawed, you're devalued. Mask it. Hide it. Cover it up..."
I would rather live in a world where we are real... about the good and the bad and everything in between. I would rather live in a world where it is okay to hurt and it is okay to feel joy, and its even okay to feel both at the same time. I can't hide anymore... and I still feel like I should apologize for that.
I want to be free to be me... that means laughing when I want to. That means crying when I need to. That means asking for help, or doing it on my own, following others, or finding my own way.