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Sunday, August 7, 2011

Parking Spaces and Other Disasters


Years ago, I had a friend (now deceased) who had MS and was in a wheelchair. In spite of this, she got her degree, taught school, changed her own tires and generally amazed me. Once, we pulled into a restaurant next to someone who took the last disabled spot. In a sports car no less, got out laughing (not at us) with his friend and walked without a problem, inside. I was angry beyond words, and wanted to say something to him. She said forget it, it’s not worth it. And she meant it. She just didn’t care. When I got out of the car, I noticed that the spot he was in was just next to the disabled spot we were in, but was not a disabled spot after all. I felt like an idiot. She laughed.


I share this because I have a disabled plaque now due to being unsteady on my feet.  I should really be using the walker that sits in the corner of my room with clothes draped over it. But I’m needlessly too proud. I tell myself it’s too much work getting it in and out of my trunk. I seldom go anywhere anyway except the grocery store, and their shopping carts are fine. But every once in a while, I get “the look” from people who think they know me and because I look “fine” I must be taking advantage of those who REALLY need that placard. What I’d like to say to them is this:


First and foremost, I have a genetic disorder called neurofibromatosis (NF). It’s a complicated, many layered disorder that wreaks havoc on the host body, in this case, me. I have inoperable spinal tumors that leaves me in pain that you personally would not be able to withstand for five seconds, but I’ve grown accustomed to it.  And my other health problems, some related to NF, some not, are too many to list.


 These are the things I sometimes want to say. But I say none of these things. There are times I want to teach “them” a lesson by spewing out all the above. (It's funny because when someone realizes they made a mistake they say "Sorry I didn't know" which is of course, the point)  But it isn’t worth getting worked up about them. Because I don’t know them….just like they don’t know me. I have no idea what they are up against either. I just need to remind myself of that, when I find myself boiling over from looks which I have interpreted as personal. But it can’t be personal if they don’t know me. And that is what my friend Staci knew all those years ago.


G-d, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference. And all that!






Friday, August 5, 2011

The Choice





Often when dealing with my health problems with neurofibromatosis, I see myself sitting on the small ledge tucked away on the side of a mountain. Beneath me is the endless abyss of darkness and fear so deep it takes my breath away. There is only a small branch to hang onto, and there are days I am clutching that branch with all my life. But the flip side of that is this: I sit very still and look all around me. I see the most amazing vistas you can imagine; mountain views, sparkling ocean off in the distance, rain squalls on one side, a rainbow on the other, eagles and other birds flying above, squawking and diving....at night the stars are endless and I am never too hot or too cold. I can almost hear Louis Armstrong or Willie Nelson singing "What a Wonderful World"

 So that's the choice. And I make it every minute of every day. Sometimes I'm so close to the abyss it terrifies me, but when I think of my family and friends, I'm on the other side. And that's what we ALL have to do, every single day, often many times during the day. Whatever your vision of the choice is, that's what we have to do in one way or another.

 The abyss is a very seductive, cunning lover. But it isn't the inner partner in life that is good for us. The true inner partner is quieter....it needs to be courted consciously. It speaks softly and it waits patiently
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