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Tuesday, May 21, 2013

One Square Inch


I had the television on this weekend and a commercial came on showing a young, beautiful woman dancing around while she applied make-up and practiced different ways to put her hair up, making kissing sounds in the mirror, etc.  This vast darkness came over me as I thought about all I have missed out of life.  Like having one. Yes, in my twenties I had some fun and I’m grateful for that.  But I always knew my NF would get me eventually and my life would change dramatically.  So I took very few risks with career and men but not, thankfully, with friends.  Those I made and kept (well, life changes and people move on but I do have lifelong friends).

It is so easy to “go dark” when that happens.  And I’m sure it happens to a lot of able- bodied women (and men) when they see what their lives are “suppose” to look like; endless happiness and beauty to spare.  The genetic and monetary lottery.   It is beyond depressing for many reasons.  The world is running on empty but you gotta look and feel good, right?  No wonder this planet is in such bad shape.

I started thinking about what kind of shape I was in just a few years ago and it startles me so when I realize I was in pain, but driving and able to take care of myself without any help.  Yes, I was drugged and feeling crappy, but it wasn’t anywhere near as bad as it is now.  With each day, I see changes….some tiny, some big but they are there.  The tumors in my legs are getting huge and hurt like heck.  I can’t wear anything but very loose fitting sweatpants when it’s cold and loose fitting light weight slip on pants when it’s warm.  The tumors on the outside of my body are multiplying like bunnies only not as cute.  They are everywhere; on my face, my hands, my arms, legs, feet and head.  I think about other people who notice a skin lesion of some kind and get freaked out.   I don’t have one square inch of skin untouched by NF.  Not One. Square. Inch.  I’m getting headaches from the tumors in my head.  I’m not writing this to complain, but to journal my journey through this labyrinth that is NF.  Dark, scary, and no way out, only small corners of time to crawl into for respite.

But oh, how much better I have it than most; it’s difficult to hold that in one’s mind when the pain is beyond measure, but it does help put things into perspective if you can.  And the only way I know how to do that is to give thanks for everything good that comes my way.  Like food, shelter, access to medicine, friends, family and last but hardly least, Oliver.  The beast with the big mouth.  He’s started waking me up in the middle of the night by pouncing and screaming for treats.  I am nipping that by giving him less treats during the day.   That’ll show ‘em.

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