60 Years Ago Today

60 years ago today I was born.  Five years later, a doctor noticed the cafe au lait spots on me and warned my mother of a potential health problem that could be serious.  It was called Von Recklinghausen disorder at the time, named for the person who discovered it.  Later it was changed to Neurofibromatosis.  At age 11, the diagnosis was made.   And it’s been endless doctors, pills, MRI’s (before that other X-rays) and who knows what else.  At the time, learning disabilities weren’t a consideration for anyone, including me.  It was regular classes or the “dumb classes” in some cases.  Mostly I was with everyone else. 

But I did poorly and suffered mightily, struggling to keep up with my peers, most of whom seemed to manage just fine.  The exception was writing.  And reading.  I read all the time.  And if a teacher gave us a writing assignment with a minimum number of words, everyone would groan except me.  I always went over.

When I had my first surgery they warned me I may come out paralyzed from the neck down, depending on how the tumor on C-4 was seated.  It was, thankfully, something the surgeon was able to take out without paralyzing me, although it grew back and had to be removed again.  The tingling and numbness are back in my arms and hands though not as bad as it was then.  But legs and feet?  Horrible.  The pain?, well, you know.  Atrocious most of the time.  And the news of the world makes it worse, so I must stay away from it.  I am terrified for our planet and everything on it, including people though not me.

All that aside, I am grateful I have been able to experience the following:

The sunshine, blue skies and warm air to sunbathe in, hitch-hiking around the country when I was 22, camping under starry skies, watching an eclipse of the moon (and a “supermoon” is going to be visible tonight if the clouds stay away), all the love affairs I’ve had, short though they were, too many jobs to count but had fun in many of them, dear and true friends, family that accepts me for who and what I am, milk chocolate when I was a kid, dark chocolate now, the “est” training and what it taught me, though we laugh at it now at the time everything was fresh and new and “mind blowing”, the chance to experience at least some of the sixties, though I was pretty young and many more things that would take pages and pages to fill.  But most of all, I am thankful for this:  My pain.

I know that sounds weird, but the pain has taught me more about life than any of the “pleasurable” things I listed.  It’s taught me patience, understanding, acceptance and has helped me to guide others though this maze/abyss.  I have learned much from other people as well.  It has taught me not to judge so much. And not to worry if I think someone is judging me.  I mean, if someone says something to or about you that you feel is unkind, the only time it matters is if what they said was true.  And sometimes, not always, if it hurts that much, there is a grain of truth in what they said, you just haven’t uncovered it in yourself yet.  If there is no truth it what they said, smile to yourself and let it go.  I’m working on that one. 

Make no mistake, I still want to be done.  Clearly, it isn’t my call, at least not yet.  I haven’t been able to unravel the mystery of why I think it would be wrong.  If my body is but a vessel, and that vessel is feeling agony, why not get rid of the vessel?  Sigh.  It’s not so much a religious reason (for not doing it).  It’s a spiritual one.  Feeling like it would be somehow cheating.  Cheating my soul from learning something to its completion.  Why do I think things like that?  When the pain is unbearable, I feel like a fool for thinking that way.  When the pain is tolerable, I kind of get it.  

My body continues to change, like everyone else.  And yet, not like everyone else.  In the end, I guess, it's all the same