It Starts Here (Part One)

I have been struggling with what to write on my blog.  I don’t want it to be remorse, but I do want to tell the truth.  So I seem to vacillate between light stories and my deepest, darkest fears.  I’ve decided (for now) to just start my story from the beginning and go from there….hopefully, someone somewhere will get something out of it….and if I falter or write something unrelated, you will know about it!

When I was five (1958), my pediatrician noticed all the café’ au lait spots on my small, thin body and told my mother I might have a rare genetic disorder called Von Recklinghausen disease.  Named after the person who discovered what we now call Neurofibromatosis or NF.   My mother put it aside somewhere in her brain, and when the tumors started appearing, the doctors thought it was cancer.   I had two removed; one from my chest area, and one from my neck.  They came out and announced “We ruled out leukemia”  My mother didn’t even know it was ruled in.  I think she was in denial.

This was in 1964, and diagnosing NF wasn’t common, but I got lucky.  They started sending me to neurologists to keep an eye on it, but they had no idea about the non verbal learning disorders that accompany this disorder.  Not a disease, as earlier thought, a disorder that has to do with the genes.  Genes 17 and 22 to be exact, but again, I’m skipping ahead.  I’ll try and stop, but you know me (well, you don’t but you know what I mean).  There I go again!

So school was a nightmare.  I wanted to drop out so bad I could taste it.  Luckily for me, my parents pushed me.  One of the greatest gifts (perhaps THE greatest gift)  came from my father; the gift of reading.  He could be a terror around my poor grades because he just thought I was being lazy.  I do not blame him for anything.  That was the way it was back then….no one knew about learning disabilities (read my post “The Scapegoat”) and how they effect studying.   The only option for people like me was the “dumb classes” which I attended with the exception of one or two classes I actually excelled in….English and writing.  I had a writing teacher who told me I wrote like Dylan Thomas!  What a compliment that was!  I LOVED reading, and read Hesse, Thomas and many others who I can’t think of at the moment.  I still read a book or two a week.

But science and math?  Forgetabodit!  My dad would grill me on the multiplication tables endlessly to no avail.  I just couldn’t do it.  I’m better now and can do some things in my head quite easily, but back then I wanted to kill myself.  I actually have no memory of that, but recently, my dad told me mom (who has passed) worried about that all the time.  It is hard not to be depressed when everyone around you (your own age) seems to be breezing through school, dating, having fun….I did none of those things.  I had a few friends, some I am still in touch with after 40 years, but other then that, I just wanted to be done with it (school).

It’s funny, because I don’t remember being in pain back then.  I remember a lot of other things, but not physical pain.  Yet people from my past tell me I complained about it.  I remember the tumors being more tender during my cycle (which I wrote about already) but certainly not the kind of pain I’m in now.  I do, however, remember that is as clear to me as the day it happened.  I remember the day I confessed to a teacher that I would never marry, never have children.  I was 15 at the time, and the teacher (a religious study teacher) laughed and said I would change my mind.  I looked at him in the eye and said “This isn’t about making a decision…I just KNOW like I know the sky is blue”

So maybe it was a self fulfilling prophesy, or maybe I did know.  I think it’s the latter.  Because with all the negative, scary things about this disorder, the one gift I got out of the deal was the gift of sight.  I’ve written things about it on this blog.  It’s real, sometimes it’s frightening, but I do see it as a gift.

And as crazy as it sounds, with all my physical challenges, I see my NF as a gift too.  I told a friend of mine I wouldn’t trade it for anything and she told me she didn’t believe me.  But it’s true.  Of course I would rather not be in pain, you’d have to be nuts to want that…but here’s the thing.  It’s mine.  Mine to do whatever I want with, learn if I’m open to learning, and be a better person if I’m willing to do that.

Having it too easy is a curse because you don’t grow.  So be grateful.  I’ll end this particular installment now!

My actual high school....seemed bigger back then