I was
talking to my manager about my family, specifically why we have all these
doctor visits that include MRI's, blood draws, vision checks....
I wasn't
asking for time off for these appointments... but he was curious, because I
talk a lot about being at the doctors with my kids..."Are they sick?"
he asked me.
Well.
Technically NO. They aren't "sick".
He is
the same manager who found my keynote speech in the office, read it and spend
some time googling me and Neurofibromatosis...So he was completely receptive.
But as I
explained NF in more detail, he just looked more confused.
He said
to me...."I didn't know there was anything wrong with you...."
This
rubbed me the wrong way. It didn't make me ANGRY, but it ANNOYED me enough that
I took a few moments to responded to him...."Having NF doesn't mean there
is anything WRONG with me. It just makes me different. I deal with
things that you don't have to.....But at the same time...YOU deal with things
that I don't have to deal with."
The old
saying is 'we all have our crosses to bear'. For some people, the worst thing
they deal with from day to day is getting cut off in traffic, or spilling
coffee on their blouse. For others, it's a fender bender, or not enough money
at the end of the month. For those with NF, our perspective tends to be
broadened to include what the world might consider 'tornado-level' results -
tumors, chemo, deformations, and more.
But
people who don't have NF have their own stuff, and to them it can be just as
bad. In some cases, it IS just as bad. In some cases, it's WORSE. Disease and
Death touch us all.
It
doesn't mean anything is 'wrong' with us. It just means that this is our life.
Saying something is 'wrong' with us is the world's way to label us, to label
anyone too different, really. To compartmentalize us, so they don't have to
think about it - they can dismiss us by just saying something is 'wrong' with
us.
But they
can only succeed in doing that if we allow it - if we shrink into those
compartments, instead of living the lives we deserve, and being the people we
want to be.
NF is
just PART of my life. Yes, it intertwines with everything I do, and
everything I am...Yet it isn't the thing that defines me.
Don't
let it define YOU.
Thrive
on.
