(A bit of a rant)

Could you use a disability ambassador?
I’m not meaning to bitch, 
but it is really important that I show up for this gig.
My girls are meeting in Chicago and driving out. 
Psychologically there is a thing
about showing up
In Real Life.
in physical presence 
the same way I show up
on the page,
behind my words,
on a chat screen.
and I have been having a reckoning.

How do I actually do that?
when I have a disabling disease?
In most normal situations I’m fine.
to make a thousand calculations of familiar places.
but this isn’t a normal situation.
I would put my body on the line.
it is that important.
if you have read about the woods,
you would understand.
the trip is unadvisable for someone like me.
it is unreasonable.
2 days.
hot sun.
why would I do this to myself?

Probably you know very little about MS.
it is a progressive neurological disease with no cure.
it attacks the cns, the brain, the spinal cord.
I am doing well, but there is a slow worsening.
2 miles, 1 mile, 0.5 mile
walking gets harder for me.
fatigue sets in.
my gait falls apart.
some nerves fire to slowly
and don’t coordinate motion right.
heat generally makes things short circuit faster.
I have to pee a lot.
sometimes I feel vaguely dizzy.
it isn’t generally painful but sometimes there are muscle spasms or headaches.

look, I’m not trying to be a pain in the ass.
just trying to prevent catastrophe.
I don’t want a rescue
I just need information
solid info about the venue, the setup,
what is encouraged and what might create problems.
I need to figure out logistics
need to know what to bring
right now all I got is legalize and vague handwringing.
it says you are a problem we can’t solve.

the thing is
the disabled community are some of the most resourceful people around.
we don’t need you to fix our problems.
but tangible information is helpful.
that is if you even want us there, to be included at all.

and, hon, I really want to be there.
want to be in that number.