I'd been on a plateau so long
I could convince myself that this
was as bad as it was going to be
And I could handle this.

Then the rest of my life collapsed
for a while and when I came out of it
the disease had taken another course.

Hello again. Who are you now?
You've given up
the sudden short sharp pains.
You've given up
the sudden thrusts that made me think
my heart had gone off!

You've even given up for a while I'm sure
the unbearable itch
that stained my sheet with the blood
of sharp nails in skin that only hid
the depth of itch that no amount of oil
could masquerade as something
that lay only on the surface.

Yet that was gone. But now
the burning came by day
the weariness that didn't wait 'til
three or four or five but
came at ten. Or eleven.

The fingers...not the fingers,
don't let it be the fingers..
the typos so frequent now
the hint of numbness
the teasing pin pricks
and sudden stabs
reminding you that it's alive
and it will get worse.
It's getting stronger.
What have I been feeding it?

So much for plateaus.

The author's note to her fellow CMTers: I wrote this poem and couldn't share it with anybody, I didn't want to hurt people close to me because I guess it would upset them, but you are brothers and sisters in this thing and who else would know what I mean?

Editor's note to non-CMTers: People with CMT often find that the progression of their disease goes on in steps: It stays on a certain plateau for a while, and you learn how to live with your restrictions and to arrange your life accordingly somehow.
But suddenly another step happens, and you find yourself on a new plateau with new impairments you have to accept, and new losses you have to compensate, and new pain you have to endure, and you have to reorganize your life again ... and again ... and again ...