“I have no idea what I’m talking about / I am trapped in this body and can’t get out”
— Thom Yorke
An empty husk, sunk into a permanent hollow in the flannel sheet and mattress
A mattress that used to be his mother’s
Everything here used to belong to someone else,
Perhaps not the children, as when I gazed into the sky in my youth, I knew them.
But certainly the beds, tables, dressers, couches.
Even my migraine disease was bequeathed.
In my bedroom Treehouse Retreat
the fan is always whirring,
an open window lets in a little breeze,
scent of the outside world.
My stack of books, zipper case of meds, tissues and trash, lipgloss and lotion, my phone and iPad, pen and paper.
The special prayer shawl made by a lovely group of ladies at the church where my agnostic parents have provided organ and hymns for 35 years.
Beautiful notes and pictures from the girls; poems from John, taped to the walls.
Framed wedding and birth photos, the sign I took with me when Waldenbooks closed, proclaiming “I will start fresh”
My sanctuary but also my prison of pain and isolation.
Downstairs the thumping, squealing delight of my precious daughters
the clicking prance of the dog, John’s quiet laughter, “Hey, hello,” and
“Hi Ding-doggie, you wanna go out, you need to go out? Yes.”
Loud, exuberant welcome home celebrations
I cannot be part of with my current neuronal sensitivity.
J is tired, day 3 of his new job is completed, and he has much to do.
I am tired, having been alone for many hours,
dozing my pain away under a feather blanket
for the second day in a row.
Pain that right now is unusual, not too severe, but soul crushing.
It never stops. It is immune to my one choice of pill,
the tricky “triptan” Imitrex.
I will be with the girls
while J reads through
his new work policies.
I will check the homework
select the next “My Little Pony” on Netflix, fetch snacks, push pajamas, brush teeth
but not really see them, a robot going through motions.
The pain settles behind my eyes
my movements delayed
my throbbing brain still slowly trying to process why, this time, and what I should do.
I lost my headache doctor.
My neurologist will allow me only one abortive med at home which I am to take only twice per week despite my daily headaches.
I called for help last week and she wouldn’t prescribe anything else.
I have been to the ER 3 times
since Dr. T’s decision on Feb 18
and once went to a Ready Care.
Feeling desperate I tried some new supplements which might have made me worse.
Because the truth is that the transition from chronic daily migraine to twice weekly episodic could take years.
Or be not a realistic goal at all.
And without being allowed different medications, I’m going to be constantly rebounding on Imitrex
and be back, back, and back to the ER.
So yes, I think, a pain clinic next Tuesday.
If I make it that long.
Not a burden on my loved ones though, never that, except someone always has to take me to the hospital or take care of the kids
and today once again no housework was completed.
My face is flushed, my nose huge,
my eyes don’t want to open,
and with this cool blue bead wrap velcroed around my head
I look and feel ridiculous.
Pale and gaunt in a huge tee and J’s gray fleece pajama pants.
I don’t know what to do and have nowhere to turn.
And now I am lying down again,
eyes mercifully relaxed, counting my focused breaths, but distracted
by the fact that J insisted I come back up here, to rest
to let him handle it.
A burden? Yes.
Tonight J will, once again,
have to do it all.
And tomorrow my parents will
be with my 8 and 5 year old,
taking them to school, picking them up, while I curl around the pain
into the hollow of this bed-space
I’ve made my own,
in my silent, seemingly sophistic
this safe and sad prison,
my betraying body’s sanctuary.