last night her sleep was measured on steel,
****** down without a drop wasted.

we were spoons ‘til her limbs stilled -
tears spilled, found their way to my pillow.

I don’t know why I cry - if tears did help
she’d feel better by now.

We talk in spoons. It’s an alchemy of sorts, though we don’t seek gold or eternal youth. A whole world of research says this curse is real. Yet Medicine has Science bound and starved. We resort to picking the threads of work that we find, weave from it our spells and our hope. Pin to it her everyday dreams. And though they are flimsy her dreams are beautiful simplicity: A five minute walk, or fifteen sat on the beach. A trip out, but maybe stay in the car. Ten minutes looking at clothes online, or coming downstairs if the windows are shut and we close the blinds. It is all connected, strung together like beads. If she showers today, she can’t go for a walk ‘til next week. She stretches too far then I worry she’ll ping, and I don’t know if I could string her together again. For now some dreams are too heavy. She’s removed them, hidden them like treasure. She brings them out when she can. Handles them, turns them to see if they shine in the gloom. These dreams are more prone to fracture, to shatter at a set time.

don't look at me like that
as I rise on shaking legs
and begin to push my chair up a steep hill.

I am far too tired to put my body through the hell
that self-propulsion would inflict upon me here,
and far too tired to tell you anything more than to
b a c k   o f f
as you raise a judgemental eyebrow,
or make a pointed remark to your friend
about how lazy the youth these days are.

if I could summon the energy, I would say
'forgive me; every cell in my body is giving up on me
and it is almost more than I can bear to be awake right now.'

if I could summon the energy, I might even give
a brief overview of chronic illness, before realizing
that I owe the details of my medical history to nobody.

if I could summon the energy,
I wouldn't be in this ****** chair in the first place
ducking your glares and stares and *******.

so don't you dare look at me like that,
or I'll run my wheels over your foot.

No matter how much you sleep
sleep finds a way to creep
into your weary bones
and broken dragging mind

It always clings tight to you
fogging up your view
like sea mist over your eyes
it covers everything in sight

Rolling waves of exhaustion
sleeping now would be noxious
because the sea that is sleep
is only there to drown you