Betsy Unger, who has severe ME, shared a photo and accompanying poem with the group. The photo is titled The Ocean Floor. Betsy wrote that the photo “illustrates the experience of temporary paralysis in Very Severe ME. Caged in pain and sunk beneath the weight of the entire sea above unable to even cry out. There but not there, waiting to rise again to the top, afraid this will be the time I won’t.” 

Betsy takes her photos unplanned in the dark, with eyes closed on an iPad. It is not composed, but she believes it captures an experience of Severe ME of which is rarely spoken.

The poem Betsy wrote to accompany this is here:

Poem: Underway
This is no bed, it’s a boat–
a great grey ocean liner
with a bellow in its throat.
No tossing and turning, she just plows straight ahead,
splitting the platinum night sea,
her windows a twinkle with swirling lights
of pleasure, ease and greed
No thought of fate
or storms
or ice
or disease.

This is no bed, it’s a boat–
a kayak entirely self-propelled.
It can roll and keep on going;
it can’t be taken down.
With it I explore my memory dreams
of the kettle ponds at twilight.

My paddle cuts the purple liquid mirror,
two of everything.
I poke at the lily pads
with their long stems
reaching deep into the shimmering silt
anchored in all that waits.
I will not pull on those stems;
I am not ready to know what’s ahead.

This is no bed, it’s a boat–
a dented aluminum dinghy,
dragged to the lip of the bay.
I am too small for it’s wooden oars and
they slip again and again from their oarlocks.
But my father is waiting for me.
He wears his red and blue-striped seventies shirt and
stands in his Day Sailer with its moldy
life jackets, salty ropes and splintering cabin
big enough just for me.
The light and the water dance furiously.
There is nothing ahead but journey.
We raise the sapphire spinnaker.
It clangs and flaps, teases and floats
then suddenly snaps, fills and flies.

This is no bed, it’s a boat–
no sickness, no pain,
no end, no doubt,
just pure, blue grace.