Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), and Fibromyalgia.

A poem to ME / CFS, my longtime lover

By Zeraph Dylan Moore


It is brutal, terrifying, almost endless, I said,
but there were no words appropriate, and in the end,
I stopped trying to tell people about us.

I was becoming naked around you.
My muscles were dropping away, or rather,
it looked like dropping but it felt like tearing from the bone,
so it was in truth a strange kind of intimacy,

as if I was being prepared for an act of love
that required the most extraordinary nudity.

From the outside, no one knew what was happening.
You look so well, they’d say, you look so good.
At night your love would come and tear me open,
and in the morning I’d see the missing parts.

And people would smile at me and say, I wonder why
you cannot walk and I’d wave my stumps around and scream
that my legs were gone. It was like that, with us.

You were the worst lover.

Every morning I found it harder to get up. It was
like my childhood obsession with leprosy. Back then, I wanted to bask
in the question: what would it be like to die, while you were still alive?
“Going, so slowly, so ugly and so old,” I wrote,
thirteen and already aware of the terror of romance.

I used to have other lovers, before you.
The sky over my head as I hiked winding trails, the pleasure of cycling til my legs went numb,
swimming in the sea, the mystery of soil
& plants, working in the earth.
But you were a jealous lover.

Finally, it was just you, a romance of terror,
a romance of pain and hopelessness.
These were your special talents, for you were talented,
and even if your lovemaking involved no kisses
it was still the most intense I had ever known.


It took a long time after that to get to know you,
perhaps even to forgive you. It took longer still to learn
how to tiptoe around your traps, your pitfalls
that can expand in a moment into canyons,
spasms of emptiness, at their bottom a wine-dark
ribbon, a river as deep as the Mariana Trench.

It took a long time to learn how to love you,
to hold space for your breathless pain,
your sudden and uncontrolled descents,
your demands for silence, for darkness.

And in the sixth year of our love, I turned to you in our bed and cupped your shaking head
in my palms, brushing my thumb over your lips, your tremulous and battered-blue skin.
It is brutal, terrifying, almost endless, I said,
and I love you, and we will survive this.

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