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

Can you see me

By Wendy Matthews

Do you see me lying here?
I’m real. I feel.
See the picture on the wall
That’s me, how I used to be.

Mute inside this immobile form is me.
Compressed, raw, real, feeling, thinking.
Still me.

I don’t want to be a burden,
so I don’t say too much.
But there are days I would cry, if I could.
But I can’t breathe if I cry.

Hearing every sound.
Clocks ticking, doors banging, people talking, laughing.
It steals my energy. Hurts physically, emotionally.
But you can’t see.

The door keeps banging. The clock keeps ticking. Lights too bright, odors too strong.

If I’m not the perfect patient will you still care for me?
Another week gone. Another month. Another year.
But I’m still here.

There’s a gulf growing. We live in different worlds you say.
Yes we do but I want to connect with what used to be our world.
But you don’t have time.

I keep still, trying to be no burden.
Inside the anxious thoughts come, hit a high.
I wait quietly for them to go.
I walk them out through the door of my mind.

I imagine the sun still shining above the clouds, the flowers, the scent of rain, the feel of water, a hug.
It’s so long since I’ve had a hug.

In slow motion I drink, eat, weight shift to prevent bed sores.

I hear you escaping to the beach, planning time away, another holiday.
You’re trying but feel so helpless.
Rejected by the illness, you want to run away.

Let’s run away together.
I’ll imagine the sun above the clouds.
You’ll feel the water when you swim.
Joy! Still there.

Can you stay if I’m the perfect patient?
If I’m not a burden?
I’m trying.

Inside this quiet form is me.
Bag of bones that I am.
Unwashed, unkempt.

But I dance in my mind to songs I remember,
I write stories, plan for a future.
I wonder how I can help my kids.
I still care.

Listening, always listening.
The sound of footsteps.
The kitchen sounds.

I used to have a home
now I have a room.
I used to have flowers
now I have weeds.

But there’s a beauty in weeds.
I see them dancing through the crack in my curtains.
Graceful grasses seeding, birds balancing on the stalks.
Subtle colour changes.

Can you see me, can you hear my heart?
I’m alive.
I’m the me you see in the picture on the wall.

Sit awhile, don’t run away, please stay.

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

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