First Encounter with ME/CFS

Hesitantly, I turn the key in the lock and push the door ajar.  A waft of warm, stale air accosts me.

“Hello?”  I’d been told there might not be a response.

Something is resting against the door, so I push harder to let myself in.  The beam from the light of the open doorway is thick with dust and it takes a moment for my eyes to adjust to the darkness.  I am walking into a little foyer, with stairs ascending to the main level.  The walls on either side of the entrance are stacked high with boxes, and laundry baskets full of stuff.  There is something on the floor at my feet – a coat, or a blanket, I can’t tell – the object of resistance.  I step over it and close the door behind me.  The smell of the place hits me then, a smothering aroma of dust, and cigarettes, and cat fur.  I wonder what I have gotten myself into. th-1

“Hello?”  I call again, more desperate for a response.  Nothing.

She’ll be in the bedroom, at the end of the hallway, her mother told me.  She likely won’t awaken.

It is the middle of the day, but dark blankets cover the windows, allowing for minimal light.  I wait for my eyes to adjust before climbing the steps to the kitchen.  The rows of boxes and debris continue and flow into the kitchen, where dirty dishes and takeout containers litter the counters and floors.  Who can live like this?

I feel my way along the hall, carefully stepping through the hordes of items stashed there, until I reach the last bedroom.

Politeness makes me knock again.  Again no response.

The situation is worse than I thought, and I seriously doubt my ability to be of help.  It all started when she was seventeen, her mother told me.  She had a terrible case of the flu, followed by encephalitis, and then one thing after the other.  She rarely gets up, and has trouble putting a sentence together.  The doctors have given up on her.  She hasn’t been out of the house for ten years, and we can’t get anyone to go in.  We’d really appreciate if you’d go see her.

Two tabby cats greet me as I open the bedroom door, as does the fetid odour of a litter box.  Shooing them aside, I approach the bed.  Rumpled bedding is tangled up in the middle of full size bed, but no sign of any thirty-three year-old woman.  Now what? th-7

I decide she has to be somewhere within the mess of sheets and bedding, so centering myself, I begin, running my hands just above the bed, hoping for some sense of heat, or thickness, that might indicate a body inside.  Instead, I just feel foolish.  So, I stand at the foot of the bed and take some deep breaths, re-centering in hopes of some divine inspiration.

“Well?”  A faint, creaky voice emerges from under the covers.

“Hello,”  I say again, beginning to feel like a parrot.

A thin, waif-like hand appears, followed by a matted head of hair.  She is tiny.

“Any hope?”  her voice sounds as if it is coming from under water, slurred and garbled.

I am at a loss for words.  Here is this wisp of a woman, holed up this house with no daylight, and no fresh air, locked away from humanity, and all I can think of is how can she possibly survive.  I would have committed suicide long ago if it had been me.  What can I tell her about hope?

Then I remember something both Joan Borysenko and Bernie Siegel  said during workshops I had attended:  There is something to love about everyone.  Find it and you can help them. 

“Yes,”  I say.  “I believe there is.” th-6

“Really?”   The word comes out stretched and squeaky.

She has survived this long.  She has beaten odds, and continues to live.  It isn’t much of an existence, but something keeps her going.

“You have an incredible will.  Now, you just have to learn to channel that will to get better.”

* * * * *

This was my first encounter with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome.  At the time (early ’90s) I was unfamiliar with the disease, but had agreed to visit the patient as a practitioner of Therapeutic Touch.

I think of this woman often, especially now that I, too, have ME/CFS.  She did eventually get better, a journey which was long and arduous – 17 years in all.  From this early encounter, I watched as she began to emerge from her cocoon, slowly unraveling her way back to life.  Her courage and unwillingness to give up gives me strength each day.

This is reposted (and edited) from One Woman’s Quest. 

 

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Permission to write, paint, and imagine are the gifts I gave myself when chronic illness hit - a fair exchange: being for doing. Relevance is an attitude. Humour essential.

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