First Glimpse Of ME/CFS

Hesitantly, I turned the key in the lock and pushed the door ajar.  A waft of warm, stale air accosted me.

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

Something was resting against the door, so I pushed harder to let myself in.  The beam from the light of the open doorway was thick with dust and it took a moment for my eyes to adjust to the darkness.  I was walking into a little foyer, with stairs ascending to the main level.  The walls on either side of the entrance were stacked high with boxes, and laundry baskets full of stuff.  Something lay on the floor at my feet – a coat, or a blanket, I couldn’t tell – the object of resistance.  I stepped over it and closed the door behind me.  The smell of the place accosted me then, a smothering aroma of dust, and cigarettes, and cat fur.  I wondered what I had gotten myself into.

“Hello?”  I called again, more desperate for a response.  None came.

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

It was the middle of the day, but dark blankets covered the windows, allowing for minimal light.  I waited for my eyes to adjust before climbing the steps to the kitchen.  The rows of boxes and debris continued and flowed into the kitchen, where dirty dishes and takeout containers littered the counters and floors.  Who could live like this?

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

Politeness made me knock again.  Again no response.

The situation was worse than I thought, and I seriously doubted 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 doctor’s 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 greeted me as I opened the bedroom door, as did the fetid odour of a litter box.  Shooing them aside, I approached the bed.  Rumpled bedding was tangled up in the middle of full size bed, but no sign of any thirty-three year-old woman.  Now what?

I decided she had to be somewhere within the mess of sheets and bedding, so centering myself, I began.  I ran my hands just above the bed, hoping for some sense of heat, or thickness, that might indicate there was a body inside.  Instead, I just felt foolish.  So, I stood at the foot of the bed and took some deep breaths, re-centering in hopes of some divine inspiration.

“Well?”  A thin, croaky voice emerged from under the covers.

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

A thin, waif-like hand appeared, followed by a matted head of hair.  She was tiny.  “Any hope?”  her voice sounded as if it was coming from under water: slurred and thick.

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

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

“Yes,”  I said.  “I believe there is.”

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

She had survived this long.  She had beaten odds, and continued to live.  It wasn’t much of an existence, but something kept her going.

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

* * * * *

Patty’s story is for another day.  Meeting her taught me the importance of an idea that works.  There is something to love about everyone.  I use it everyday in my teaching practice.

(Image: www.experiencewellness.co.uk)

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