Day 261 Birth

It’s been almost a year since I received the diagnosis of ME/CFS; two years since the visits to the emergency room escalated and I knew something was very wrong; four years since I suspected my system wasn’t working right.  Step by step along the way I have died in little pieces:  watching my dreams (some shared, some personal) slip away.

While waiting for the results of Thor’s biopsy we made out a bucket list:  places we wanted to travel, activities to pursue, risks to take – all requiring energy – all beyond my capabilities right now.

I am told that people recover from this disease – thirty percent completely – and others learn to adapt to the eventual return of some functioning – and so I keep hoping.

I am not one to believe that life is a haphazard set of events and then we die.  I believe that there is purpose and opportunity around every corner and that the trials we are given are invitations to delve deeper into the mysteries of the universe and the wonders within.

With this mindset, I await the first dawning of new light:  the birth of something new.

Every day I am letting go and surrendering -accepting – this process with an open heart and mind, anxious for the labour pains to begin.

Life remains pregnant with possibilities.

Pleas(e)

If you see me,
rapt up in battle,
wrestling a would-be assassin,
my life precariously hanging in limbo,
no professionals in sight,
please don’t walk away.

I am alone and tiring,
and my assailant is intense –
forcefully focused on bringing me down,
and I am fighting with a strength
I didn’t know I possessed,
and cannot depend on.

Am I shadow boxing?
Fighting a foe no other than myself?
Is this an act of futility
and I a fool for trying?
Should I lie down and play dead
and take my chances?

My spirit says “No!”
I’m not ready to die!
So I fight, and I fight
straining to restrain
my grip tightening
I dare not let go.

And I would not mind if you’d step in
and give me a hand
and take up the struggle with me
offering enough support
that I might call for help
now, when it’s really needed.

‘Cause, strong as I seem
my control is clumsy at best,
and it is only by some strange miracle
that I am winning at all.
So please, before I am lost,
If you see me, struggling with life,
don’t walk away.

Day 260 “The Laughing Buddha”

At seventeen, my mother married an airman, hopped on the back of his motorcycle and travelled across Canada to northern B.C. to begin a new life. When they returned, after the war, it was to a tiny rural home with no running water or electricity, where she gave birth to twins. Two more babies would follow, as would the realization that her husband was a womanizer and sadist, taunting her with his conquests and beating her when she complained. When he finally left her, destitute with four children, she met and married my father, who brought with him a whole new series of challenges, and they had two more children together.

Illness followed her throughout her life, as lung failure in childhood, a broken back when we babies where young, and three rounds of cancer. Now in her late eighties, she lives out her days, cared for in a nursing home. She is frail, and constantly in pain, and yet, her essence remains.

Forever smiling and laughing, my mother embraces the good and bad in life without judgment. She finds delight in the smallest thing, and in every person she meets. I have rarely seen her feeling sorry for herself, and if she does, it is with a “this too shall pass” attitude.

As a teenager, I would cringe when she would engage total strangers in conversation in an elevator, stating the obvious “Let’s all stare at the buttons now so as to not look at one another,” eliciting smiles and chuckles all around. A trip to the mall would involve multiple asides, as she’d say “hello” to this one, or “buck up” to another, likely all strangers, and definitely all warmed by her open warmth.

Her days were spent hovering over the stove or kitchen sink, a tea towel over her shoulder and a song bellowing from her lips, punctuated here and there by a tap dance.

Everything about my mother exudes joy.

Even today, when I call her at the Home, there will be a flurry of activity in the background – staff and peers drawn to her light. “They call me Mom!” she giggles.

As I lie here in my bed, fighting off the demons of depression, I think of my mom, and all that she has endured and take a page from her book.

“We can’t do anything about the things that happen to us,” she might say. “But we can choose the attitude with which we face them. Why cry when laughter is so much better?”

So today, I dedicate this page to my mother: my Laughing Buddha.

Who is the inspiration for joy in your life?

Day 257 “Watercourse”

You’d think that sleep would be my friend.
Like a lover she would seduce me,
lulling me into her black oblivion,
coaxing me into her ocean of darkness
a current of ever-changing images
gently rocking and soothing:
restoration.

You’d think that sleep would be my friend,
But she is a multi-armed demon
tossing me from shore to shore
taunting me with her liquid blackness
abandoning me, exhausted and spent
the last laps of receding tide washing over me,
as dawn’s first rays ignite.

If sleep is an ocean,
then I am the castaway,
capsized,
stranded,
hopeless.

How did this shipwreck occur?
What sin did I perpetuate,
To set me on this tumultuous course.
What sacrifice must my soul make
For sleep to once again be my friend?

Day 256 “Letters and Words”

Letters jostle for position
back-up
attempt to regroup
get detoured.

Frustration builds
and obstacles
pop-up –
cognition faltering.

Circuits are jumbled
pathways rerouting
patience exploding
expression lost.

Word recall
out of order
Word recognition
under construction.

Is there an exit
from this nightmare?

A Final Mystery

Is death a gentle reprieve,
a final release of suffering
a promised resting place?

Or is it contemplation
coloured by memories
demanding retribution?

Will death bring reunion
unleash forgiveness
shine with revelation?

Will one final earthly breath
call forth all the fragments of the soul
and restore wholeness?

I have witnessed death –
both embraced and unwanted –
snatch the spirit from its nest

felt the whoosh of escape
and a swirl of celebration,
known the peace that follows

witnessed the body, open-eyed
and open-mouthed
become a vacuum –

discarded membranes;
an impotent shell.

The spirit does not dwell there;
it lives on borrowed time.

Where it goes when all is done
remains life’s poignant mystery.

Ostracized

Disturbances alarm me
an intentional bystander
burying my head,
avoiding conflict.

Strife spills over
butting up against
personal limitations
forgetting myself
I engage
finding unforeseen strength,
defying odds
then remembering
letting go,
deflated.

I feel targeted
displaced rage
threatens me, stalks
and I am helpless
vulnerable.
My pleas for help
unheard, unanswered.

My life is at stake here people!
Pay attention!

Expectations are high
uplifted by progress;
promising road ahead-
I am out of sync
missing opportunities,
losing my place
forgotten

disability
limits me
I have no strength
but I have needs

Life taunts me
within arms reach
yet inaccessible –
rights diminished.

I crave life,
sustenance,
connection,

in isolation.

Day 253 Power

Hope glides
on the wings
of the early morning
dawn; awakening.

Whispered
promises:
new beginnings
bright possibilities.

Hope smiles
electric blue,
sunshine yellow
darkness receded.

Reality slams
the door closed
harsh recollection
shatters illusion.

Colours fade
to gray –
nothing
has changed.

Hope trails:
a gossamer thread;
a faint flutter;
refusing to die.

The soul
shuns reality’s
heavy-handed
dictation,
relying instead
on the wistful
subtleties:
a butterfly
in the wind.

Who wins
in this struggle
for absolute reign?

Do I surrender,
resign myself
to what is?

Or heed, what?
An impulse,
a glimpse?

Hope has
deceived me
before,

Reality has
proven equally
as unreliable.

Uncertainty.

Uncertainty
is the only power
that speaks the truth.

Day 250 “Sensory Stimulation”

When I was first diagnosed with ME/CFS, my doctor strongly advised against shopping in big box stores. “For at least a year,” she cautioned. Not one to comply, and still in a state of denial about the severity of my illness, I talked my husband into to taking me to a store that offered motorized carts for disabled shoppers. Half way through my adventure, I knew I was in trouble. It was not the distances one had to walk that presented the challenge (as I had naively thought), but the overwhelming sensory stimulation.

ME/CFS affects, among other things, the central nervous system. As I understand it, the nerves are not able to cope with any additional stress, and this includes the sensory input. My therapist defines it for my consideration as the amount of sensory load that my body can handle at any given time. By determining this, I can better manage my progress and avoid crashes.

Consequently, I exist in a bubble – fragrance-free, controlled lighting, minimal noise input, and reduced visual stimulus. I avoid either hot or cold foods, and am overly sensitive to touch. Minimal sensory stimulation has become my norm.

What frightens me is the thought of integrating back into modern life, where the senses are constantly accosted without thought for consequence. From my perspective, it takes a finely tuned nervous system to cope in our over-mechanized, image-popping, aurally-bombarded, scent-driven society. I marvel at those who can manage it, and my heart goes out to all who cannot.

The Same, But Broken

It is the state of fragility that blindsides me.
I am a strong woman.
Someone once told me I was courageous, but I cannot see it –
I have not chosen pain, grief,
illness.

The fragility is pervasive –
My body feels reduced to miniscule fibers:
stretched and torn, on the brink of brokenness.
Mind, overwhelmed, obsesses, but will not organize
or let go.
if only I could let go.
If you could see me I am weeping and not –
weeping from the frustration of the immediate impossibility
and unwilling to weep for the total loss.
It is beyond me.

Outside these walls life continues
and regards me with disgust/ indifference/ repulsion.
There is no equality for the ill and disabled.

And, yet….

In this state of rawness, stripped of “life”,
or rather, busy-ness,
I am as any other –

Just a soul trying to having a meaningful existence.

Maybe illness is the great equalizer.

(Image: background-pictures.picphotos.net)