What Remains?

Should I escape these shackles –
manage to re-surface, swim
despite this weakened condition
against the currents of disability,
find myself once again on the
solid grounds of civilization –
will I be embraced with cheers
of victory, or slotted into some
back room, reserved for the fallen,
spoken to in hushed tones,
forever handled at arms length,
an object to be feared?

And, if I manage to fight these
bonds that for so long have
threatened to annihilate,
will I have the bravery to face
the calling that once defined me,
shake off the cobwebs of
disorientation, defy the
certainty of unpreparedness,
draw from the well of past
experiences and rise to
a new battle, proving the
validity of my return?

Or, with freedom, do I look
to opportunity, clear the slate
of former ambitions, rewrite
the pages of my destiny,
embrace an attitude of
rebirth, decide to relinquish
the sword, cut my losses
and redefine a new, gentler
way of being in the world,
less dependent on a system
which undoubtedly propelled
this descent in the first place?

(My art, entitled Abandoned Forest, acrylic. This poem first appeared in 2016, when after two years bedridden with Myalgic Encephalomyelitis, I pondered what would become of me. As part of a support group now, I recognize this same struggle in others plagued by chronic illness. Personally, I eventually found my answer in the third stanza.)

Frost Bitten

Gnarly, these withered limbs,
this vessel more rigidity than flow,
Winter upon me – a permanent clouding

Sunnier days passed –
oh how vivid the imagination
when blue skies met green grass,
no hindrances

Old dreams hover, tethered to fences –
defences to camouflage vulnerability,
offences to keep my paths cleared

Find balance in isolation –
an old tree, past her prime

Would cut loose this precarious hold
on all things fantastical, but
fear the act a harbinger

So, I bide my days
in this frigid limbo,
and hold on.

(Originally appeared January, 2019. Image my own)

Teach Me

Teach me reverence;
I am losing ground

Children adulting,
mothering in a void

Teach me acceptance
disability’s waters flood

I am in the margins,
an afterthought…

I concede life changes
release control…

Passion begs an outlet;
I am worn…

And I am open…
Teach me.

(Teach Me first appeared here January 2020. Edited for this edition. Art my own)

We Are Mermaids

Severity of disease
defines degree of marginalization

Who will enter the darkness;
rub shoulders with despair?

Disability is entrancing
but doesn’t invite engagement

We are mythical creatures,
those of us whom fate has chosen

Passage aborted, movement
encumbered, we fantasize

about normalcy –
to be forgiven, just a day

That we might shatter
our barricades, and bound

carefree into the ocean waves –
like the mermaids that we are.

(Image my own, aided by AI)

Visible, Yet Hidden

I am visible, yet hiding –
balancing a vitality-blocking
disorder that renders me
inanimate, repulsive –

Who doesn’t flinch
in the face of deviancy?

Creativity obsesses
grasps hope that courage
will annihilate the beast,
that resourcefulness
is all it takes to overcome –
Hold on!  it cries, nestled
deep within the grief –

Oh, you think you see me,
but I assure you, my friend,
you do not – I am rebel,
lost in isolation, vulnerability
fantasizing revolution –

Resolve trapped between
the exaggeration of infinite
possibility and the unremarkable
defence of compulsion to survive –
thrive even, if spirit was not
so aghast at current setbacks.

(Image my own)

Harmonics

6:30 a.m. alarm sounds.
“Time to wake up!” Compliance commands.
“Just a little longer,” Sensibility suggests.
Guilt, like an incessantly annoying child
tugs on Conscience:
“Come on; there’s lots to do!”
Body does not respond.

Sleep wins
and dreams come:
homeless,
relying on friends,
no food,
backed up toilet,
children’s wide eyes
fearfully imploring:
When is this all going to end?

Guild propels a return to consciousness.

8:25 a.m.
“Up and at ’em! There’s a good soldier!”
Compliance attempts to be chipper.
“There’s really nothing more important than rest,”Sensibility suggests.
“Can’t lie in bed all day!” Guilt counters.
But body is MIA.

Dreams resurface:
Setting up house in a thoroughfare
people coming and going, oblivious to intrusion
co-workers indifferent,
eyes scolding – convicting…

Guilt mutates to rage,
Body chokes, gasps,
reaches for inhaler
sucking in desperate air.

11:11 a.m.
“That’s it! Up you get!”
“No! No! Rest is needed!”
“The day is wasted! There’s no getting it back!”

“Silence!”
A new voice emerges.

A collective intake of breath.

“Breathe,” comes the message. “Just breathe.”

A unified sigh.

“And breathe again.”

Tempers cool, and emotions begin to settle.

“What’s going on?” Guilt wonders.
“Just trying to stick to routine,” Compliance defends.
“It’s always been this way.”
“But she’s ill now,” Sensibility adds, “and there needs to be concessions.”

“Breathe,” the voice reasserts, and all sigh again.
“Just be in the stillness of the moment.”

Stillness has no voice.
Its language is compassion and infinite,
infinite wisdom.

“…and surrender.”

Compliance sobs with the release of such enormous obligation.
Sensibility gratefully gives over the burden of responsibility,
and Guilt…well Guilt is little,
and happily snuggles up to Unconditional Love.

“There, there,” Voice soothes. “Isn’t harmony so much better?”

Body concurs and rises out of bed.

(Harmonics first appeared here September 2014, five months after illness left me bedridden. Image my own)

Distance

Even in togetherness there is distance.

I am alone.

A central figure, distracted,
aiming for contact –
unable to eviscerate control –
repeatedly producing a singular confusion.

Define success
Is it the one on the top,
the know-it-all,
or are these the mechanisms
of estrangement?

I am unable to discern-
stability never more than a dalliance.

The pavement ahead whispers
promises of a sense of belonging…
Can I tolerate the quest?

Unfulfilled, I am protective
fear off-shoots of depression,
shield tender inner places…

Bring on change, there are others
watching, looking to me
as an example.

I can strive
on their behalf

Never alone.

Always distances to cross.

(Distance first appeared here February, 2017. Image my own)

Some Days

Why am I courting judgment
like an old friend,
popping in unexpectedly?

She overlooks my needs,
barges in reeking
of stale perfume, and
energy-sucking shoulds

I crave the subtle tones of compassion –
quiet whispers over tea –
a gentle pat, words of encouragement

But, truth be told,
I squirm at even this –
hate vulnerability,
hate this weakness on display,
this chronic, fucking disability

Seems I have dressed myself
in judgment’s cloaks,
walk in the pinched shoes
of expectations too tight

No wonder I’m exhausted,
am dying…numbed
to my own drama.

(Image my own)

My Spirit Stands Strong

Progress, seldom linear,
tosses me into unexpected decline,
stranded and incapacitated.

My son with labour-hardened arms
leaps to my side, steadying me
and I feel the fear in his caring grip

My daughter, ever compassionate,
reaches out, eyes filled with horror
as my body crumples onto the bed.

My husband, my oak, seeks to comfort
his voice betraying the helplessness
this futile predicament imposes.

Beloveds, I know that you see me
this dis-abled, non-functioning shell
weakened and sickly, lying on this bed

Do not be deceived-
it is only an illusion –
vessel temporarily fettered

I am in essence, as before
ambitions and desires intact
hold this version of me

Sense the wholeness of my being
the woman I am yet to be –
my spirit stands strong.

(My Spirit Stands Strong first appeared here August, 2015; edited for this version.
Image my own)