Category: disability

Spirit Stands Strong

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

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

My daughter, ever compassionate,
reaches out for me with horror-filled eyes
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 – that is not me –
it is only an illusion –
a vessel – temporarily fettered.

I am, in essence, beside you –
ambitions and desires intact.
Feel me there, tall and proud.

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

(I first wrote this poem in August of 2015, when efforts to sit up and visit with friends caused a collapse.  I wrote it as reassurance for my family that the woman they knew was still strong.  I post here now as a reminder to myself – of how far I have come, and how strong my spirit remains.)

Chronic Companion

She sits with me at breakfast,
follows me to the park,
hovers on the drive home,
celebrates when I lie down,
snuggles in with warming pad,
and moans…

Not a companion
I would have chosen,
preferred the active,
athletic life, and yet

She complains with me
in the afternoon, invites
excuses during dinner,
grounds me in the evenings
and tosses me at bedtime

Not a companion
I would have chosen,
but at least I’ll grant her this –
she’s chronically devoted.

 

 

The Queen Is Missing

She’s not in the kitchen
presiding over preparations,
thriving amidst the chatter,
tutting away thieving fingers.

She’s not in the classroom,
mastering subjects,
upholding order,
ruling with charitable hand.

Nor is she at social affairs,
head bent in rapt attention,
smiling cordially,
gracious with compassion.

The Queen is missing –
the poise and composure
that marked her carriage
has vanished without a trace.

Don’t ask the old woman
tottering down the lane,
stooped and stumbling –
she’s not all there.

Her mind’s a trickster,
her ego a petulant child,
unwilling to concede wrong –
she’s merely the court jester.

(The Queen is Missing first appeared August of 2015.)

 

Dear Charlotte Perkins Gilman (Yellow Wallpaper)

I have examined your wallpaper,
discussed the scholarly attributes
of shades of yellow, traced the edges
of your unravelling with my mind,
argued the merits of Gothic horror;

marvelled at the brilliance of wording,
the courage to define the nature of
feminine madness, the boldness to
highlight inequalities long before the
establishment of a Person’s Act.

Forgive me, but I need to set aside
this keyboard for a moment, for I tire
easily, am suffering from an exhaustion
that is systemic and calls for elimination
of all stimulus in favour of rest, you see

I share your sentence of confinement,
isolated to a room with windows, my
mind wandering to ancestral gardens,
contemplating shadows and movement
cognizant of underlying forces, creeping.

My husband has just left, dear man, having
checked on me, taking on my burden,
concerned that I am not sleeping at night
thinks that by reading and rereading your
words I am only fueling an already over-

active imagination; begging me to be still
as the doctor has recommended; but I am
burning to tell you that time has no
relevance between us and that you and I
exist simultaneously – a secret we dare

not confess – how correct your impulse
that there was more than one woman,
that we are many, barred by the designs
of society, papered over by irrational,
outdated shades of yellow, lacking

symmetry, or sensibility, suffocating
our creativity, tortuously contorting
ourselves to been seen, accepted.
It is the smell of our discordant souls
that pervades your consciousness

the rotted withering of  a stifled
existence – a yellowed existence –
once hopeful, sunny, now molding
mucous, desperately torn away
at the edges, pleading for escape

How grateful I am that you see –
may I call you Charlotte – that you
have smelled the angst, witnessed
the struggle, are willing to tear at
the sticking places, to set us free.

(I wrote this in the throes of severe M.E. – sleepless nights, coupled with systemic exhaustion and endless confinement to bed brought to mind the short story :  Yellow Wallpaper.  I submit it here and am linking up with Brave and Reckless’ challenge based on Charlotte Perkins Gilman’s piece)

All But Comatose

If death is sleep
then surely I am close –
body leaden
refuses to budge,
brain a slow crawl

I would feel something –
remorse, fear, confusion –
but the weight of slumber
has numbed senses,
reaction sludge

only a drum, drum
of heart harkens
life’s continued spark –
What thread of will
keeps me hanging on,
surely sleep preferable?

(Myalgic Encephalomyelitis is characterized by exhaustion after exertion.  The fatigue is systemic. )

The Toll

Am not the woman my children once called Mother –
can see the disappointment in their anger-blotched
expressions, feel the constraint in their voices –

distance between us tugs on my heart, plays with
my conscience, as if illness is choice – a contrived
plot to rob them of their expectations –

hope they can forgive me before it’s too late;
hope they can forgive themselves.

Levitating

Suits meet, banter about deals,
conspiratorial heads bent, deep
throaty laughs, confidence reeking.

I glide by, imperceptibly, am a whisper
on the window of their intensity.

Families congregate on front lawns,
squeals of delight trailing blurs,
adult murmurs lost in shrill echoes.

I float on by, an ethereal witness,
no more than the wisp of a cloud.

Only a dog, unleashed, catches
a whiff of something inexplicable,
gives chase, nips at nothingness.

I am elusive, lacking substance,
he retreats bewildered, interest lost.

Am I somehow flawed,  I wonder
aloud to the gathering of females
draped across my bed, intrigued

Have landed now, solidly connected
to this other-abled reality, grounded.

Intimate discussions of life’s mystery
peaks interest, all want to learn to fly,
beg me to demonstrate, inspired to try.

Detachment is the secret, I reveal;
just launch yourself and release.

Instincts grasp to offer support,
arms reaching out in assistance,
roots hindering their deliverance.

Alone, I swirl above reeling minds
dissolve into the mist, am free.

(It’s poetics night at dVerse and our host, Gina, asks us to consider our poetic hum – what duality we lead.  For three years, I lived an isolated, bedridden existence, while the rest of the world hummed along (pun intended).  It was fertile ground for writing.  The poem, Levitating, was written 3 years ago, and immediately came to mind when I read the prompt.)

 

What Scars Remain?

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
backroom, 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?

(For Reena’s Exploration Challenge.  Reena gives us a choice of prompts.  I have chosen  ‘disorientation’.  What Scars Remain was first written in August 2016.