Tag: Myalgic Encephalomyelitis

Ride Along With Me (2)
disability · Humour · ME/ CFS · poetry · writing

Ride Along With Me (2)

V.J. Knutson13 Comments

Passenger, am I
backseat traveller
input unsolicited

I ride along.

Passenger, am I
view limited
direction speculative

I am not driving.

Driver is motivated
self-assured
I relax…until
temptation boards

Wait a minute; who invited temptation?

Driver is distracted
ego taking the wheel
Who’s paying attention?

I am not alone.

Lackadaisical dropout
sits with me – mooch
and weekend boozer

How did he get here?

Vehicle is outdated,
I warn, not a lot of room
ride at your own risk

They don’t make them like this anymore.

Crazy sister is here too
or maybe it’s me, ’cause I swear
I saw the ghost of another

It’s a good thing I’m not driving.

Darkness falling and out of gas
we stop and neon lights blare
Make a break for it!

Or… I could find a new driver.

Maybe put God at the wheel.
Would have to pay attention.
Oust the adulteress and sloth.

Be on my best behaviour.

Turn my vehicle into a golden chariot
powered by horses with wings of white
fly above all the obstacles

Headed for the Promised Land.

All fantasy, of course
I’m a backseat passenger
until vitality is restored

Then I’ll park this old model

And get a new one with GPS.

(Ride along with me first appeared her November 2014. This version is edited. Image my own.)

Spooning
creativity · disability · health · ME/ CFS · poetry

Spooning

V.J. Knutson34 Comments

I have measured out my life with coffee spoons.”

Source: “The Love Song of J. Alfred Prufrock” by T.S. Eliot

I line my spoons on the counter –
measures of the day’s reserves

one spoon for morning tea
with a side of emails read

a shower requires two or three
with a guarantee of needed rest

I’ll linger horizontal – added care
when an outing is in the plans

the thrill of venturing, and delight
of conversation shared wipes

the counter clean – I’ll crash
and crave for one spoon more

enough to get me into bed
pray tomorrow’s count the same.

(For Reena’s Exploration challenge, in which she challenges us to use one of the given lines of poetry.  Spooning is the term used for those of us with chronic illness who have limited energy.  Myalgic Encephalomyelitis is characterized by exhaustion after exertions.  My day starts with depleted energy, and I work from there.)

 

 

 

 

 

 

Watery Stagnation
change · disability · ME/ CFS · poetry

Watery Stagnation

V.J. Knutson8 Comments

Knee-deep wading
in electric yellow waters
of mud-laden stream

the coveted prize –
a mutated version –
Christ’s fish hovers

arms reach away –
have touched it –
recoiled out of fear.

Status is stagnation –
movement stymied
current lacking

Only the constant
thrum of winged
pests belligerence

punctures stillness,
irritates – its hard
shelled turquoise

body reminiscent
of Halcyon days,
Caribbean sunsets.

What evil virus has
cemented me here,
strangled nomadic

dreams, mired me
in polluted waters
imbued with cruel

uncertainty, faith-
less, immobilized
by incomprehensible?

(Watery Stagnation first appeared in August, 2016, and is edited here.

What Scars Remain?
disability · health · ME/ CFS · poetry · writing

What Scars Remain?

V.J. Knutson13 Comments

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.

Attack
health · ME/ CFS · poetry · Uncategorized

Attack

V.J. KnutsonLeave a comment

Compromised,
scaling a steep
dangerous
cliff wall

desiring relief,
a sign to indicate
a turning point
an exit

nothing worldly
can calm anxiety
uncertainty
life on hold

kindness
warms, reassures,
cannot counter
looming reality

stifled, begging
willing to deal
response absent
pleas hollow

surrendering
to fear is not an option
strength called for
and courage

love and compassion
the only sword
of significance
battling disease.

(May 12th is Myalgic Encephalomyelitis Awareness Day.  M.E. is a debilitating disease that attacks all systems in body leaving 25% of its victims permanently bed bound.  To date, due to lack of research, there is no effective treatment or cure, even though this disease effects over 1/2 million Canadians and many more worldwide.)