Sidestepped comfort
dared to breach
personal boundaries
Knew it was a stretch
Uncouth, this bodily response
pain penetrating
Dark thoughts wrestling
inner rebel smirking
I gleaned a moment of freedom
But at what cost?
(ME/cfs is characterized by exhaustion following exertion. Post Exertional Malaise (PEM) is the result, causing symptoms to flare.)
People ask: “How can you be so sick; you’re a strong person?” Or I am too positive of a person – how is it possible?
What if it is because of these very things that life has chosen me for a master class – a spiritual quest – not for the weak of heart? What if it’s because I’m a good student?
(Image and art mine)
(Written during my bedbound years with ME/CFS)
May is Myalgic Encephalomyelitis awareness month. Also known as Chronic Fatigue Syndrome, this disease is characterized by exhaustion after exertion. The exertion can be physical -taking a shower; emotional – worrying or obsessing; or mental- filling out forms.
The best source of information about ME/cfs, as we call it, is the Bateman Horne Center. They offer resources for patients, caregivers, and the medical field.
Unfortunately, not much has changed since my diagnosis in 2014. Medical professionals continue, for the most part, to know little about this disease. It’s frustrating from the part of a sufferer, and discourages me from seeking help.
I’m sure I’m not alone.
A kidney stone, coupled with an infection has set me back five days – two trying to soldier through the pain, and three pursuing medical answers. Anyway, I’m on the mend, tired already of this foray into self-pity.
Tomorrow, I keep telling myself, is a new day.
(Image my own)
Ask me how I’m doing
and I’ll say “fine”, not
because I’m actually fine,
but because “fine” is the only
socially acceptable response.
If I said that I have been lying
here, for three hours now,
willing my body to move,
that would elicit unsolicited
advice and tarnish my “fine”.
I’d berate myself for breaking
my promise not to moan,
knowing that complaining
provokes a compulsive need
to fix, which just infuriates me
Because my concept of trying –
which is defined by getting dressed
each day – does not match trying
every new therapy, drug, exercise
offered by well-meaning but clueless
others, who may experience fatigue
at times, but have no understanding
of what is is to be exhausted after
something as simple as bathing,
let alone debating what I haven’t tried.
So, ask me how I’m feeling, and
I’ll say “fine” and we move on
to the weather, or the latest
movie must-see, and I can bask
in the warmth of the contact
carry the conversation into the
void of the rest of my day, smile
to think that I still have friends
who accept my “fine” even though
they know I am anything but…
(Art my own)
Illness has built
the bricks that bind
has birthed this wall
I am postnataly withdrawn.
If I emerge
it will be armed –
sharp comebacks
I am curious
about the caring
my rage running deep
Can you see it’s outlines –
zones broken out
of the practical
Quieting the hurt?
(Image AI generated)
Mother’s feet scream –
agony of her miserable condition,
underlying disease eating her.
My feet, free of calluses,
paddles slightly bent and fallen,
carry on with forgiving kindness.
Husband’s knees are red-hot pokers
shooting knife-sharp volts
with every rickety step.
Mine are knots in spindly
trunks that bear movement
graciously, allot me flexibility.
Father’s back grew weak
faltering in the end, hunched,
as if he’d born a cumbersome burden.
My back, not without its moaning,
carries me proudly erect –
like the spring sapling, winter endured.
Uncle’s heart beats erratically,
ceasing despite its mechanical support,
his life a testimony to modern science.
My heart flutters with expectancy,
aches with disappointment,
and soars with each new birdsong.
Sister’s tension rises,
the stiffness in her neck suffocating,
headaches blinding her vision.
My neck, slung now like a rooster’s,
puffs around my face like an old friend,
allows me the comfort of perspective.
Brother’s mind has seized,
lost somewhere between today
and yesteryear – never certain of either.
Mine, a constant churning cog,
gathers information, spews ideas
and bends in the face of creativity.
My eyes have seen suffering,
my hands throbbed with desire to help;
yet each bears their cross stoically,
and so I watch with compassion
and gratitude for the life I might have lived,
had my own vessel not been so blessed.
(Image my own)
