Proposal

Aging, I am
and disabled,
unreliability
trending

Escape is proposed
my oozing scars
beg a stand
discover determination

This slumbering
has become impulsive
need discipline
to quiet the pain

I am whiny
self-mothering
counselling bedrest
prone to coddling

need to shake off
this disoriented
weakened state –
escaped is proposed.

Investment Talk

It’s all about investment, really
life, I mean – make a deposit,
withdraw – hope that in the end
the gain is worth more than
the cost – a healthy balance.

Have been running deficits,
too focused on serving others,
practicing the art of giveaways –
incentives to capture attention
(affection too, if I’m honest.)

I’m every marketer’s dream –
impulsive, in the moment,
disbelieve that time is money –
illness having dumped time
on my lap in massive dollops

I’d say energy equates with
income, begets funds – all
redundant now, overdrawn
as I am, no safety deposit
securing balanced health.

Inner Turmoil

Outlets, I have plenty,
for the excrement that accumulates
within these challenged walls

I soak and scrub, and
paint my cabinets yellow
hoping the optimism will sink in

will match the green of my smile
the expansiveness of my exterior
but the in-dwellers are provoked

question ego’s motivation
in selling off the residence
shaking their sedentary slumber

there was respite in disability
an imposed seclusion that calmed
the worries, invited complacency

who can rest in this motorized
uprooted reality, and what purpose
will evolve from the overflow

of emotions that flood, flashes
of insecurity, defying wisdom
threatening to cloud our sunshine?

Anti-Social

Murmurs from the past –
tied to a former identity –
question my social absence

I have divorced that life,
that self, and yet, memories
dangle, challenge my validity

Once facilitator, now I shy away
hidden behind the curtain of illness
could offer suggestions for gathering

have a repertoire of ideas, stashed,
no doubt out-dated – so much of life
having surpassed me, even old selves.

(Photo from private collection)

Intuition

The body has a voice –
not silent, nor harsh –
it is a knowing.

When ego drives hard –
screaming ambition
demanding to be heard –

Block it out!

Let your body speak –
waves of understanding,
gut feelings, truth.

Logic has no place here –
book learning seldom serves
the needs of the soul –

Set it aside.

Listen to your body –
that pounding in the chest,
that sudden surge of vertigo.

Intuition is cellular –
ancient, ancestral instinct;
trust the voice within.

(I originally wrote this in October of 2014, while contemplating how I let myself become so ill.  Admittedly, I had for years ignored my body’s signals.  Be well all.)

 

 

#TimeForUnrest

Anxiety, like fog, closes in
suffocates, I gasp, fight for air –
this disease so pervasive, lungs
spasm, panic multiplies; help!

Tests, drugs – all speculative,
experimental – symptoms persist
absent treatment protocols, a cure;
so much ignorance, uncertainty

Lie down, they say, refer me
to psychology as if immobility
and exhaustion are tricks of mind,
an overactive emotional imagination.

I am sentenced to seclusion, sensory
deprivation, muscles, nerves, immunity
all defunct, cells failing to produce energy –
a lifeless, inert blob, cognition failing.

But I am not alone; millions of others,
also missing, untreated, abandoned –
but not giving up – Can you hear us?
grief oozing from our pours, unwilling

to be further shamed into silence –
our suffering may be invisible, our
voices weak, but the warriors among us
are beginning to speak – please listen!

(ME/CFS is a debilitating disease that affects millions worldwide.  Absence of funding restricts much needed research.  Not enough is known about this disease to help the many bedridden or homebound.  It affects people of all ages, including children.  In Canada, there are no treatment options, and often medical personnel are not educated about the disease, which can lead to harmful interventions.

Jennifer Brea has become the voice of ME/CFS due to her recent documentary, Unrest.  She can also be found on TedTalks, discussing the implications of having a disease not recognized in medical circles.  Unrest is an awarding winning documentary that sheds light on this disease.   It is apparently being shown on PBS Monday, January 8th.  It’s also available through iTunes.

Please watch.  If you or a loved one suffers from this disease, or any other mystery illness, the film may just trigger new understanding.  If you are a medical professional who has not heard of the disease, the documentary is very informative.)

The Pilgrimage

A soft-sided, well worn, briefcase
sits slouched in a closet corner,
one side agape, a red lanyard
hastily stuffed inside –
occupational identification.

A row of black, brown and gray
pumps line up beside it, a thin
layer of dust betraying idleness.

Silent, unblinking, a television
recedes into the wall, flanked
by images of smiling faces –
shadows of nostalgia.

Stacks of books and journals
rumour a once scholarly mind.

The woman, once defined
by these trivialities,
is no longer here.

She has been called to another purpose.

(The Pilgrimage was first written in December of 2014, as I came to terms with the loss of my career due to ME/CFS.  Now, as we embark on a new path, I find the poem has new relevance.  This version is edited from the original.)

 

 

A Case for Moderation

“Before illness,”  I tell my therapist, “I had things I was working on – I was engaged with life.  Now I can’t do any of that.  I feel useless.”

She nods.  “Yes, that is what illness does.”

I’d had two days of feeling better.  Two days of being able to sit up and actually do a bit of housework.  “I felt so good that I actually started to allow myself to make plans,”  I tell her, choking up.

“That is the trouble with this disease,”  she explains.  “Patients have good days, and they do things, and it sets them back.  You need to learn to enjoy the days you are feeling better, without increasing your activity.  Your body needs rest; rest is what is going to get you well again.”

I look away.  How can I tell her about the messages that have been haunting me these past days?

“I feel stripped of all purpose,”  I manage to confess.

“Ah,” she says knowingly.  “One of the things that we are able to do when we are well is avoid the voices in our head; without all that busyness we are alone with our demons.”

“Exactly!”  I love this woman!  “It sounds crazy, but I keep hearing my father’s voice.”

“What is he saying?”  She leans forward.

You don’t have any problems!  You don’t even know what problems are! ”  There were more too:  Time is money.  Waste not, want not.    I tell her about how he never allowed us to sleep in, made us get up and do drills on Saturday morning before cleaning the house.

th-1.jpeg“Your father wanted you to be strong, able to face whatever life threw at you.  What is missing from that picture is the message that home is the soft place to land.”

Her words strike a chord.  “That concept was foreign to me for most of my life,” I tell her.  “I never even conceived of it until I met Ric.  Isn’t that awful?”

She gives me a sad smile.  “The trouble with growing up in a family where work ethic is everything is that you are always living up to someone else’s expectations.  Your father set the bar high and to get there, you had negate all natural instincts.  You weren’t allowed to feel tired, sad, angry, etc.  All that would be pushed aside in order not to disappoint him.”

Even as she speaks, I see myself going to my room, disheartened by my feelings, wanting to hide – out of sorts.  Emotions were not welcome in our house; weakness was abhorred.

“Then you found yourself alone as a single mom with three kids.  There was no time for your needs.  No time to be sick, or rest, so you carried on out of necessity.”

“And I had my own business,”  I add to the list in my head.  “No possibility of taking time off there.”   To my therapist, I add:  “I don’t know how to banish the guilt.”

“Journal the messages when they pop up,”  she suggests.  “That way you can get them out of your head and onto paper where you can see how useless they are.  Tell yourself that by resting you are doing exactly what you need to be doing.  Getting better is all about listening to your body.”

“And when others ask me what I’ve done with my day…….?”

“Their questions are triggering you childhood demons.  You are hearing your father’s voice behind them.  Tell them you are doing exactly what you need to be doing to get well.  Leave it at that.”

I sigh.  For months now, I have felt like I have to justify my existence to everyone.  I have felt like such a failure.

“I have done the same thing to my children,”  I blurt out.

“Likely,”  she smiles.  “It’s all you’ve known.”

“Oh God,”  I moan.

“There is nothing wrong with a good work ethic as long as it’s balanced with proper rest.  It’s all about moderation.”

I have missed the moderation piece of life’s puzzle.

Will I ever learn?

 

Life Currently on Pause

Yesterday, I decided to pretend that the disease I suffer is not present.  Just for one night I wanted to take a break, be normal, live life. I am not talking big risks here people!  I am just talking a night of t.v. watching like in the old days, before I got sick.

“I’m still lying down, right?”  I convinced myself, hunkering in under the sheets.  “What can it hurt?”  That was 7:00 p.m.  At 11:00, I turned off the noise and distraction and retreated into sleep.

3:00 am the first repercussion hit me – constricted airways, choking for breath.  I staggered to the bathroom and my inhaler, then tried to go back to sleep.

No deal.  My overstimulated brain was locked on wired – replaying the details of the shows I’d watched over and over, like an ongoing, unsolvable debate.

I got up and made myself tea, and noticing a pronounced weakness, allowed my walker to support me.  I had overdone it.

I eventually fell back to sleep just after dawn, and now just coming up to noon, I have managed to get myself dressed.

Why is it so hard for me to learn this lesson?  My body/ mind/ emotions/ spirit have, through the vessel of this disorder (ME/CFS), sent me a clear and profound message:

P..A..U..S..E..!

So life, forgive me for opting out of participation right now – I am taking a sabbatical.