Disability’s Dilemnas

Clutter defines my surroundings:
accumulation intended to simplify
only complicates, suffocates.

I am roommate, burden, dependent
confined to a singular existence
no longer lover, wife, companion.

While I lament the past –
ghosts of horrors and indecencies –
he drinks to forget lost dreams.

We have vowed to mend the cracks
carefully secured our footing
and yet our foundations rots.

Is it our over-active need to please
or the cold civility of our interactions
that causes us to withdraw?

My mind drowns me with shoulds
that my body can’t possibly fulfill,
guilt flooding my conscience.

How do we reconcile this distance
imposed by so much tragedy,
right the impotency of loss?

Life rolls on and I with it
humour and meditated calm
wrangling doubt and criticism.

He wears the projections
of my dissatisfaction: unresolved
remnants of old wounds resurfaced.

I can no longer ignore my needs
and reel at the mounting imbalance
grasping for sustenance and equilibrium.

Pulling away, I stubbornly proclaim
self-reliance, hindering progress
endangering self for dubious promises.

These life-altered eyes perceiving
only disappointing, unpalatable options
grasp for an end to this perpetual ache.

I am lost, disoriented, tired
communication clouded by fear
I hardly understand myself.

There is no solid footing on
a voyage as rocky as ours,
no answers to allay uncertainty.

Now is not a time for walls,
tenderness alone will guard our hearts
and patience lighten the way.

A Child’s Grief

I didn’t cry when you died in that fire,
you and your sisters and brother.
I didn’t cry when we saw the images on the news –
the charred remains of your house,
four stretchers with black tarps being carried from the scene.
I didn’t cry when we all crowded around the coffin –
one built for four – your bodies reduced to nothing –
family members wailing in disbelief.
I didn’t cry, because I couldn’t.

Your bright eyes haunted me –
that impish smile of yours
cutting through my soul
taunting me, as you always did –
your quick tongue and high energy
dancing around me, making my head spin –
raising my ire until I could take no more.I wish you were dead, Billy!
I’d said it out loud.
Said it in front of everyone.
Said it with spite and meant it.
Said it, only days before the fire.

I know they know.
I can tell by the way they all hold each other,
and cry into their handkerchiefs
and don’t look at me.
I can tell they know it is my fault.
I know it is my fault.
I didn’t really mean it, Billy.
I didn’t really mean it, God.
We were just playing around.
Billy and me, it’s how we are.
We were just fooling.
Billy’d always make me mad,
then we’d make up – everytime
I swear.
Please God, make it not so.
I won’t fight with him anymore, I promise.
I only fight with him ’cause I like him.
You know how it is with boys and girls.
Billy’s my cousin.  I love him.
Please send him back God.
I’ll be good and learn to tame my temper –
Mommy always tells me to watch my temper –
I’ll be good, you’ll see.
I didn’t mean for you to kill all of them –
well…I didn’t really mean for any of them –
it’s just something you say –
when you’re ten and don’t know any better.

The Same, But Broken

It is the state of fragility that blindsides me.
I am a strong woman.
Someone once told me I was courageous, but I cannot see it –
I have not chosen pain, grief,

The fragility is pervasive –
My body feels reduced to miniscule fibers:
stretched and torn, on the brink of brokenness.
Mind, overwhelmed, obsesses, but will not organize
or let go.
if only I could let go.
If you could see me I am weeping and not –
weeping from the frustration of the immediate impossibility
and unwilling to weep for the total loss.
It is beyond me.

Outside these walls life continues
and regards me with disgust/ indifference/ repulsion.
There is no equality for the ill and disabled.

And, yet….

In this state of rawness, stripped of “life”,
or rather, busy-ness,
I am as any other –

Just a soul trying to having a meaningful existence.

Maybe illness is the great equalizer.

(Image: background-pictures.picphotos.net)







Adjusting to Life with ME/CFS

(Originally published October, 2014)

The news from the doctor was not so good today, or maybe it is that this news was no different from past visits, but my mind can only absorb the hard stuff in stages.

“I seem to be getting worse, not better.” I told her.

“That’s how it is often how it is with this disease,” she consoled. “Sometimes you have to hit bottom before you start climbing back up.”

th.jpgI read my growing list of concerns: sleep remains a problem; eating is often accompanied by pain and abdominal swelling; I have painful swelling in my groin; breathing continues to be difficult; and my legs are unreliable.  Headaches, heart palpitations, sweating when upright, dizziness and flu-like symptoms.  I shake if I try to do anything standing, such as chopping vegetables.  I feel like I’m not getting anywhere.

She nods with each item, recording it in her files, and occasionally asking for clarification. “All typical symptoms,” she attempts to reassure me.  “Set a timer for standing:  try seven minutes.”

“Barely time to prep food,” I mutter.

“Buy food already prepared,”  she suggests.  “And make sure you are sitting with your feet up for meals.”

“Not the table?”  Eating at the table with my husband was the one bit of normalcy I was trying to hold onto.

“Do you have a lazy boy?  Try using it for meals.”  I do not have a lazy boy upstairs.  I will have to eat in bed.

“Set a timer for phone conversations and visits; they are also exhausting.”  I have noticed.

I have been tracking my daily activities, symptoms, and energy levels.  She scans my past four weeks:  nothing but chaos when I examine it.

“I see T.V. quite a bit.”  she shakes her head.  “T.V. is too draining.  Limit it to one hour per day.  Preferably commercial-free.  I’d rather see you writing than spending time on T.V.”

“It is a lot of noise,”  I agree.

In answer to my unasked question, she continues:

“Lying flat with your eyes closed is the best.  Listening to soft music is okay, and maybe books on tape if reading is difficult.  I also think it is time you consider using a walker.  Definitely a wheelchair when you go out anywhere.”

“Will I get better?”

th-1.jpg“In a year you might see a return of energy, but not likely more than twenty-five per cent – hardly enough to consider working.  It takes time.”

The crushing in my chest when I leave is emotional.  You will have to grieve the life you have lost, I remember my therapist saying.  Today, I understand her warning.

Home again, I crawl into bed and try to breath through the heaviness that bears down on me.  Sobs release some of the oppressiveness, but I know it will linger for a while.

Healing is a shift in perspective, I always used to say.  Where is the new perspective here?

Well, I tell myself, Look at the bright side:  I won’t have to worry about wearing make up for a while, so my skin will get a break.  And I’ll have time to let my grey grow in without anyone noticing.  Think of the money I’ll save on clothes.

My twisted sense of humour always comes out at the worst of times.

If talking tires me, then maybe I’m going to learn to be a good listener.  That can’t hurt, right?

And wait!  Didn’t she say she would actually prefer it if I wrote instead of watching television!  You mean, maybe for the first time in my life, writing can become a routine and not an ocassional self-indulgence?  th-2

Could it be that in the very moment I lose my legs, I gain wings?!

Ah, life!