Ostracized

Disturbances alarm me
an intentional bystander
burying my head,
avoiding conflict.

Strife spills over
butting up against
personal limitations
forgetting myself
I engage
finding unforeseen strength,
defying odds
then remembering
letting go,
deflated.

I feel targeted
displaced rage
threatens me, stalks
and I am helpless
vulnerable.
My pleas for help
unheard, unanswered.

My life is at stake here people!
Pay attention!

Expectations are high
uplifted by progress;
promising road ahead-
I am out of sync
missing opportunities,
losing my place
forgotten

disability
limits me
I have no strength
but I have needs

Life taunts me
within arms reach
yet inaccessible –
rights diminished.

I crave life,
sustenance,
connection,

in isolation.

Day 253 Power

Hope glides
on the wings
of the early morning
dawn; awakening.

Whispered
promises:
new beginnings
bright possibilities.

Hope smiles
electric blue,
sunshine yellow
darkness receded.

Reality slams
the door closed
harsh recollection
shatters illusion.

Colours fade
to gray –
nothing
has changed.

Hope trails:
a gossamer thread;
a faint flutter;
refusing to die.

The soul
shuns reality’s
heavy-handed
dictation,
relying instead
on the wistful
subtleties:
a butterfly
in the wind.

Who wins
in this struggle
for absolute reign?

Do I surrender,
resign myself
to what is?

Or heed, what?
An impulse,
a glimpse?

Hope has
deceived me
before,

Reality has
proven equally
as unreliable.

Uncertainty.

Uncertainty
is the only power
that speaks the truth.

Day 250 “Sensory Stimulation”

When I was first diagnosed with ME/CFS, my doctor strongly advised against shopping in big box stores. “For at least a year,” she cautioned. Not one to comply, and still in a state of denial about the severity of my illness, I talked my husband into to taking me to a store that offered motorized carts for disabled shoppers. Half way through my adventure, I knew I was in trouble. It was not the distances one had to walk that presented the challenge (as I had naively thought), but the overwhelming sensory stimulation.

ME/CFS affects, among other things, the central nervous system. As I understand it, the nerves are not able to cope with any additional stress, and this includes the sensory input. My therapist defines it for my consideration as the amount of sensory load that my body can handle at any given time. By determining this, I can better manage my progress and avoid crashes.

Consequently, I exist in a bubble – fragrance-free, controlled lighting, minimal noise input, and reduced visual stimulus. I avoid either hot or cold foods, and am overly sensitive to touch. Minimal sensory stimulation has become my norm.

What frightens me is the thought of integrating back into modern life, where the senses are constantly accosted without thought for consequence. From my perspective, it takes a finely tuned nervous system to cope in our over-mechanized, image-popping, aurally-bombarded, scent-driven society. I marvel at those who can manage it, and my heart goes out to all who cannot.

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,
illness.

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)

 

 

 

 

 

 

Day 246 The Pilgrimage

A soft-sided, well-worn briefcase sits slouched in a corner closet,
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 their idleness.
Silent, unblinking a television set recedes into the wall,
flanked on either side by images of smiling faces,
shadows of nostalgia.
Stacks of books and journals rumour
a once scholarly mind.

The woman, to whom all these trivialities once
had relevance is no longer here.

She has been called to another purpose.

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.

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.

Reason is cellular –
ancient, ancestral instinct.
Trust the wisdom within.

(Image: www.huffingtonpost.com)

Embrace your intuition.

Sufficiency

My living room has beautiful big picture windows facing two directions, allotting me a full view of the neighbour’s front gardens to the north, and the constant comings and goings  on the  street in front of the house.  Lying on the couch with my morning cup of tea is how I like to greet the day.

On Sunday mornings, the rush of traffic is replaced by clusters of runners, with their long, sleek bodies, puffed out reddened faces, and self-satisfied grimaces.

“My wife had CFS,”  a man once told me, “but now she runs marathons.”

It is hard for me to believe.  The distance between my own physical capabilities and these weekend athletes far exceeds any race they might run, the copper-coloured legs of my sidekick walker remind me.

Maybe wheelchair races, I chuckle to myself.

Now that my life is confined to the four tiny rooms on the main floor of our home, I have new perspective.

I cannot remember a time when I did not feel lacking in my life – not enough hours in the day, not enough help, not enough money – but the truth is, in retrospect, I always had exactly what I needed.

Today, I do not have the legs to carry me swiftly on my way, nor do I have the energy to aspire to such feats, but I do have a home that I can easily navigate, surrounded by the endless beauty of Nature, and friends and family that truly care.

Abundance, I am discovering, is an attitude, not a state of material wealth.  It comes with the recognition that life is sufficiency, not lack.

 

Kindness Not Advice Needed For Ill

What is it about illness that invites so much input from others?  Everyone has an opinion and seem somehow emboldened by my vulnerability to express it, as if they have suddenly become the expert on all things health-related.

Since my diagnosis, I have been counselled to exercise more, eat more meat, eat no  meat, get magnetic therapy, see a psychic,  see a shrink (as it is surely all in my mind), and seek a second opinion.  All offered with the best of intentions, I am sure.

One friend even called from her therapist’s office and said she was on her way to get me, as he was positive he could help me.  “He says that what you’re doing is not enough,”  she told me excitedly.  “He has worked miracles with me.”

I have no doubt that he has helped her, and I bite back my desire to tell her that both he and she are being unbelievably arrogant as they have no idea what my course of treatment is at the moment, nor any idea what I have gone through to get to this point.

Diagnosis of ME/CFS does not happen haphazardly.  It comes after a series of specialists appointments, eliminating other diseases, and adding up to this particular one.  In my case, it has been four years of doctors, and testing, and worsening conditions that have led me to this point.  In the meantime, I have also been working with therapists and experts to find healthy solutions – specific to my ailments!

What I want to tell others is that while I appreciate their concern, the discussions drain me, and while their friendship is treasured, I have to limit my interactions, so would prefer to not keep going over this sensitive subject.   Trust me that healing is my number one priority, and that I am making healthy choices for myself.

Take a page from my friend, Naomi, who arrived for a visit last Monday.

“I can only stay for a quick visit,”  she announced, then steered the conversation to a discussion about our mutual interest – grandchildren.  After a precise amount of time, she said she had to go, and added:

“I know you are doing everything you can to get better, and I know you will be successful.”

Uplifted by her visit and vote of confidence, I saw her to the door, then headed for the fridge to find something for lunch.  Imagine my surprise and delight to find a fridge full of fresh fruit, and a ready prepared dinner, plus a few other special treats.

In her unassuming way, Naomi brought me great comfort that day.   Her actions, not just her words, spoke volumes in support of my healing.