Tag: memoir

Oh, To Dream

I dream of waking before the dawn,
preparing for my day with proficiency,
professionally preened and on the go.

In reality, I see the early light of day
through an insomnia-induced haze,
or miss it altogether, unable to rise.

I will carelessly tie my hair back,
and moan at my image, forgoing cosmetics –
no one will see me, after all.

If I dress, it will be for comfort,
elasticized waistline compensating for swelling,
soft fabrics to soothe the burning aches.

In my dream it is the first day of school,
and I am excited and anxious,
caught up in the camaraderie of the moment.

I awake to the resounding silence of solitude,
no schedules await me, no colleagues
exchanging pleasantries, communal conspiracy absent.

I will pace myself, shuffling
between bed and simple tasks,
a cup of tea, maybe some writing.

I drive in my dream, a shiny red car
in which I glide through the streets
and park with the pride of knowing it awaits.

Its been years since I’ve felt the freedom
and independence of self-chauffeuring,
reliant on the more able-bodied, sharply cognizant.

It’s a rare occasion that rouses me from
this compelled complacency, enough
to venture into the hyper-stimulating world.

Disability has closed around me,
limiting experience, restricting imagination,
until I dream – and am whole again.

My Spirit Stands Strong

Progress – seldom linear –
tosses me into unexpected decline –
stranded and incapacitated.

My son – with labour-hardened strength
leaps to my side, steadying me
and I feel the fear in his caring grip.

My daughter, ever compassionate,
reaches out for me with horror-filled eyes
as my body crumples onto the bed.

My husband, my oak, seeks to comfort
his voice betraying the helplessness
this futile predicament imposes.

Beloveds, I know that you see me
this dis-abled, non-functioning shell
weakened and sickly, lying on this bed.

Do not be deceived – that is not me –
it is only an illusion –
a vessel – temporarily fettered.

I am, in essence, beside you –
ambitions and desires intact.
Feel me there, tall and proud.

Sense the wholeness of my being
remember me for the woman I am yet to be –
My spirit stands strong.

A Mountain of Grief

I exist in the spaces –
crushed and flattened –
between the rocks that form
this mountain of grief.

Each sorrowful fragment
petrified,  polished –
a collection of coldness
hardened and maintained.
I’ve never known how to grieve.

How do I shed the weightiness –
crawl out from the crevices –
breathe new life into myself?

Should I try to scale the mound?
Conquer my emotions?
Raise a flag to victory
and ultimate denial?

Or, one by one,
should I examine
and relive the losses
counting them till my head spins
and my heart beats no more?

Lacking the strength to do either
I sit and feel the hollow agony –
the overwhelming numbness
that precedes movement.

I live in the cracks
of this precariously constructed
shroud of stones –
a self-imposed prison –
and pray for resurrection.

Day 266 “Return To The One”

Lethargic limbs
immobilize
while swarms
of thoughts
like predatory
insects
buzz
about
threatening
to invade
crevices
of the mind.

Imaginary nets
fail to repel
escape eludes
breathe
breathe
visualize peace
dissolve chaos
surrender
to source
return
to the one.

Confessions From The Sick Bed

Before I was sick,
I counted the days and hours,
not because of drudgery –
I loved my job –
because I had stretched myself
beyond normal limitations.

Before I was sick,
I wore responsibility
like a superhero,
and defined by work,
prioritized tasks
above well-being.

Before I was sick,
I joked with others
about the disabled
lounging around,
living the life of leisure,
usurping the system.

Before I was sick,
I prided myself on saying “yes”,
being dependable,
loyal to a fault,
a friend to all.
I thought I was invincible.

When I started to get sick
I trudged from doctor to doctor,
underwent tests,
and humiliation,
learned to doubt myself,
and turned the blame inward.

When I started to get sick,
I chastised myself
for being overweight
and not exercising enough,
and stopped eating carbs,
and pushed harder.

When I started to get sick,
I ignored my body,
failed to set boundaries,
continued to eat on the run,
and felt ashamed
that I had let myself go.

When I started to get sick,
I was wracked with guilt
for the compromises
I had to make,
failing to juggle
so many obligations.

Now that I am sick,
I value more than ever
the importance of priorities,
recognizing that well-being
always proceeds well-doing,
and appreciate my body’s voice.

Now that I am sick,
I understand that work
does not define me,
and disappointing others
is a reality in life.
I am not invincible.

Now that I am sick,
I’ve learned that richness
is a quality of living
and not a figure
in a bank balance.
Happiness, the same.

Now that I am sick,
discernment defines
the relationships I desire,
no longer willing
to negate self
for the love of others.

Now that I am sick,
I no longer pretend,
or reach to meet standards
that fail to sustain me;
I have a new set of expectations
and am learning to be.

Now that I am sick,
I see with compassion
how insecurity
and a longing for approval
drove me to demise,
always failing in my mind.

Now that I am sick,
I pray that wisdom,
and humility
will guide my recovery,
and that life will await
this metamorphosis in me.

Life Challenges Continued

I started this blog four years ago while awaiting the results of a lumpectomy, facing the possibility of cancer and questioning life.   I ducked the bullet, but a year later my husband was not so lucky – he started treatment for Stage III prostate cancer.  Then, to complicate matters, he ruptured his quad tendon and needed reparative surgery, which had to be repeated ten weeks later when he re-injured.  The second surgery became infected and after a nightmare six months and five more operations, he was finally on the mend.  We thought the worse was behind us until I was struck down by a life altering debilitating illness that has confined me to home.  Roles in our house reversed and after a year of caring for my husband, he now has to look after me.  It is a reality that we have learned to accept, believing that the worst is behind us.

We have been naive.

A recent visit to the doctor for a routine physical has resulted in a barrage of further tests and Thor finds himself back in the care of the specialist who originally delivered the cancer diagnosis.  “There’s only a fifteen percent chance that this is cancer,” the doctor has told him, but we’ve both heard that before, and somehow, we are not as confident this time.

We are too familiar with all the signs.

So, as I write this, we are back to that awful place of waiting:  waiting for the tests that will confirm or allay our fears; waiting to know if life will be put on hold yet again; waiting to know when it is safe to plan again.

Are we being tested?  Is there opportunity in the midst of all this anguish, or is life just a random draw, and we have pulled the short straw?

In the end, we really have no control over what happens to us, and while we would not have chosen this path, there is not much we can do to change it.

We will put in our time these next few weeks, immersing ourselves in trivial distractions,
desperately trying to think about anything but the worse that can happen.  “One step at a time,” we tell ourselves.

Forgive us if we falter in our obligations, or if we appear distant or disinterested.  We have a lot on our minds.

A Trip to the ER

I have just returned from a record-breaking (in my history) trip to the emergency room and back, and as with all adventures in life, I learned something.

I experienced first hand the ignorance of the medical world concerning ME/CFS.  No wonder it took years to get a diagnosis.

Please understand that making the choice to go to the hospital is a big one for me – with an intolerance for sitting or standing, I could not bear the thought of sitting and waiting for hours on end – as is typical for our emergency rooms.  Imagine then, my surprise (and relief) when they took me right in and from the triage examination, rushed me into a bed.

A resident saw me within minutes, and before an hour had passed, I was hooked up to an IV and receiving fluids for dehydration and nausea.  Once vitals were confirmed stabilized, they had me on my way – all in under four hours.

The staff was charming, attentive, and I felt, really made an effort to understand what was going on with me, but they just did not know anything about ME, asking me to repeat what it stood for several times and even asking how I got such a diagnosis.  They didn’t appear skeptical, just genuinely interested, but considering this disease is more prevalent than breast cancer, it does beg the question:  How is it that no one knows?

Living with ME/CFS is an extreme act of faith.  The symptoms come and go, fluctuating between mild and severe and seldom amount to anything tangible in medical tests, creating frustration for everyone involved – especially my loved ones who wish so desperately for an end to this disease.

I saw four different cardiologists, for example, when I was trying to find the cause of my rapid heart rate.  The first told me I had a rare arrhythmia that I could treat with diet and exercise, the second told me that I did not have a heart problem and basically wasted his time, and the third that I am likely over-sensitive.  The fourth decided it was an intolerance for pain medication that was causing the problem, and to some extent, he was correct.  I now know that the increase in heart rate is related to orthostatic intolerance.  My pulse rate lying down is typically between 84-94 bpm, but increases to 116 or so when sitting, and 137 when standing.

I had a similar experience with continued respiratory problems.  In 2006,  I seemed to have a cold that would not go away.  It was the year I had returned to school, so I wrote it off as a side effect of working with children.  Then one day in March, I just could not catch a breath no matter what I did.  As I’d had casual bouts of asthma in the past, I was referred to the Asthma Clinic at a local hospital.  Testing reconfirmed a number of allergies, both environmental and food related and four years of visits to adjust medication followed.  On every visit, my doctor – a lovely man with a warm wit- would wonder aloud if this was really just asthma.  Now, I know it was a combination of asthma and ME.  Taking medications is not enough to ensure ease in breathing – pacing myself and avoiding over-exertion is key.

Today’s visit was for ongoing abdominal problems.  IBS was suggested after a colonoscopy four years ago, but the continued bloating and ongoing pain has become concerning.  A blocked bile duct was detected in another test, and an antacid prescribed.  Food sensitivities have been noted and I have adjusted my diet accordingly, but the difficulties persist.  “It’s likely just a virus,” they told me yesterday.  And, in part, they are probably right, but there is such a persistent, underlying wrongness to how my abdomen functions that I am not satisfied we have gotten to the bottom of this problem.  Apart from two forkfuls of rice and a couple of gluten-free crackers, I have had no solid  (or liquid) food in five days – the pain that follows is too intense.  There is no quality of life when the pleasure of a decent meal cannot even be savoured.

Living with chronic illness is discovering that much of medicine is still in the formative stages – uncertainty punctuated with educated guesses – so much yet to be learned.  And, if you’ll indulge this me this moment of feeling sorry for myself, I am a discontented guinea pig.

Dump Truck

Cumbersome and heavyweight,
determination driving,
I roll with a shudder,
ignoring limitations,
promising caution,
pretending control.

Road blocks, detours,
and bustle –
everywhere bustle!
Unavoidable confusion.

(Control, it seems, is illusory.
How had I not anticipated this?)

Rattled intentions-
delayed reactions –
slowed starts.
I am an abomination.

Children dart about,
heightening my angst.
Go-getters impatient,
rev at my sluggishness.

(Get out of the way!)

Compliance compels, but
the girth of my metal
inevitably obstructs –
Misfits are not welcome here.

My load is heavy –
grievances topped with
personal dramas, blended
with ingested toxins.

(Warning: compassion is low!)

My apologetic countenance
masks underlying menace –
Do not misread hesitation.
A beast is poised to strike.

(Control, remember, is illusory.)

Labyrinth

I am a tourist in this life.
Expectations of enlightenment,
education and entertainment,
spur me forward with excited anticipation.
Feed me discovery in ordered exhibits,
carefully construed facades of control,
garner me with a sense of security:
I am an eager explorer, readily engaged.

By the time wariness enter my consciousness,
I am too far in, committed to the direction,
unable to turn back – the folly of my naiveté
taking hold.  I feel the panic set in – forge ahead –
now driven by fear, not wonder – I see a light.
Relief! Temporarily. All is not as it seems.
Security is not solid. Boundaries are blurred.
I have ventured too deep into this maze of horror.

Injustice and lawlessness surround me –
relentless battery, unbridled savagery,
mummified memories claw at my soul.
I am not willing to die this way-
my screams powerless against a
raging reality, willing my demise.
Is there no sympathy to be had?
The nightmare continues.

I am a student of life,
reluctantly enrolled in a program
that I should have already mastered,
seeking enlightenment in the tucked
away crevices of existence,
crowding in with other lost souls –
expectant, dubious, involuntary –
arrogance and superiority my walls.

I sit amongst the delinquents.
Cynicism blocks flowery attempts
to win me over, nor am I swayed
by blatant appeals to primitive appetites.
I have grown callous, and calculated
hardened by my journey – and when
the lesson comes, delivered in an
unfamiliar tongue – I deflect.

But wait. Despite my hard-heartedness –
hard-headedness – truth seeps
into the corners of my mind and
with coinciding dismay and delight
I realize the folly of my ignorance:
In the struggle between survival
and striving, so much has been overlooked.
I am finding my way out of the maze.

Accepting Self

Desiring reconnection with life,
a longing for purposeful normalcy,
I push forward, intentionally ignoring
advice to the contrary.

Original intention well-meaning
(but not thought through)
minimal exertion is what’s called for,
but I feel inspired to do more.

Former strength now lost,
new awareness on the periphery,
hindered only by this cloudy head-
executive functioning currently disabled.

Bottom line is I must come clean,
stop overstating my capacity,
accept the unpredictable,
and recognize my limitations.

Embrace the lesson of constraints
and stop sabotaging the journey.
I am what I am, not a former definition
based on a life now redundant.

Naked, I fear that someone will see me –
I fear that they will not see me –
desire for acknowledgment,
a very human condition.

I need to ignore the obstacles,
wholeheartedly, without compromise,
reveal myself – no longer hidden.
I am, after all, what I am.