recovery

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.

health · Uncategorized

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.

health

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.

dreams · health

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.)

dreams

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.

health

Blessings

My mother’s feet scream with the agony
of her miserable condition,
underlying the disease that eats at her.
My feet, uncallused paddles,
slightly bent and fallen,
carry on with forgiving kindness.

My husband’s knees are red-hot pokers
shooting knife-sharp volts
with every rickety step he takes.
Mine like knots in the spindly
trunks that bear them
graciously allot me flexibility.

My father’s back grew weak with time
faltering in the end – unreliable –
as if he’d borne the weight of the world.
My back, not without its moaning,
carries me proudly, erect –
like the spring sapling, winter endured.

My 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.

My sister’s tension rises,
the stiffness in her neck suffocating,
headaches blinding her vision.
My neck, slung now like a rooster,
puffs around my face like an old friend,
allowing me the comfort of perspective.

My 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 the suffering of others;
my hands throbbed with a desire to help;
yet each bears their cross stoically,
and so I watch with compassion and gratitude
for a life I might have lived,
had my own vessel not been so blessed.

 

 

 

 

health

Day 264 “Do Not Wait”

“What does this say Mommy?”  A two-year-old peers intently at the letters on a page.
“They’re words, Honey.  You’ll have to wait until you go to school to learn to read.”

“When will I have a boyfriend?”  A pre-teen wonders aloud.
“Not until you’re older,” she’s told.  “Wait a few years yet.”

“I can’t wait until I move out!”  A young woman bemoans.
“Living under my parents’ roof is a drag.”

“Will I ever get married and have children?”  The working woman asks.
“I don’t know if I can wait much longer.”

“Wait ’til your father gets home!” A mother tells her naughty son.
“When will my time come to get out of the house?”

“We’d like to travel,” a woman tells her friend,
“but we’re waiting until the kids leave home.”

“I think we’d better downsize,”  a wife tells her husband.
“I don’t think we can wait until retirement.”

“Do not wait!” a widow tells her children.
“Or it may be too late.”

dreams · health

All The Little Pieces

You, old man –
silent onlooker,
career behind you,
motivation stymied
senility lurking –
You are a part of me.

You, grandmother –
chronic caregiver,
stiffly puttering,
good intentions,
punctuated by pain –
You are a part of me.

You, young woman –
heart full of passion,
longing to embrace life,
confined to a wheelchair
dependent independent –
You are a part of me.

You, little child –
running with emotion,
driven by discovery,
curiosity cancelling reason,
needing protection –
You are a part of me.

You, young man –
cold-hearted and reckless,
menacing and lawless
cruelly harrassing,
angrily destructive –
You are a part of me.

You, responsible one-
struggling to do it all,
holding it together,
rescuing the lot,
refusing to let go –
You are part of me.

You, my many pieces –
bound by disease,
beaten by hardship,
silenced by fear,
abandoned to rot –
You are a part of me.

I, shattered into pieces-
overwhelmed, and repulsed,
have not lost compassion,
will regain my fight,
hang on for salvation, because-
You are a part of me.

dreams

Damn you, Hindsight!

 

It’s my final year of high school, and while I should be focused on earning scholarships and preparing for University, I am head-over-heels in love. A year my junior, Bob is a dreamboat: quarterback on the football team, downhill racer during the winter season, and lead actor in the school play!

I rush to his locker after football practice, having wiled my time in the library with the pretense of studying. He is surprised to see me, asking why I didn’t go off with my friends after school.

“Because I wanted to be with you,” I purr flirtatiously, leaning in for a kiss. I hook my arm in his and lead him out to the parking lot, where the car I have been working to pay off, awaits.

It was all you, hindsight chirps in. He even said that that you should be with your friends. He tried to warn you, but you didn’t listen.

It’s a beautiful spring day and we drive out into the country just to enjoy it, and I wonder about our future, and if we’ll get married, and how soon I can have kids. He gazes out the window lost in thoughts that I cannot access.

“You should get a job,” I say. “ You know, to save for the future.” I’ve been working since I was fourteen. I enjoy the freedom having my own money brings.

“I have cash,” he responds and flashes me his killer smile.

From his parents! Hindsight yells at me. The boy still lives off his parents – How did you think he was marriage material?

I am seventeen, and full of romantic notions, and sure that I found “the one”.  He is handsome, and a good dancer, and plays the piano, and even held my head one day as I puked after drinking too much.  Isn’t that love?

After graduation, I move out, and find a full time waitressing job to pay the bills. University starts in the fall and I need to save. Bob gets a job and buys himself a sports car.

“He’s just a boy,” a co-worker tells me. “What do you see in that?”

It’s true that he wears racing gloves when he drives his car, and that seems a little foolish, but he’s my man, and I’m smitten, so I defend him.

And he spent every cent he ever made on that car and none on you, hindsight reminds me. You even forfeited a honeymoon so he could buy those racing tires! But you couldn’t see it!

Another year of our lives passes, and it is spring again, and I have just finished my first year of University and he is approaching his high school graduation and I ask him if he could ever see us married, and he says yes, and I ask if that means we are engaged, and he says sure, why not. And the plans are on!

Note how he didn’t even propose to you, hindsight interjects. Wasn’t that telling in itself?

I decide to let my education go, and he finds a job with a bank, dropping out of school just one month before earning his diploma. We work and save and make plans (well at least I do), and as the wedding day approaches, he gets fired.

“You don’t have to go through with this,” my Father tells me. “It’s not too late.”

“It’s not too late,” my mother assures me. “No one would think any different of you.”

I tell myself it’s just a bump in the road. We’ll get past this.

When my period doesn’t show up , my best friend asks him how he’ll deal with it.

“It’s her problem,” he replies, and walks out of the room, leaving me to break the awkward silence that ensues.

“You don’t have to do this,” she says.

But I do! My heart cries. You don’t understand! No one understands. He loves me. No one else will ever love me.

Oh boy, hindsight sighs. The writing was on the wall, and you couldn’t even see it.

Call it stubbornness. Call it willful blindness. Call it the stupidity of youth. I do marry him, and die inside every night as I climb into bed alone while he stays up with his guy friend watching movies until three or four in the morning. And I work two jobs, sixteen hours a day, while he sleeps till two and then moves from the bed to the couch where he channel surfs till I come home and make his dinner.

Even when you took in a boarder to help pay the rent, you just worked harder, never asking him to pick up the slack, hindsight reminds me.

“You are going to burn out,” the friend I had ignored for him tells me months into the marriage. “I just worry about you.”

“He just needs to find himself,” his mother tells me. “He doesn’t want to take just any job, he needs a career.”

So I seethe inside as I go from day job to night job, and pay the bills, and do the laundry and shop for food, and clean up after his posse of unemployed friends.

None of it should have been a surprise to you, hindsight accuses. It was your own desperation and lack of discernment that drove you there.

“He prefers male company to you,” my mother points out. “Doesn’t that suggest something to you?”

It isn’t that I haven’t notices, and when I ask, he says that it’s just that I am not sexy. He’s tried, he says, but I just don’t do it for him. It’s my fault, I think.  I am disgusted with myself. I start working out, but am too tired. I can’t keep up the pace.

It’s not till I discover his private bank account where he’s been hoarding money that I realize that the price for his dream is just too much, and two weeks before our second wedding anniversary, I kick him out.

“Get help.” I tell him. “Find out who you are and what you want from life.”

He moves in with another woman.

And I, broken, bruised and ashamed, push on.

Thirty-seven years ago today, I was about to be married, and despite all the counsel to not go through with it, and all the evidence that this was perhaps not the best decision – I did it anyway.

Damn you hindsight, for never being there when I need you.

health

Day 261 Birth

It’s been almost a year since I received the diagnosis of ME/CFS; two years since the visits to the emergency room escalated and I knew something was very wrong; four years since I suspected my system wasn’t working right.  Step by step along the way I have died in little pieces:  watching my dreams (some shared, some personal) slip away.

While waiting for the results of Thor’s biopsy we made out a bucket list:  places we wanted to travel, activities to pursue, risks to take – all requiring energy – all beyond my capabilities right now.

I am told that people recover from this disease – thirty percent completely – and others learn to adapt to the eventual return of some functioning – and so I keep hoping.

I am not one to believe that life is a haphazard set of events and then we die.  I believe that there is purpose and opportunity around every corner and that the trials we are given are invitations to delve deeper into the mysteries of the universe and the wonders within.

With this mindset, I await the first dawning of new light:  the birth of something new.

Every day I am letting go and surrendering -accepting – this process with an open heart and mind, anxious for the labour pains to begin.

Life remains pregnant with possibilities.