Giving a Voice to the Pain – Introduction (September 2016)

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These blog entries provide recollections from 20 years of living with chronic pain and many more years of living with PTSD.

I began writing last year in an attempt to give a voice to the chronic pain and to the trauma of PTSD. The writing started as a creative project during a “Mindfulness For Pain Management” course in which we were asked to express our pain either through a picture or through the written word. I chose to write.

I selected one hour out of my 20 years in chronic pain and attempted to convey, in words, what it really means to live in pain, day by day, hour by hour, month by month, year by year.

I shared my writing with my classmates and discovered that the writing and the sharing was therapeutic – for me and for them. It provided a voice that said what they all wanted to say but couldn’t find the words to say it.

I decided that I would continue to write and continue to share with any and all of you who are suffering from chronic pain, or PTSD, and who are trying to find a way to voice it.

The writings are primarily stream of consciousness, during which I place myself back in time and into those moments that are representative of my life. They are voiced in a way that bares the heart and soul, leaving one vulnerable. They are meant to be read in the same voice.

Although not cheerful subjects, there will be moments to uplift.  After all, 20 years in pain, and many more years living with PTSD, and I am still here and life still has value.

Regarding the PTSD, I live, now, with greatly reduced symptoms thanks, in large part, to about four years of psychotherapy and courses on anxiety and depression and mindfulness.  There is, overall, less anxiety and depression and there are much fewer, and less severe, panic attacks.

Regarding the chronic pain, in many ways I am doing so much better, but there is still pain every day and it is spreading throughout my body.

I look forward to sharing how much a life can improve when one seeks, and is lucky enough to find, the help needed.

Thank you for visiting with me today. Share your thoughts if you wish.  And come back again any time. I’d love to share my journey with you.

I am My Body, My Body is Me

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I Am My Body,
My Body is Me

Perthmore, March 19, 2017

So often,
Too often,
A line is drawn.

The body
On one side.

The mind,
The emotions,
The psyche,
The soul,
On the other.

Illness comes.

For me:
Chronic pain.

For others,
An endless list:
Physical,
Mental,
Emotional,
Spiritual,
Illness…
And pain.

Battle lines
Are drawn.

The body cries out:
Why,
Oh why,
Have you done this
To me?

The mind cries back:
But it is you,
It is you
Who have done it
To me.

It becomes a fight.
The mind fighting
The body.
The body the mind.

Waging war,
Doing battle,

Day in,
Day out.

Night,
After very long night.

And we forget.

We forget
That mind and body
Are one.

There is no divide.

What happens
In the mind,
So happens
In the body.

What happens
In the body,
So happens
In the mind.

The only betrayal,
Perhaps,
Is that
Betrayal
Of ourselves
To ourselves.

Not a betrayal
Of mind on body,
Or body on mind.

But the betrayal
When we forget
To listen
To the body,
Its whispers,
And its screams.

Illness comes,
Perhaps even slightly benign,
At first.
We push through.
We dominate.
Relentless
And unforgiving.

We forget to listen.
We forget to care.
For this,
Our body,
The only body
We have.

We wear it down.
We wear it out.

The pain persists.
We still push on.

The pain worsens
We still push on.

The pain dominates.
We still push on.

Then the lamentation:
Mind to Body:
Why,
Oh why,
Have you done this
To me?

If only
We had listened,
Listened:
To those Whispers.
Listened:
To the whispers become screams.

If only,
We had cared for
That body.

The body
That houses
The mind,
The soul,
The essence
Of the being
That we are
And without which
We cannot exist
On this earth.

If only,
We had:
Walked together,
Mind and body,
Body and mind,
Through this wilderness
Of life.
Through its beauty,
And its darkness.
To come out,
Together,
At the end,
As one:
One body,
Mind,
Soul,
And psyche.

So,
For those who engage
Daily,
Nightly,
In this fight,
In this battle,
Step back.

Step back,
From that line.

Look into body,
And soul.

Look deeply,
And remember,
To care
For your own self,
For your own body,
Mind, psyche, and soul,
With all the love,
All the compassion,
All the tenderness,
That you hold
In your hearts,
And minds,
For others.

For the children,
The poor,
The downtrodden,
The suffering,
All the vulnerable creatures,
Large,
And small.

Care for your own child,
Your own vulnerable child within,
As you would
For the vulnerable child without.

Who else will care
If you don’t?

Who else is there
Who can listen to,
Who can hear,
The whispers?

Who else is there
Who can listen to,
Who can hear,
The screams?

A Blink and A Snap

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A Blink and a Snap
Perthmore, February 2017

A blink of the eye,
A season gone by.
A snap of the finger,
Another.

A blink and a snap,
A snap and a blink,
A year we cannot
Recover.

We live in the past.
We ponder and brood
How different
Our lives could have been.
Rehashing,
Reworking,
Refitting,
Remorsing.
Regretting the things
That we did.

We live for tomorrow.
We vision and plan
All the things
We have yet to do.
We live there
In dreamland,
Oh bright coloured lights,
Oh fantasy,
Sparkling,
And new.

But the Past
Is the Past.
It’s no longer,
It’s gone,
Cannot be retouched
Or reclaimed.

The future-
Well it
Simply does not exist.
It is always
A moment away.

There is only
One thing
We can touch,
And can feel.
We can see,
We can breathe,
We can be in.

The here
And the now
Learn to seize it
Dear friend
For it’s all,
In truth,
That there is.

A Farewell to Psychotherapy

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A Farewell to Psychotherapy
Perthmore 2017

On my own again.
Better armed,
It’s true,
Than I ever was before.

Thought I’d be the one
To decide
On the coming,
And the going.

Didn’t take advantage
Quite as much
As I should have.
Too late now.
Find another way.
Or, maybe,
Do it on my own.

I did it on my own,
Before.
I can do it on my own,
Again.
Better armed
Than I ever was before.

Still a lot
I can’t get down to,
Deep in the soul
Of regrets,
And hopes,
And fears.

There is,
After all,
Only so naked
One can get,
Baring the heart
The soul,
The mind,
The inner self,
The fearful self,
The anxious self,
The shameful self.

Too hard to go there
All the way,
In the light of day,
Or even
In the dark of night.

Things one
Doesn’t want to own.
Bring them
To the grave
Let them drift away
In the dust,
And in the dirt.

From the prison
Of the soul,
Let them drift away.
Or carry them,
Forever,
In the darkness,
In the ever after
Darkness,
Of the soul.

Glad to be Alive

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Glad to be Alive
Perthmore, February 2016

I am here,
Now,
In this moment.

Walking,
With my dog.
On this
Most beautiful
Of days.

A hint
Of sunshine
To warm me.
Cool breeze
Upon my cheeks.
Only occasional stops,
Today,
For the pain.

And I am glad,
So very glad,
To be alive.

And on we walk.
The pain deepens.
I lose my focus,
My connection.
And I stop.

I stop.
I rest.
I remember,
For a moment,
That I am glad,
So glad,
To be alive.

Even as I fight,
Through the pain.
Push,
Through the pain.
Distracted,
By the pain.
Focus gone.
Even then,
I still walk on.

And I remind myself
To try,
To at least try
To remember,
To try,
To at least try
To be glad,
To be alive.

On My Watch

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On My Watch
Perthmore, September 2013

Dad is settled now,
For the night.
At least
I think he is.

I am downstairs
In the guest suite.
Dad is upstairs
in mine.

Cried his heart out,
Again,
As I tucked him in.
Those who know,
Know why.

Had our evening chat,
My pleadings that he use
The emergency button
If he needs me
During the night,
And, which,
Of course,
He never does
(i.e., use the
emergency button).

Left him with his music.
He likes it very loud.

I sit in the TV room,
Next door,
Wanting to be certain
He is settled,
Asleep,
Before I retire
To the basement.

Feeling guilty.
Didn’t turn the TV room
Into a bedroom,
Which I should have done.
I should be next door
So that I can hear him
In the night.

After all,
There is an incident
Almost every night.
And he lives
With the consequences
Until morning.

Could be urine,
On the floor.
Could be wet pyjamas,
Or wet slippers.
Could be broken class,
And water everywhere,
A slippery floor.
Could be anything.
And, Heaven forbid
That he fall
When he is alone,
There,
In the night,
When I might not hear.

For sure,
I awaken often,
Make the trek,
Up the stairs,
Down the hall,
Listen at the door,
Make certain
I hear
The regular breathing,
The snores.

Doesn’t mean
There Isn’t a mess.
But if he is asleep
It can all wait
Until the morning,
A new day,
When,
Hopefully,
I will have
Less pain
And new energy.

Lying in bed now.
Ears tuned to upstairs.
Back burning,
So badly.
Back aching,
So badly.

My whole body,
My whole being,
Exhausted
With the strains
Of the day
And the pain,
So unrelenting,
And so pervasive
With this new life,
This care giving life.

Hoping
Beyond hope
That the pain,
And chronic fatigue,
Will settle back,
To “normal”,
As we get into
New routines,
His,
And mine.
As we settle
The legal stuff.
As he comes to deal
With his new
Reality,
And I come to deal
With mine.

Family is there,
Of course,
Helping out,
In so many ways.
And I will forever
Be grateful.

Dad is becoming accustomed,
I think
To having a daughter,
Or daughters,
To tuck him in
At night.
Making sure he knows
He is loved,
And wanted,
And not a burden.

Wish I could have
Had him longer.
All too quickly
He was gone.
We didn’t even get
A chance
To settle into
All those new routines.

He didn’t get
The chance
To really
Appreciate
The way his new life
Could have been.

I didn’t get a chance
To make a whole lot
Of difference.

But it ended quickly,
Weeks only,
And he was gone.

I will always be glad
That I had the chance
To have him here,
With me,
For a while.

I will always wish
I had done better.

And I will always feel,
To some extent,
The guilt that he died
On my watch
Which was,
Of course,
Inevitable
From that moment
When his furniture
Came through my door,
And Dad too,
Watching
While his things
Were organized,
His pictures hung,
His computer made to work.

Dad,
Realizing only now,
I think,
That this was
For the long haul.
Not just a short stay
‘Til his wife
Felt better
And wanted him home,
Which we all knew,
And he could not accept,
Was never
Going to happen.

But the long haul
Was really
A short haul.

Then he was gone,
A very bad fall,
On my watch,
Hospitalization,
The dying process,
The long leaving.

And we are all
Left here
Missing him.

Two parents gone now.
The cord to the past is cut.
The family goes on.
Indeed it grows.

And we keep with us
Their legacy,
A great legacy,
A lasting legacy,
A forever,
For as long as we
Shall live,
Legacy.
A legacy
For the generations.

 

And the World Was Mine!

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(Adapted from my Scotland Diary)

And the World Was Mine
Conqeuring Ben Rinnes, October 4, 2010

See the video by clicking on the link below:
https://www.youtube.com/watch?v=CA_RBSEU3w4

Sister Patricia’s birthday today!
She’s 59 years young.
Which makes me 63.

We start the day celebrating,
Quick breakfast,
Boiled eggs and toast.
Brother Chris,
And his wife Eileen,
Have prepared a packed lunch.

Excitement is in the air.
We are preparing to undertake
An awesome challenge,
Something to celebrate
This very special day.

We’ve eaten breakfast.
Everything is packed.
Anticipation is growing.

We pile in the car.
We drive to Ben Rinnes.

A Corbet-level mountain,
2,800 feet.

(Side note:
A dozen people are killed on the Scottish mountains
Every single year,
Thankfully not yet on Ben Rinnes,
Twice thankfully,
We didn’t add to the toll today.)

Walking it in zigzag fashion
Across the mountain,
Some of it straight up,
About 20,000 steps in all,
We figure,
With the Up and
With the down.

Can we do it?
Can we make it to the top,
To the pinnacle?

Everyone hopes.
Everyone dreams.
But we all secretly question:
Can I do it?
Or will I
Be the one left behind,
While the others
Finish the climb?

Each with our secret fears.
Each with our secret doubts.
Each with our secret hopes.

We start out
In beautiful sunshine,
A bright,
Cool,
But clear day.
White clouds,
A nice breeze,
Lots of layers of clothes,
Sunglasses,
Hats,
Walking sticks,
Gloves,
Cameras,
Backpacks,
Food,
Water,
Cool drinks,
And, of course,
That inevitable,
That Life Saving,
That always present,
Shared,
Flask of Scotch!

And so,
We take it in stages.
Sometimes,
In the steepest parts,
We do less than fifty yards
Before resting.

There is occasional relief
As we come to a flat stretch.
It never lasts for long.

We look back.
We cannot see our start point.
We look up.
We cannot see our end point.
We cannot see
The Bottom
Or the top
Of Ben Rinnes.

We are almost
Alone in the world.
We see only 4 people,
And 2 dogs,
During the course
Of our climb
And our descent.

So exciting:
We receive a wing-tip salute
From the Royal Scottish Air Force.
We wave down to them
On their fly-bys
Through the valleys.
We could almost hike a ride,
They come so close,
Just a big step down,
It seems,
And we could climb aboard.

The slow pace
Of the climb
Is for me,
Of course.
The others
Could do it
So much more quickly
Left on their own.

But, for me,
Though I never speak it,
Each step up is painful,
Pain in my back,
Pain in my hips,
Pain emanating down my legs.

The rest stops are essential
If I am to make it
To the top.

And I so much
Want to make it
To the top.

And I do.
Thanks to the patience
Of the others,
We all make it!

We all make it
To the very top,
The highest pinnacle
Of Ben Rinnes!

As we have been climbing:
Cameras flashing,
Laughing,
Shouting, with joy,
The odd sip
From our little flask.
And for me, at least,
The pain of the climb,
The pain
That I know so well.

Legs aching,
Feet aching,
Knees aching,
Back aching.
That bearable, unbearable, pain.

I was never sure
That I could make it.
But I did.
We all did.

We conquered the mountain.
We reached the pinnacle –
With Patricia in the lead,
Chris, Eileen and Cathy
Very close behind.
Wendy bringing up
The very far rear.

We look to the North.
We look to the South.
We look to the West.
We look to the East.

We can see
To the horizon
In every direction:

Hill after hill,
Layer after layer,
Peak after peak.

In the distance,
The heather blowing.
White clouds.
Blue sky.
Scottish Highland
At its highest
And its best.

Greens, every shade.
Grays, sometimes verging on black.
Golds.
Browns.
Some purple, still,
In the heather.
It is breath taking.
It is beautiful,
More than
We ever imagined,
As we looked
To the beyond,
As we looked
To the forever.

What else can I share?
Ah, perhaps to tell you
Of the biggest challenge
Of the climb
(Barring the pain of course):

The wind!

As we climbed
This very open,
This beautiful,
This heather-covered mountain,
The wind has been rising.

By the time
We reach the top,
We are on hands
And knees
Battling the wind.

Gale force winds.

We can fall into the wind
And it will hold us in place.

It is battering us,
Bending us over double.

We can barely take
Our absolute-must-take photos.

We can barely manage
The packed lunch
And our shouted rendition
of Happy Birthday
For Patricia.

We have every layer of clothes on.
It is getting colder.
We fight the last part of the climb
With all of our strength,
Struggling to get over the pinnacle,
Struggling to stand
And exult in our achievement.

But it is not over.
The descent
Is now made more challenging,
Even dangerous,
By winds
That continue to batter us
As we fight our way through them.

But on we battle.
We laugh,
And shout,
And scream,
And revel,
In the moment,
Exhilarated to the core.

Six hours after starting our climb
We are relaxing
At The Highlander Inn.

We are toasting
With our Brews
And our Ciders.

We are tired.
We are happy.

And I celebrate
That moment –
The moment
When I conquered
Ben Rinnes.

The moment
When I conquered Ben Rinnes.

And the World Was Mine!

A Lifetime of Grateful

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A Lifetime of Grateful
Stittsville, 2009

I could count
Those moments
On the fingers
Of my two hands.

Those rare,
And beautiful,
Moments
When a realization
Settles,
Suddenly,
Upon me.

Standing,
Perhaps,
At the kitchen counter,
Or sitting,
Perhaps,
Colouring,
Or reading.

I stop,
As it descends
Like a rare,
And precious,
Gift:
A moment,
Of complete,
And total,
Absence
Of Pain.

This simply
Doesn’t happen.
It hasn’t
For, oh,
So many
Years.

Sure,
There are times,
When the count
Is low.
I might give it
A 4 out of 10,
A 5 out of 10.
But this,
This is different.
It does not
Even register.

It is an absence,
Pure,
And simple,
An absence
Of pain.

Meds, perhaps,
Kicking in?
They don’t,
For the most part,
Help much,
Other, perhaps,
Than to take
An edge off
Now and then.

But this sweet,
Momentary,
Blissful,
Absence.
This complete
And total
Absence,
Of pain,
Settles on me,
And I shudder
With the ecstasy
Of it,
While everything else
Is in suspension,
Even my breath.

And,
For this moment,
This
Oh so sweet
Moment,
I am grateful.
Deeply,
Blissfully,
Grateful.

A lifetime
Of Grateful
In a Moment.

This Unendurable Pain

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This Unendurable Pain
En Route from Gatineau, Que., to Stittsville, ON, 2008

5:45 p.m.,
And I’m almost home,
After another long day
Of battling pain,
Minute by minute,
Hour by hour.
And somehow
Here I am again,
At the end of my work day,
In the car,
Almost home.
And the pain goes on.

I wonder,
As I often do,
How can I go on?
Really,
How can I go on?
How can I manage
One more minute?
Much less one more hour?
Much less one more day?
One more week?
One more month?
One more year?

I’m home now.
Snuggles has been fed.
I’m standing at the kitchen counter
Chopping vegetables for a salad,
After injecting myself
With magnesium
And B12.

If I can just stand here a little longer,
Just a few more minutes,
Long enough
To finish the salad,
To make a cup of tea,
To collapse onto the love seat
With my supper,
My ice packs,
My morphine.

The morphine that barely touches the pain,
Barely, barely makes a dent in it,
Barely gets me through the evening,
As I struggle to go on,
Moment by moment,
Hour by hour,
Week by week,
Month by month,
Year by year,
Bearing this unbearable pain!

I wonder,
Again,
And yet again,
How a human being can go on,
Looking normal,
Acting normal,
To all appearances
A normal human being.
All the while
Just enduring.

Just enduring,
Minute by minute,
Hour by hour,
This lonely,
This unendurable,
This unbearable,
Pain,
That somehow must be made bearable.
Because what other choice is there?
But to go on,
To never give in.
To never give up.

Although,
If I knew
What giving in meant,
What giving up meant,
What it looked like,
In real terms,
Then I might do it!
But I don’t,
And so I go on
Bearing this unbearable pain,
Its loneliness,
Its despair,
Its unrelentingly,
Cruel relentlessness.

And I ask why,
But will never know why,
I must endure,
Seemingly endlessly endure,
Hopelessly endure,
This unendurable pain.

To Maybe Wake, To Maybe Not

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To Maybe Wake, To Maybe Not
The  Parkway near my  Condominium, 2003

Stumbling,
Tripping,
Over
My own feet.

Eyes closing,
Closing,
Closing.
So hard
To keep them
From closing.

Barely aware
Of my
Surroundings.
Trying so hard
To focus
On taking one step
After another,
Just one more step,
And then another.

Overdose, I think.
So much pain this morning.
Slapped my Fentanyl Patch
Right over my spine.
Didn’t help much
On my shoulder.
So maybe, I thought,
It might do more
On my spine.

That’s if I thought
At all,
Of course.

Sometimes in a daze
Of pain and drugs,
I hardly knew
What I was doing.

But I did know,
With practical certainty,
That if I lay down to rest
On that particular day,
If I dared to give in,
For even a moment,
Then I might not get up again,
Not on that day,
Nor ever again.

Barely remember
That morning.

Barely remember
That whole day.

Just remember
Those moments,
By the river,
Trying so hard
To focus.

To focus
On putting
One foot
In front
Of the other.

Barely conscious.
Eyes closed.
Stumbling
In my waking sleep.

I wonder sometimes
Why I didn’t just give in.
Could have rested
On my bed,
Or on the grass,
In the sun,
And maybe slept
The long sleep.
The restful sleep.
The pain-free sleep.
The forever
And ever
Sleep.

That day,
It would have been so easy.
To stop.
To lie down.
To sleep.
To maybe wake.
To maybe not.