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Sunday, August 31, 2014

The Play's the Thing

A steady slow soaking rain to start the Sunday, the summer slipping away again.  The tops of the trees are showing more yellows and browns than a week ago and the over-night lows are back in the 'almost need a light jacket' range.  Students heading back to school next week and though the calendar insists we still have another 3 weeks, it seems like Fall is ready to return to her throne to ease us back into the comforts and certainty of our routines and schedules.

We took advantage of the city's cultural offerings these last couple weeks, theatre to be exact, first catching a stunning performance of Wicked, as the latest North American tour set up shop in town for almost 2 weeks at the Centennial Concert Hall.  Then last  Wednesday we enjoyed a local production of Disney's the Little Mermaid at the semi-outdoor Rainbow Stage in Kildonan Park.  A contrast of audiences and show types to be sure, but both shows reminded us of the depth and variety of talents our fellow humans possess, and of the power of story telling to entertain and distract, and why the arts are important.



Transporting audiences to another conscious level through acting, song and accompanied orchestral score is no small feat.  The talents and skills of hundreds of people are needed to successfully produce a 2 plus hour show flawlessly night after night, performance after performance, teamwork of the highest order that culminates in a seamless journey into the fantasy world created on stage. Behind the costumes and make up, ordinary people delve deep to find the passion and the poise to become something or someone other than who they normally are, slipping into and out of characters to delight and amaze, to tell stories and to entertain audiences familiar with their roles.

We get lost in their performances, and accept the absurd and the fantastical without question, delighting in the dialogue, the humour and the banter. Transfixed, we watch in awe as soaring voices and mastered instruments become one in song; solo and ensemble furthering the storyline in grand, and at times unbelievable, fashion.  Until, at the show's finale, we stand and applaud their efforts, selflessly giving our approval and acceptance and heartfelt gratitude for their hard work and determined effort, and then we return to the familiar and routine, enriched by the experience and moved on levels we weren't expecting.
The theatre. A grand art form of shared experience.

Sandwiched between the two shows last week, we learned of my aunt's passing after suffering a massive heart attack, likely linked to the stroke she had suffered 2 weeks earlier at home, where she and her husband were valiantly dealing with her progressively worsening condition.  Like my mom, my aunt had inherited one of the genetic mutations recently discovered to be somehow responsible for ALS, and in this mutation's case, with or without Fronto-temporal Dementia, and or with or without Parkinsonian symptoms.

My aunt battled breast cancer before the signs and symptoms of Parkinson's appeared, and then the dementia slowly crept in too... The timing of her passing in the midst of this summer's ALS Ice Bucket Challenge campaign is notable, especially in our family where the disease(s) are now known to exist.

We attended her funeral last Thursday and in the soaring spaces of the church's sanctuary we listened as her children shared their stories and recollections of her life, working through their loss to find meaning and purpose in their mother's time here with them.  Friends and colleagues shared stories of their times together, of her many years touching lives if children as an early years educator, front and center in the development of future character.  Through song and scripture we sat and contemplated her life and our remembrances of her, of them, of family.

The formality of service makes for quiet contemplation, and as I sat and listened to the outpouring of emotion and the sharing of lessons learned and the ways in which she had affected those around her, I was struck by how different the person being portrayed at the front of the church seemed from the person I had known personally, my interactions and memories influenced and affected by my experiences no doubt, and also I'm sure, by the distance both physical in terms of growing up in different cities, but also spiritually as well - my aunt and uncle having "found Jesus Christ in 1963" as we would be reminded on numerous occasions during the funeral and afterward as we enjoyed refreshments and mingled communally in the church gymnasium...

Whatever you need to help you deal with this reality, I guess.  If it works for you and brings you peace and happiness? Go for it.  

Of course no funeral has ever truly allowed those in the pews to fully realize the nature and true character of the dearly departed. We gloss over the less than pretty warts and scars to which all lives are prone, and we focus instead on the virtues and traits that elevate our final memories of our loved one and serve to give us comfort and closure; meaning and sense from the pain and sorrow.  A life reduced to summary, edited for detail and milestones, punctuated with personal insight and anecdote. Music and song and verses and scripture to tell the story of a life well lived.  An audience solemnly seated in the wooden rows, listening to shared private experiences.

Shakespeare was correct:

"All the world's a stage,
And all the men and women merely players.
They have their exits and their entrances..."
As You Like It, Act II Scene VII


The theatre.  A funeral. The arts.  Costumes and characters and make up and elaborate sets. Scores and scripts and scenery. Song and dance and storey lines; Joy and sorrow, drama and comedy.  This play has it all.  Let's see what talents we possess.  Show them what you can do. You don't have all day though, get out of the audience and up on stage before the curtain falls.  There won't be an encore...


Thursday, August 7, 2014

I just won the lottery!

Some days change your life in ways you never fully expect or understand until some time has passed and things can be seen with greater clarity.  The day I had my table saw accident and subsequently had a good portion of my middle finger removed by the plastic surgeon is one of those days.  You learn things about yourself and how you view the world and your place in it at times like that.  At least I know I did.  Other days you life changes instantly and you know it right then and there.  No need to wait and ponder the events, no deeper understanding needs to be developed.

Today was one of those days. I won the lottery this morning.



I know, it doesn’t sound real.  Trust me.  I had to pinch myself to make sure I heard the news correctly at first too.  Oh wait – no – not THAT lottery – don’t come asking for money or camping out on our front step pretending to be related to us – and for those of you who are related to us – yeah, even if it were THAT lottery you’d still be SOL.  No I’m talking about a bigger lottery and one that many people would gladly pay enormous sums to win if they could have the opportunity to do things over.

Many of you will know that last year we lost my mom to ALS and FTD – a combination of motor neuron disease that steals away muscle’s ability to grow and thrive until eventually you are left in some state of paralysis and certain respiratory failure, and also a nasty form of brain atrophy that affects an individual’s cognitive and decision making abilities depending on areas affected, robbing them of their former character and personality.  It is a brutal spectrum-type disorder that can also manifest Parkisonian symptoms as well.

What many of you didn’t know is that her condition was inherited and she received mutated genetic material from her father who suffered a similar fate years earlier.  In this genetic mutation’s case, the traits are passed down in an autosomal dominant fashion, meaning that children of an afflicted individual will have a 50/50 chance of having that same affliction.  

This particular genetic mutation is rare.  And from all research to date having the mutation means one will develop the disease spectrum at some point in their lifetime.  No cure.  No known treatment or drugs to help alleviate symptoms.  No idea when it will begin to strike, or in what capacity.  And if you have it, you are at risk of passing it on to your children.

So for me (and my brothers and sister) I either got mom’s corrupted gene, or I got dad’s, which by all accounts and anecdotal family medical history should be clean. 

A 50/50 chance.

A flip of life’s coin.

Not just for me, but also for my son potentially.

It’s been news that I have sat with, lived with, thought about and pondered for a year and a half since we got the news about mom’s positive test results months before she passed away.

I apologize for not being as present during that period of time as maybe I should have been or could have been.  You’ll forgive me if I seemed distracted or distant or if maybe my behavior seemed ‘different’ or ‘odd.’  I didn’t mean to be.  I was dealing with a decision that needed careful thought and deliberate intention.

Genetic testing was offered to all at-risk family members.  I was an early proponent for being tested, as soon as I knew I was at risk, I wanted to know what I might be dealing with.  Not everyone in my family shared my desire for knowledge, and I respect that.  We each have our own road to travel in this lifetime.  What is right for me may not be right for anyone else.

I get that totally, and completely respect the decision not to get tested.  It is a difficult choice for many to try and make.  It isn’t easy navigating the possible outcomes or ramifications of the disease and it’s effect on those around you, on your lifestyle, on your career…

But for me, I HAD to know. I need information in order to make decisions – I trust my intuition only so far – and I can’t plan if I don’t have all the facts.  So after ensuring I knew as much as I possibly could about the science and the disease pathology and similar genetic testing methodologies and in consultation with the Medical Director of Genetics and Metabolism at our largest hospital, I chose to get tested this past spring.

I got my results this morning in person.  Karen and I waiting as the doctor opened the sealed envelope and read the results to himself before turning to us.

“Congratulations! You just won the lottery.”

I am not at risk.  I am not a carrier of the mutated section of genetics.  I did not pass this disease along to Riley…


For the past few months I have been moving forward in life with a gut level sense of the results coming back positive.  Not in an anxious, worrying about the results kind of way, but I think as a means of preparing myself for the possibility of what I might have heard this morning if I had lost the coin toss.  A way of dealing with the possible eventuality should it come to pass.  A way of sorting out the issues for myself and providing a sense of understanding what it all means in the grandest scheme possible.

It was not a waste of my time or my energy to do so.  In fact, it was what I absolutely needed to do to be prepared to face the news one way or the other.  And now I know.


I won the lottery today.  The bank account doesn’t look any different than it did yesterday, but the future looks considerably brighter, and I am far more richer than I was.