Uncertainty

Sudden Cardiac Arrest (SCA) leaves its survivors a bit shell shocked at first.  So few of us survive and even fewer with intact hearts and brains.   Many of us had no diagnosis before that day, and many will never learn the root cause of our sudden electrical disruption.  We didn't have heart attacks; this was not plumbing; this is not the build up of cholesterol or inflammation in our arteries ---- this is Sudden Cardiac Arrest - this is a heart that simply stops beating.   Most of us had a heart that was deemed "healthy" right up until it stopped beating.

What we all had was an electrical outage.  We definitely all had that.  Bu they can't tell us much.  Often they can't tell us why; they can't tell us the probability of its happening again; they won't give us odds.  Maybe it will stop again, maybe it won't.  Instead, they give many of us defibrillators in our chests.  Because unlike the electrical outage in your house, the one in your heart doesn't just "come back on again" in a few minutes.  And no, CPR won't restart an electrically stopped heart - it just buys a little time.

None of us had warning; we wake up after our SCA and someone tells us our new story.  Electrical outage, heart stopped, we know nothing.  Sorry.   It's a long list of adjustments.  Many have heart or brain damage to contend with.  Most are not permitted to drive, at least for a few months.  We are told not to scuba dive, no MRI's - ever.  Airport security poses some new issues.  We worry about what is safe and what suddenly is unsafe.  Some get implanted defibrillators.  Probably all of us get some medication to take - although in my heart of hearts, I think they're pretty much guessing with that too.  Just in case.   So we struggle to adjust.  We fend off fear on top of fear.  We slowly adapt.
We are scared, we're grateful, we know we are exceptionally lucky and unlucky at the same time.

Mostly, I think what we are is stunned.   This softens over time, but it doesn't go away - this is stunning, this naked fact that our hearts simply up and stopped.   There are some things in life that are meant to be certainties - the sun will rise tomorrow and set tonight.  The sky is blue, clouds are white.  Puppies and children are cute.  Homemade pies and plums are wonderful.  The ocean will take my breath away every single time I see it.  Dolphin and deer raise one's spirits.   Libraries and hardware stores are just the most wonderful places.  A good baseball game is magnificent, particularly one that starts in the late day and ends under the lights.  The Cubs will never ever win the World Series again.    And healthy hearts will continue to beat.  Certainties.

Just like sunrises and dolphin - you should never have to think about whether a 'healthy' heart will keep beating. Of course it will.  We SCA survivors know it's no longer true.  We find one another on the web and we grapple with uncertainty and fear and the joy of our exceptionally good luck.

But each of us knows,  every single day -  that something in there went off the rails.  Our hearts are not normal.  We may still not have a diagnosis, we may still be told our hearts are otherwise 'healthy', but we know ----these hearts are not normal.  They simply stop.  They are not sure things.

So Chicago, take heart - the Cubs may win again one day.

People We Count On

I miss my uncle.  I miss him often, but particularly on days like this one when I am unsettled, anxious, tense, worried.   For many years, he was my person.  Sometimes I feel guilty that I miss him so much more than I miss either parent, but to be honest, it's not even close.   Bill was my friend, my mentor, my hero, my godfather and my confidante.   I adored him; I loved his company; we made one another laugh --  and I sought his counsel.  I miss him.

Today, I'm better, but yesterday I was rattled, anxious, disturbed.  After a serene 2 1/2 years, after reaching a time when I so rarely thought about him,  my ex-husband (T) zipped back into my life.   After an on-and-off 28 years, his departure and the arrival of my Sudden Cardiac Arrest (SCA) were nearly simultaneous.  So sometimes I may  have trouble sorting out what parts of my new life are due to SCA and Skippy the implanted defibrillator, and what parts are attributable to the post-T life.   Either way, I love this life of mine.  I live where and how I want to live, anxiety pops up only now and then.  For most of my T years, anxiety was nearly constant.  What a state of affairs that the anxiety of an alcoholic ex-husband is more difficult to manage than that of a heart that has taken to stopping, and a defibrillator in my chest wall that may shock the crap out of me one day.  It made me laugh out loud when I realized that.  My happy but so-called life.  

But much less fun was yesterday and the day before - the day the ex zips back in with harsh legal news and facts and worries - this is when I almost literally reach for the phone to call Bill.  It took me over a day to sort out what my reaction and response would be, what I was comfortable doing and what I would not do.  It's difficult to detach totally when the ex's need is this acute and the stakes are this high.  This was my husband; this was 28 years.  It's hard.  I needed Bill.

In the end, I decided I could make one phone call to T.  I could make other calls to some family and former friends.  I called a former sponsor.  I encouraged each of them to call T.  My one phone call to T was to blow out his secret - to tell him everyone knew this current story and to ask that he at least think about taking the call from the wonderful former sponsor.   And to wish him the best.
Predictably, T then called me multiple times, but I have finally learned my lessons. I respect my own boundaries.  I understand my limits.  I wish him well and hope he finds his way.  I did what I can do.  It's as far as I go.  Those lines don't have cracks in them anymore.

Bill would ask if my life were now joyous, free and surrounded by people whom I enjoy and who care about me - yes, yes and then again yes.  Bill would remind me softly that trading in my today life for any part of this past would be a monstrously poor choice - that I have seen that movie and I know how it ends.

So I miss my uncle, but he's here, here in my very sensibility.  I feel like I took my time, sorted out my options, made my choices - and turned to look over my shoulder to see Bill nodding his gentle assent.  Years after his death, I still count on him.  And I remain so grateful for him.

Hearts, Neckties and Ferris Wheels

Who wears a necktie on a Ferris Wheel?  Long ago Dads did.  I saw a photo of a Dad and two sons, probably from the early 60's.  Probably before Kennedy was killed.  It was black and white - the photo.  And the copy was faded and stylized, so detail was lost.  But it was a Dad and two sons. They were on a Ferris Wheel. And the Dad wore a necktie.

Was it the end of a workday?  Or maybe Sunday after church?  Men still wore ties to church back then, I think.  This dad has that look - he was a business man or owner of a certain type of shop or a professional - a lawyer, accountant, doctor.  He was not a stranger to neckties.  Even in this old photo, you could tell he was comfortable in his tie.  He might have been uncomfortable without it.

His two sons flanked him.  The younger probably 5, the older maybe 8.  The older one doesn't want to be there. Probably doesn't want to be hanging around with buttoned-down Dad and surely not with the little brat brother.  This older one - you can't see the eyes rolling, but you just know they are.  He's bored, the Ferris Wheel is probably small, he wants to get it over with.

The Dad is there, but he's not having much fun, he's not engaged with either boy.  His eyes are off in the distance - some high altitude distance.  He's got the young one on his lap, but he's not really even holding onto him.  There is not a seat-belt or restraint in sight, but this boy is more perched than cradled on his dad's knee.  Not like today's Dads.  This Dad is fulfilling his obligation to take the two boys on this dumb amusement park ride.  He is, after all, a man who wears neckties to a fair.  The Ferris Wheel was no doubt foisted upon him by his wife, who may be holding the camera.

And then there is the young one.  He is hanging on to the ride's bars for dear life, and loving every single moment of sheer terror.  Gleeful terror.  Terror with abandon.  The young one is staring straight at the camera. He is so excited he may yet jump right out of the car.  He can barely contain himself.  He cannot believe everyone's feet are off the ground - OFF the ground!!  This is over, over, over the top for him.  This beats Christmas, and it's summer.   He loves being there with the Dad and he loves the thrill of the ride.  You can almost hear him across the decades: "look at me, Look at Me, Look at ME!!!".  You can see in the photo he's a daredevil already.  And not the kind who doesn't know fear - those are the ones who climb Mt. Everest "because it's there".  No, this little boy is the other kind of daredevil.  The one who feels the fear and the adrenalin that accompanies it and just can't get enough.  Already hooked on a thrill.  Doomed by the thrill.

The Dad will die young; he'll be unhappy.  He'll leave those two boys.  The older one grows up to be the white sheep until arrogance gets the better of him. But it's an insipid arrogance.  Like Paul McCartney - too interested in making sure he looks good working;  not interested enough in excellent work.  He drank his own Kool-aid. Insipidly.
And the young one, the little boy.  He'll grow up seeking thrills.  He'll miss the Dad forever; he'll never comprehend his loss.  He'll become alcoholic; he'll be confused why life has so many failures.  He won't understand what happened to the thrills.  When did adrenalin get overtaken by shakes, hangovers and blackouts?  Why can't he get it back?  Where the hell did it go?

I still miss him sometimes.  I wish I'd known the Dad who wore neckties on Ferris Wheels.  And I wish I had the photo to put on this blog.

Photo by Penelopejonze, find her on Flickr http://www.flickr.com/photos/penelopejonze/