Friday, June 27, 2014

That Other Gear

There it was again.  Beep, beep, beep, pause.  It wasn't loud or piercing; it wasn't the alarming sort. Beep, beep, beep, pause. I was in a store at the end of the day, on my way to the beach; I almost had to strain to hear it.  Beep.
Oh.  The rational response from a normal person would be lazy curiosity at the source.  Hardly half a thought, part of a nearly disinterested question.  But wait. I am an SCA survivor. I have Skippy the defibrillator in my chest wall.  I don't have the normal response.
Beep, beep, beep, pause.  I've had this conversation about beeps with my SCA friends and my mind hurtles forward, reaching to remember who reported what.  Oh crap, was that beep me?  Look around the store, any obvious source?   Oh crap.  What had they said, my SCA friends?   What did a beeping implanted defibrillator give rise to?  My idle curiosity about what was beeping had become anxiety and I knew with special SCA certainty that fear was right behind it, then terror, then panic. Strain to listen, strain to figure out the direction.  Beep.  Crap.

Ironically, the heart races - really not helpful.  I'm trying to remember as the fear starts to gallop - was a beeping ICD a precursor to a shock? Was the heart rate too fast? Too slow?  Knocked out of useful rhythm?  Wait - was it the low battery signal? All those possibilities in just few seconds.  Anxiety to panic for SCA people isn't a slow turn.  Instead, it feels like that bell at the start of a horse race --- from dead stillness to utter chaos in one stride.   Beep, beep, beep, pause.
We learn to stave off the panic before it arrives - quick, quick, use the brain.   Tamp down that adrenalin.  First things first - regardless of what the beep means, get out of the store. No matter what is going to happen, I don't want it to happen in a convenience store.  Beep.   A plan, get a plan.   Take a breath.  Calling 911 seems extreme; maybe instead drive myself to the nearby pseudo-hospital or 15 minutes to the real one. Wait. Drive?????.  An exceptionally poor idea.  Stop, breathe.
Deep breath. Beep.  Get to the car and see.
 Sit in the car.  Silence.  Breathe.  More silence.  It wasn't me. No beep.  Exhale.  It wasn't Skippy. Saved again.

After sitting with a few more breaths, to the beach we go.  Reminded with a mix of self-exasperation and gratitude that new SCA fear is probably permanent.   No matter what, a new fear will turn up and turn up and turn up.  Such is an ICD life.  Things will beep and create near panic in a nanosecond. They will or will not pass. But as I head to the treasured, tranquilizing ocean, I'm singing a long-forgotten song from my youth.  Go ahead, have a listen.  Beep, beep, beep.
https://www.youtube.com/watch?v=D4W7oZBhAJg

Monday, April 21, 2014

Skippy and Me

I recently saw Henry the cardiologist for our semi-annual chat.  I had a few questions for Henry, one of which was about Pilates and some scary sensations I have gotten in Skippy's neighborhood.  Skippy being the ICD, the implanted cardioverter defibrillator, the thing sitting in my chest wired to my heart.  Sitting there, laying in wait to shock me to smithereens if the need arises.

I love Pilates; I've been a regular for 7 or 8 months now.  But there are a few exercises and positions that I avoid.  They scare me - they produce odd sensations in my chest.  It feels like something 'funny' in the vicinity of the wires and leads that lace from Skippy into my heart.  The wires and leads are Skippy's appendages - sometimes Pilates creates something that feels like pulling on a lead.  That sounds relatively benign, but for a Sudden Cardiac Arrest (SCA) survivor with an ICD, it's terrifying.

Of course, SCA is a fear-spawner; it manufacturers fear.  Particularly in the first year, life was an onslaught of fears.  Skippy arrived with a great deal of baggage.  Bit by bit, month by month, you tame the fears one at a time.  Time works its magic and now, after Skippy's 4th birthday, a day with a new SCA fear is an anomaly.

But Pilates.  In doing Pilates, one stretches in some bizarre positions, pulling this way and that.  And the frightening sensation was a pulling - from inside the chest wall.  I could envision Skippy's becoming detached from something important and in a flash, there it was - that special, unique, icy SCA terror was back.  Nothing quite like it.

So I asked Henry.  He told me there were only three things I could not do - gain weight, smoke and resume scuba diving.    That I should think of the 'pulling' sensation as akin to muscles being asked to do more than they have done  -  there may be temporary discomfort and then the muscle reaches a new level of strength.  I get that; I understand that picture; I understand sports and muscles -- and I was more than mildly relieved.  Yes,  I could do everything in Pilates, but more important - one more fear wrestled to the ground.

Then Henry went on to paint a new picture.  He said that after 4 years, the ICD (he won't refer to Skippy by name) --  the ICD is no longer just sitting in the chest wall - it has been "incorporated" into my body.  Tissue has surrounded it. I'm not sure which word he used as he described it, demonstrating with his hands.  It was enmeshed or encased or encapsulated or integrated or something .  My body has surrounded Skippy.  It's a new, odd, freaky, and ultimately reassuring mental image.  I couldn't remember Henry's word so I choose 'embraced'; my tissue and my heart have embraced Skippy.

So there you have it - Skippy and I are one forever.  Until death do us part.

Wednesday, September 11, 2013

A Magic Date

September 5, 2009.  A date I will never forget.  Until I do.  That was the day my heart stopped for no reason at all.  In Sudden Cardiac Arrest circles, we/they will refer to the date as "the day I died" or "the day I died the first time" or the less macabre "my re-birthday".  For me, it's always been just the day my heart stopped.  Sometimes, I'll refer to it as "Skippy's birthday" - Skippy being the implanted defibrillator that came into my life and chest shortly after the whole heart-stopping-thing.

The first anniversary, 2010,  was awful.  Well, not truly awful - the heart didn't stop again, so it wasn't quite awful.  But I had heard so much from my SCA friends about celebrating the day - a whole year with an intact heart.  So as the date approached, I manufactured more and more pressure to mark the day in some momentous way.  But instead of joy, I was increasingly anxious as the date crept closer.  I re-lived the 2009 day over and over and over.  Instead of finding joy and celebration, I was scaring myself to a bizarre degree. Like there was a heart fate switch out there somewhere that would make it stop again - on this September 5th.  As if it would be an annual event.  In the end, I spent the day boating with a good friend.  A simple pleasure.

Then in 2011 and 2012, I vowed to let the date simply pass.  And I did.  No celebration, no anxiety; I knew the countdown; I was aware of it on September 2nd, on the 3rd, on the 4th.  But I did nothing to mark it. For me, that seemed the safest route - I think I was determined to make September 5th an ordinary day.

And then 2013.  I forgot.  On September 10, I realized that the 5th had come and gone.   I was so surprised, shocked even - pardon the pun.   It was done.  I had succeeded.  September 5 had been relegated to the ranks of the mundane dates.  I was relieved.  And a little bit sad.

 Such a neurotic; I feel bad that I forgot my SCA birthday.  Like I owe Skippy an apology.  Or a cake.

Friday, August 9, 2013

Italy's Beauties

I recently had the pleasure of Italy.  First a few days in Rome and then cycling through the vineyard-covered hills of the Piemonte region near Turin, a bit west of Milan.  At times it was hard work on hot hills, but it was spectacular.  As my sister aptly said, it felt like we were riding our bikes through a painting.
(And I'm happy to say that Skippy the implanted defibrillator was quiet and peaceful, even when the hills got taxing.  Another first as my Sudden Cardiac Arrest (SCA) 4th birthday looms).

     And then there was our cycling group.  It included 5 people who are veterans of multiple Ironman triathlons.  And my sister and I most assuredly are not.  Others brought their own pedals for their own special shoes.  And we didn't even really understand that sentence.  So mostly we saw these people at meals.

     There were a few I genuinely enjoyed; one from Hawaii and a couple from Seattle.  The Seattle pair  seemed great - smart, interesting, etc - call her Jane and John.  She also happened to be pretty and very stylish. She wore 'outfits' while biking, but not biking outfits.  She crafted her own look, and she had a "look" each and every day.  And turns out, a nascent fashion business on the side.  Or expensive hobby.  In any event, for Jane, appearance matters, aesthetics matter.

     I liked Jane and her husband through much of the trip.  One evening before dinner, the group went to visit a wine cellar on a working vineyard.  I don't have much curiosity about wine-making, so I sat by the house where the working family lived.  It was a beautiful early evening, lovely sitting outside as the sun headed down.  The family was ending their separate days; mother feeding the young kids, hanging laundry outside on racks, feeding two large dogs, a couple cats and an adorable litter of kittens.  I remember thinking she had probably worked all day and then had to face kids, dinner and laundry. It seems women may have tougher lives than men in rural Italy.

     And then we were at dinner; a 'family-style' dinner in a courtyard restaurant, our group at 2 long tables surrounded by local families.  I happened to be across from Jane and her husband and for conversation, I asked about the visit to the wine cellar.  She responded that it had been almost wonderful, interesting, good wine, that the visit was terrific with just one complaint. She thought the family should have taken in the laundry before our group arrived.  That our group was on an expensive vacation and we shouldn't have to see laundry at the vineyard.

   I was shocked; speechless in fact.  Her husband looked mortified.  And then I managed to say that I thought it was just a shame that she didn't have a dryer.  Then, because we are adults with well-developed social skills to use on travel with a group of strangers, I asked about the wine.

Beware the pretty ones; they can be marred.



Saturday, July 6, 2013

A Choice Day

Skippy the implanted defibrillator and I are off on an adventure; hopefully one that does not include Skippy's actually getting involved.  I wrote this post on the long travel day; it started around noon or so and ended I don’t know when. It’s an overnight day with a 7 hour time difference and I don’t bother with that math.  But it is a long travel day.
I have logged enough business travel miles that I should be deeply travel-jaded, and in some ways I am.  Destinations are fun; most of travel is tedious at best.   But amidst all the annoyance of the long travel day – luggage, delays, costs, TSA.  Amidst all of that, there is the one thing that I still love.  The one thing that apparently will never turn jade. 
       It’s the actual flying.  It’s flight.  It’s magnificent, and it never ceases to delight.   Most of the time, like all seasoned travelers, I’m an aisle-seat person.  Anything to make the day easier.  But on this day, my first leg was up the east coast.  From NC to Philadelphia.  I am not a million-miler and there are huge swaths of earth I have not seen, but I've been to a fair number of places.  And there is still not much I enjoy more than flying the east coast on a day like today.  On this flight, I always, always, always get a window seat.   Always.  On the east-facing side of the plane.  Picky.
     The first bit is dull, but then we reach water.  The Bay and then the ocean.   We come north up the western side of the Chesapeake, then the eastern shore, then the Atlantic coast around Maryland and Delaware.  On a day like this, even South Jersey looks magnificent.   Partly cloudy – enough clouds so they somehow make me miss scuba diving on walls, though that’s tough to explain.  Enough cloud that there are layers, discernible layers. You are above all clouds, then under some and over others. In an instant.  Enough clouds that you can almost feel them.  But not so much that it’s a solid blanket.
     Days like this it is astonishingly beautiful -  the coast stretching below and breathtaking clouds outside.  And just partly cloudy enough, partly sunny enough – that the sun reaches through to the tops of the clouds outside the window.  So we get that white.  That one in a million white.  The “can that be real?” white.  I always see it as ‘Renoir white”.  It turns up in his paintings – as a speck of light reflecting in a small dog’s eye and as a bigger dab in the bottom of the wine glass. Renoir white.  Impossibly white.
      It was a quick, magic hour and I loved every minute of it. 
      Small choices.  Had I taken an aisle seat, it would have been just another mildly annoying flight, delayed with many loud children.  Barely a flight at all, just travel. 

    A wonderful start to the adventure.  A choice day.


Saturday, March 30, 2013

Boys, Bars and Boundaries

My sanity is dependent upon boundaries.  Setting them, understanding them, recognizing when they are disguised and begging to be ignored - just this once.  My sanity depends upon adhering, obeying, stopping.  Stop.  Don't step over. Beware of the lurking, masquerading, slithering, moving about and not staying where they are supposed to stay.   They can be cunning and baffling.  Dangerous.  Stop.

My ex was released from jail today.  I still can't believe that sentence is true.  He was in there about a month.  Until this set of events, I had not seen him in three and a half years.  Big, bad, ironclad boundary.  Thou shalt not touch that boundary.  I had found more serenity than I'd known in decades by laying down that particular boundary in some material akin to rock, steel, kryptonite.  No getting close to that one again. Ever.  So I had vowed.

Until  about three weeks ago.  He was in jail.  And I was told about the wreckage that apparently has become his life in the past three years.  It spun me out of my safe, impenetrable, immovable,  nuclear bomb shelter boundary world.  How? Why?  It was incomprehensible that this was him, the man who was my husband, my significant other for decades.   I kept thinking it must all be a mistake.  This could not really be him.

Then, through his lawyer, came a request.  The type of request I had to say no to.  I'm so bad at recognizing that boundaries must must must be obeyed, adhered to, honored, respected - I actually thought about saying yes.  For a little while.  Then, you see it for what it is - my ticket back to non-serenity, the way to make wreckage out of my own life.
Then a second request - this for socks and underwear.  I had said no to that first request, but I could not possibly say no to this one.  It was socks.  And underwear.  How can someone ask for that?  But I can't say no  I couldn't.  So I saw him.  3 weeks ago.  It was disturbing beyond description.  He was many things; he was never this.   Three weeks later and the idea of it, the memory of it still takes my breath away.

Yesterday, I sat having lunch at a spot that overlooks a tee box at a golf course.  And a man - one of a foursome- he walked to the tee and did his pre-drive routine.  His back was to me, and it could have been Tom. It should have been Tom.  That is what he should be doing at this time in his life.  Playing a round with friends on a beautiful afternoon., wearing that purple shirt, khaki shorts, goofy golf shoes and an odd hat.   I almost let myself believe it was him.

It wasn't.  He wasn't there. He was still in jail.  He got out today.  I thought half a dozen times today of contacting him,  It is so hard to let oneself feel heartless.  To accept that you can't help.   I put my toes right up on that boundary line, but I didn't go over.  Not going to go over.  I can't fix that.

I didn't call.  I went to the beach.

Sunday, February 3, 2013

Lights and Damn Lights

We Sudden Cardiac Arrest (SCA) survivors are a diverse lot.  Old and young; healthy and not; brains intact or not so much; female and male; working, retired or disabled; intrepid or terrified.  Well, many of us are both intrepid and occasionally terrified.  What we have in common, of course is that our hearts stopped, without warning.  And somehow our hearts were re-started, unlike the 95% whose hearts were simply done.  We came back.  Some right away, some with a lag, some after unintentional or induced comas, but we came back.  We 5%.

For our brains, the hard, cold fact of it is that if the heart is down longer than 4 minutes, the risk of brain damage sidles up.  Cells begin to die after 4 minutes without sufficient oxygen.  You get more time with serious CPR, more time with hypothermia - but the magic 4 minute mark means risk of Anoxic Brain Injury (ABI).   Damage to the brain can be small, it can be moderate or it can be devastating.

I escaped ABI;  my SCA happened so close to defibrillator paddles.  Some other lucky souls were not as close to the paddles, but happened to be surrounded by people who knew how to do the new kick-ass CPR where your chest is really pounded,  You may break some ribs, but you buy time for your brain.

We chatted recently - a small group of SCA survivors.  We find each other online; we have those normal,  quick online interactions.  But now, we have talked; we had a conference call.  It was a pleasure to hear voices.  After a few minutes, it became clear that most on the call were dealing with ABI to some extent or another.  And this was what they wanted to talk about, this dominates their lives.    Sitting on the phone, I slid between stark sympathy and the guilty relief that it wasn't me.   They may struggle with impulse control,  with  memory, with the ability to process information, and then there is confidence. What made my heart ache was the toll ABI took on their confidence to navigate life, to communicate.  One was so fretful about her communication that she peppers her talk with "did I just make sense?"  Of course, she made perfect sense.  But she worried.  They all make perfect sense.  But they each worry that people are judging them, looking askance at their errors, not recognizing the heroics of their work to recover.   This is their centerpiece, and it makes your human heart hurt.

As our call wound down,  we  talked a bit about the odd or annoying things that people ask or say to us about SCA.  Most annoying is probably those who suggest we stop thinking about it and "move on".   You want to say - try that.  Let's say your heart stopped for no known reason and you have no idea whether it will stop again.  Go ahead.  Move on and stop thinking about it.
Try it.  See how many inches you can move that thought of its stopping again - how many inches away from your consciousness can you move that idea?

We each had our other irritants, but we all shared the top question:  "Did you see a light?"     That question gets tiresome.  And of course, it doesn't matter.   We did, we didn't, we don't care.

Hearts stop.  Some live, most die.  Some brain cells are lost.  Be kind,  applaud the effort that it takes to embrace life with hearts that have mysteriously and unpredictably gone off the rails.  Tell your ABI sister you are so proud of her progress that she fights, fights, fights for - fights for every single inch of it.
All that beats asking about the dumbass light.