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.

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.

By a Mile

Out of the corner of my eye, seeing him hang his jacket by the back door.   Laughing almost out loud at that ringtone I finally learned how to set up.  Almost too late.  Reaching to call him about a day's something or nothing.  The sound of his saying my name.

People who say it's time to "get over" a loss have never missed anyone.  Or have never permitted themselves to feel it.  That missing.  This missing.  That utter gone-ness.   In the beginning, it's not so much a hole, a gap - it's that your entire day just became a hole -  a "something that should be here is not here".  The entire day.  All 24 hours.

Days inch by and you cannot believe that after weeks and months, it is still the same.  The same absence is always present.  All 24 hours.
Then months and then a year and finally, some relief.  First it's only 23 hours, then maybe sleep returns to normal and its 16.  Then, then, then, you realize one day that there is more time in today without that absence than there is with it.

That alone brings enormous relief; you grasp wildly and strongly at the thought that your life may one day not be entirely about this absence.

Time moves more normally.  But still, there is no 'getting over it'.  It still slides back in some days, and when it does - sometimes the memory is sweet, almost pleasant.  And other times, it' not a memory - it is a present, again agonizing absence.  People who say "oh, he's still with you" are insane.  He is not here; his gone-ness is what is here.  His gone-ness keeps coming over for dinner, stopping by for coffee.  Overstays its welcome.

The word "miss" has probably 20 definitions and synonyms - from ladies to being off-target, escaping or avoiding, not getting it.  We are young misses, we miss the point, we miss hitting a car, we missed an appointment, engines misfire,  we miss beats, we miss the boat,  we miss out on any number of wonderful things,  we swing and miss, we miss chances, we miss payments.  We have near-misses, we mis-understand, misconstrue, misread and we make mistakes.

Today when we miss, we "feel the absence of".  So much of an understatement, it approaches misstatement   There are still these days, but tomorrow probably won't be another one.

Credits

We're supposed to die on our Sudden Cardiac Arrest (SCA) day.  Over 90% do.  It depends on where you are, who is around, how close to defibrillator paddles you happen to be.   Then the luckiest of us come back without significant brain damage.  And we find one another.  We ask each other questions we can't ask anyone else;  we answer the way we can't answer anywhere else.

We are the same and we are not.  And every now and then we find things we can't say even there.   Some things divide even us, even this group of survivors who were supposed to die.  We don't talk about politics, thank god.  And we don't talk much about god.

A few days ago, I was talking with a new-ish friend who asked so many questions about my SCA day.  Including questions about T, the ex-husband who drove me to the ER exactly 10 minutes before my heart stopped.  While we had split yet again, he was still living in my home, working on buying his house - my new-ish friend asked all those questions.

So I re-capped that morning over coffee with my new friend -  my waking up too early with a vague sense that something was wrong.  Spending 30 minutes wandering about the house convincing myself it was nothing.  Then finally yielding to the astonishingly lucky instinct to go to the hospital.  I woke T up, who by then had been banished to a guest room.  But he got up and he took me.  Where my heart stopped.  Dead.  Lucky.  Shocked back to life with three goes of the defibrillator paddles.

Then my friend asked me a new questions:  "So, he - the ex - he saved your life?".  My response was quick and visceral, though happily it was at least a litte short of harsh, but it was "No, he doesn't get that credit.  I don't give him that".   I was surprised, even at myself.   I told my friend and myself that no - I would have gotten to the ER before my last 10 minutes was up.  I wouldn't have called 911; I didn't know my heart was about to stop.  I think I would have driven myself.   The day would have been more complicated, but I think I would have survived.   But the most surprising thing is that even though I have relived that morning dozens and dozens of times, I have never once asked myself if I would have lived if he hadn't been here. Never once.  Not one time.

Should I "give" him the credit?  We survivors are all different in this - who gets the credit for our surviving that day.  Many of them give it to their God.  Other give it to their 'first responders' - the friend or loved one or good Samaritan or EMT who kept them alive until their defibrillator paddles shocked the crap out of their hearts.  I don't participate in those conversations, and I've never heard anyone give the credit to an ex-husband parked in the guest room who was being booted to the curb yet once again.   They all seem infinitely more gracious than I am.

I've hoarded the credit.  I've given it to luck.  That I had a lucky beyond lucky instinct and then another round of dazzling luck to get there in time.  Toss in even more luck that I'd been hooked up to the monitor or whatever it was so that when the nurse left my cubicle in the ER the alarms sounded as my heart stopped.  I've given all that to luck.

What a bitch.  I should probably thank him.

 .

At the Wrong Table - (SCA)

We survivors of Sudden Cardiac Arrest (SCA) come in many stripes.  We are each members of the small 3-7% club who didn't die that day - or at least, we didn't permanently die.   We are young or old, healthy or not, we know why our hearts stopped or we don't and we never will.  We have intact hearts or not;    we suffered permanent brain damage (ABI) from oxygen loss or we did not.   We are annoyed and perplexed that our hearts stopped and every single one of us is dazzled and grateful that we are somehow alive.  Most of us now see life as paradox - this was the unluckiest and luckiest day of our lives.  This was curse and magic.  We become seekers of something.  And in my nearly 3 years, I don't think a full 24 hours has passed without a wave of sheer gratitude - for life, and for my intact brain.  Many are less lucky than I was, and it can break your heart to watch them sort out their new brains.

Last night, in a different circle, I had dinner with a group of 8 - a few I know well and a few I didn't.  I found myself sitting across the table from a bright woman who had worked in healthcare for decades, in both  clinical and business positions.  She is probably around 60, very fit, very bright.  And smug.  Smug about her good health.  If I could have spoken, I'd have been speechless.  She takes full credit for her good health, attributing it entirely to her good eating and exercise habits.  Not just a little attribution - entirely.  Stridently, aggressively smug.  As if she "deserved" her good health, and of course, as if others do not "deserve" it.

We fell into the danger zone;  she doesn't like the new healthcare law.  She doesn't want to have to pay for unhealthy people, particularly when it is "their own fault".  She was smug and  harsh and ungracious.   Appetizers had just arrived; we had a long way to go.  In my youth, I would have argued.  Now, I quietly sit and muse at how a seemingly intelligent person could actually believe that a healthcare system could be modeled on "fault".  Skip the ethics;  one should be stopped cold with the understanding that those lines are impossible to find except in the egregious outlier cases.   Two seats down was a surgeon who had operated on two little kids that day - in my youth, I would have asked Ms. Smugness if an investigation should be done to determine if the babies or their parents had been "at fault" so they could be billed.   But I was quiet.  Told my stock self-deprecating jokes about my aged, now deceased parents.  Such deflection failed.  She returned to it throughout the meal.

I kept flashing between this self-congratulatory person and my SCA friends who woke up one day to learn their hearts had stopped and somehow they - we -  were alive.  In most cases, there is no pre-known cause and often, there is never a reason found.  Our hearts had gone haywire.  They may or may not go haywire again.

As I drove home from dinner - peeved -- I thought "with whom would I trade places"?   Would I rather have a heart that had gone off the rails, live with core uncertainty, and this need to search ----  accompanied by a deep gratitude - or would I prefer to be fit, healthy and smug?

I'll take my broken heart.  I'll take all our broken SCA hearts.  Next time, I'll sit at the other end of the table.

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.