SCA Manufactures Fear

Fear multiplies now, and I swear it didn't use to.  Sudden Cardiac Arrest (SCA) is scary for everyone. I mean shit - it kills you in an instant and then if you are in the lucky 2%, you get to come back from the dead- so yes, it's scary.  And for most of us, SCA comes out of nowhere; we had no warning, no diagnosis, nothing - just zap.   A startling kind of fear.

I have a pretty longstanding attitude of not being a fan of letting fear win (though sometimes it certainly does).  That almost pugnacious or competitive attitude carried me through many post-SCA adjustments and situations. After the SCA, there was sharp, piercing, breathtaking fear for so many 'first times'.  Fear the first time riding a bike fast again - done.  Check.  Swimming alone in the ocean again - check.  Sex - check.  Heart-pumping exercise - check.  The list is long, but I had thought it was finite.  Click through them one by one and I will get to the end.  Nope.

Now comes a new one.  I had unrelated surgery last week, surgery that required general anesthesia.  In the middle of the night before, I suddenly woke up - oh crap, what about Skippy, the implanted defibrillator?  What if I'm under anesthesia and my heart stops or stutters and Skippy fires off a megajolt while the MD and his scalpel are millimeters away from an important body part?  (as opposed to some unimportant body part.).  I could not believe that I, the planner, hadn't thought about that. I had updated the will (seriously), done all the laundry (seriously), prepared food to last through some sort of invasion or apocalypse, I had asked all the prudent questions about recovery, etc.  Yet somehow I had missed the BIG one until the middle of this night.  There it was again - that cold, icy fear.  New one.  SCA spawned a new one.

(It turns out what they do is place a magnet over Skippy to disable it while you are under. After all, the big bad defibrillators are right there in case something goes wrong.  It seems almost funny to say - it's nothing to worry about, nothing to fear.  Almost comical.)

But new fears continue to come from nowhere; I think they may never end.
SCA manufactures fear.   One more down.  Check.  God love magnets.

Renoir, Hayes, and Shut Me Up

"One must from time to time attempt things that are beyond one's capacity". Pierre-Auguste Renoir.

For years, I thought Rheumatoid Arthritis (RA) would be my dominant health issue.  I inherited that one (in my 30's) from the maternal side of the family.  It's nothing to sneeze at, to be sure, but it certainly hopped into the back seat when the Sudden Cardiac Arrest (SCA) arrived.  RA is in the family of 'auto-immune' disorders; as with MS, lupus and others, the body attacks itself without anything resembling a decent explanation.  Or a cure.  Charming.

Renoir had horribly crippling RA and in his last years, he had assistants tie the brushes to his mangled hands so he could continue to paint.  Some of his masterpieces.  Yesterday, I met Mr. Ivey Hayes, an artist here in Wilmington, N.C. who struggles with and overcomes the same aggressive strain of RA that Renoir stared down, the same that destroyed my mom's hands, feet, knees and other joints - before she turned 50.  (My RA, fortunately, is far less severe.  I credit Dad's ironclad, gin-fortified, indestructible DNA).

There are numerous photos that survive of Renoir's last months, with those same mangled hands.  I know people who cannot bear to look at them.... I worked hard to get my hands on a couple copies as I find them inspirational beyond words.  If he could do that....


I am honored and humbled to have met Mr. Hayes, same as I am each time I stand before Luncheon of the Boating Party, same as in knowing that the Renoir photos exist.  Makes me remember to shut the hell up.

(Mr. Ivey Hayes is on Facebook).

DAMMIT

Have you ever wished you were different?  I don't mean taller, shorter, thinner, better hair.  I mean different.  In a significant and fundamental way.  A substantive way.  Like you wish you could tolerate something you find inherently intolerable.  Something that is painful for you to see in a loved one - you want no longer to care about that.

You wish different things mattered to you - important things.  You wish you were more like some other person.  Some part of you that makes you distinctively you - you want that to go away.

I wished this today, and I honestly do not remember ever having done so before.  It is not a happy thought.  But I wish it today.  I hope this is a short-lived post.

Endings and Artists

I heard an artist speak the other day about some of her work. She pointed to a couple textiles and said something to this effect: "I realized I would probably never have that particular experience again, so I gathered up pieces of things.  I wasn't sure what I would do with them, but I knew I wanted to keep them until inspiration arrived".

I am not an artist.  My only medium is this - words.  I am horribly unobservant generally - or to put the best possible face on it, I am highly focussed.  And maybe a tad literal.  I was struck by the artist's having a sense of certainty that she would never pass that way again.  I have missed far more of those than I have caught.  I see them only in retrospect.   With people, often I didn't see it until the ending had arrived and already gone.

Would it be different if I had that artist's sensibility?  That I saw in that moment that this was an ending?  Would it change the experience? Would I behave differently?  Would I have fewer regrets, more regret?  Thinking of the endings that are losses through death or some demise:   Relationships gone.  People gone.  Would I have wanted to know that day was an ending?

My medium is words; so in considering endings, I hear the last words spoken between us.   My Dad's to me were "everything is all messed up" and my response something like - well, yeah, it probably is.  My Mom's "Can I have more stuffing?" Mine - well, sure, it's Thanksgiving.  With a cherished uncle, one of us said "See you for lunch Tuesday".  A sister who died too young, I am horrified to say I don't remember.  And with a lost relationship: "I promise we will talk about this".  Relationship lost, promise lost.
In each, I didn't know those would be our last words.  I gathered no items to mark the time and space as the artist did; I just took the fallible memory of the words.  Had I known I was sitting in an ending, I don't think I would change the parents or the sister; those days had come.  With the uncle, I would say - no wait, Tuesday is too late, let's make it Sunday.  Silly, but true.  He would be just as gone, the hole he left just as big.  But I would have tried to change that ending.  Somehow.  Make it bigger, make it last longer.  Something.
And that lost relationship?  Had I known that was our last day, I would have tried something.  Probably the ending was as certain as the others, but the ensuing edges were more jagged than they needed to be.  Or so I think.  A little more thoughtful observation here, a little more sober courage there.

Final acts are on the mind these days.  Endings looked different to the artist, perhaps they can sound different to me next time.

With thanks to Fritzi Huber, the artist.

The Hearts of Young Men

I have e-met a number of young men who have survived Sudden Cardiac Arrest, or come back from the dead, depending on how you look at it.  Recently, a 24 year old wrote to me after reading something I had written.  He wrote in such a way that my heart ached and I got pissed off for him - pretty much at the same time.

I was 56 the day my heart stopped; he was 23.  My primary career is behind me; I had the luxury of going to Law School at 51 and now work on interesting challenging matters for a handful of regular business clients. I have nothing to prove; all that career pressure has been spent.   I can do this for as long as I choose to work.

He, on the other hand, had more pulled out from under him than I did.  While both our hearts stopped, his situation is so vastly different, I fear they truly cannot compare.  Not only do I have a couple decades of adult problem-solving skills under my belt - he has so many more issues and dilemmas I had never really even thought about in my last year and a half.

He has to grapple not only with the standard questions that all we SCA survivors have - why me? will it happen again? will this kill me?  when?  But him - he has so many more issues - he has to grapple with the concept of getting married, does he become a father?
And then there is the career - he was a new West Point graduate when his heart stopped at age 23.  He had a career plan that flew out the window on his heartbeat.    Having SCA and an implanted defibrillator probably takes a young man out of consideration for many of those West Point grad jobs.  Certainly took him out of the running for what he had planned.

His implanted defibrillator has not been as quiet as mine. Mine has not fired.  He has had two episodes and no medical answers.  No flipping medical answers for the young man.  How is he to plan his life? How is he to plan his day?

There is a community out there; we try to help one another come to terms with all of it.  And then today,  I saw that my 24 year old who is scared, angry, reeling and struggling - had reached out to lend a hand to a 23 year old who was even newer to SCA survival.

Does a heart good.

Another Damn Life Lesson

All my life, I thought it was a virtue.  Parents pushed it, rewarded it, praised it.  Friends, colleagues respected it.  Our country reveres it.  Independence.  Family folklore is that I came home one day from second grade and announced that I no longer wanted or needed help with my homework.  Independence.

If one of the kids asked my dad what a word meant, he'd point to the dictionary or encyclopedia and maybe help you look it up.  More likely, he'd sit and wait until you figured it out on your own.  Fostering independence, a presumed virtue.

On a first date eons ago, the guy asked me to describe myself using only 10 adjectives. I should have said "difficult and done", but I didn't. I don't remember the 10, but I'm confident "independent" was near the top of the list.  A virtue.  I was proud of it.
Same guy, long past the first date, told me I was several standard deviations from the mean for independence in women.  (Yes, I dated a guy who talked like that).  But again, I felt complimented; I'm sure I said "thank you".

Independence. It enabled me to run a pretty high risk company; it meant I could tromp around Europe, Asia, and  the Middle East with a sister or two; land in the scary Cairo airport in the middle of the night. I can buy a house by myself. I could make myself dive again the day after my scuba equipment failed 118' down in Belize's Blue Hole.  I could go to Law School at 50.

But then, the bubble burst.  After Sudden Cardiac Arrest, we examine everything.  Last week, I read something on independence as an expression of fear.  That we create an armor with independence - we fend people off with it.  "Independence" is code for "I don't trust people" or "I don't trust that I am valued enough that people will be there when I need them".  We announce in hundreds of ways that we don't need people.  That what we are actually saying is "I don't deserve people".
Is this why I have always found it excruciating, nearly physically painful, to ask for help? The reason I would much rather pay someone to do something than ask for help?  Because I don't believe I deserve the help - they must  have something better to do?

All of a sudden, my self-talk and self-image went haywire.  Independence can be a bold expression of a deep belief in unlove-ability?   Bizarre.  Planet gone wobbly again. Is this frigging TRUE?  Argh.

Uh-oh.  Then I look back at my men through this lens. Uh-oh.  Perhaps we make this prophecy come true; we prove that we are, in fact, unlove-able---- by choosing to engage with the hands-down winner of the "emotionally unavailable" contest - the alcoholic.  And I have engaged with more than one, more than two, more than....  Trust me, you will always come in second.  Every single time - second.

I  must say I am getting pretty damn tired of all this food for thought, all these life lessons.
Difficult and done indeed.

My New Heart

Sudden Cardiac Arrest (SCA) changes everything.    At first, in my I-love-denial way, I  insisted that the SCA had little impact on my life.  In retrospect, clearly insane.    People like me have SCA when their risk of developing heart disease in the next 10 years hovers at 1% (Framingham).     But you wake up one day and some doctor is telling you that your heart had stopped, three shocks with the paddles, and it could happen again (or not).   Oh yeah, by the way, we are putting a defibrillator into your chest wall with wires into your heart.   Your actual heart.   And I am to see myself as lucky.  

 But me – I decide that nothing had really changed.  I may be brave, but I am nuts. 

It changes everything;  bit by bit, you examine everything.    And as we wind through that slow gentle upheaval,  we tell ourselves the truth about things we have long avoided.  Or perhaps it’s the lifting of clouds, fog and veil.   And I had grown very comfortable with my  fog and veil when it came to relationships.  I didn’t want to see what I could have seen.    I had adopted a persona and self-image I could live with.  Now, it’s a new heart and it’s a new life and that comfort slides away bit by bit.   There is discomfort, there is excitement, there is fear, there’s a sense the planet went wobbly --- but there is a certainty and a peace.  An uneasy peace, but peace nonetheless.  I won’t settle for what I had settled for; I won’t repeat what I had already repeated.   

Every relationship in my life is now different; some slightly and some enormously.  What I will look for, what I give, what I will accept, what I seek  – all different.  And I have come to terms with some of the nasty, sharp, jagged truths about my past choices.  I am guilty of what I blamed others for – they are, after all,  what I chose.   I chose those with whom I did not have to risk the most terrifying of all our states - intimacy. They were incapable of it; I was off the hook.

No more.  Not with this new heart.  I may be nuts, but I am brave.   I will have what I should have.  Me and my new heart.