It's Anxiety Day

Not sure why; sometimes this Sudden Cardiac Arrest (SCA) anxiety just comes out of nowhere. Physically, I've  been fine, active, chugging right along.  Visiting the INSPIRE website for SCA  is usually a positive experience for me; we take natural human comfort in finding and interacting with our communities, be they actual or virtual.  We find people with more issues than we have and we find those with fewer.  We offer a hand; we tentatively put forth something we hope might help or be insightful - and we seek the same.

SCA is like many things - it's tough, it's frightening. For most of us, it came from nowhere - your heart stops without diagnosis or warning - and you come back. Well, some tiny percentage of us comes back.  Many get an implanted defibrillator (ICD); mine is Skippy.

My relationship with Skippy is complex; I love having him in there - laying in wait to come to my rescue.  But I am frightened of him; he comes to the rescue with a shock - a big, bad, painful, terrifying shock.  I haven't had one (yet) and I may never have one. Or I could have one 10 minutes from now.  No-one can say.

Today, the Inspire site filled me with anxiety.  I read one too many stories about people and their ICD shocks. And the accompanying pain and terror.  Some shocked once (appropriately), more than one shocked over 50 times in rapid succession (maybe or maybe not appropriately).  Envisioning that has freaked me out. (I can just hear my friend J. saying -- the answer is simple - don't read these things.... He sees causality in a creative kind of way...)

I'm going to the beach now. I never go during the mid-day in the summer. But I am going now for a walk. Cell phone in hand.  Just in case.
Crap.

P.S. I found the above cartoon in a 10 second google search. It's already made me feel better.
P.P.S.  The cartoon is used courtesy of www.nataliedee.com

We Are Not Alone

I found a new friend this week....he's like me.  Really like me, except not quite.   He is a guy.  We both survived Sudden Cardiac Arrest (SCA) and survived it with minimal damage.  It seems neither of us has any brain damage - a horrifyingly small club.  So we have all that in common; we are SCA survivors and we are very, very lucky.
We both live on the coast; we were scuba divers; we both used to have very low resting heart rates.  He is braver than I am; he has continued to dive since having the SCA and since having the defibrillator implanted.  I can't bring myself to do it.
 We are both in our 50's, we are single.  We have been athletes, though he much more so than me.  We  have defibrillators implanted in our chest walls, we are both bright and we sometimes struggle to make sense of all of this.  Mostly, again, we are alive and we are fighting fear.  We're both determined not to succumb to fear, in spite of the very scary fact that there is something wrong with our hearts that 'they' cannot fix.  All they can do is stick some goddamn box in there to shock the crap out of our hearts when the rhythms go haywire.  We are often grateful, and sometimes we're just pissed off.  We both know people who wildly abuse their bodies with tobacco, alcohol, etc. and apparently have hearts that chug along very nicely. We know it's a waste to even think about that, but every now and then.....

We are both terrifically frustrated by the lack of data, by the lack of clear, certain information about why this happened, about what our futures hold.  His present is even more unsettled than mine, so he probably feels greater pressure for answers. My defibrillator has not fired in now almost two years - and his has fired many, many times.  Sometimes appropriately, sometimes not.  I sympathize with him while being very selfishly frightened of the prospect of that happening to me.  Thinking about Skippy shocking my heart - either once or repeatedly - is almost too frightening for me to envision.  So I don't.  Or I try not to.

One other stark difference was our initial responses to the SCA.  We both awoke to unknown cardiologists telling us our new story and then telling us that because of our good health (aside from the stopping hearts, of course) and the lack of clarity on the cause and the future events, we needed to have defibrillators implanted immediately.  Being the girl,  I thought - sure.  Put the damn thing in. It was my insurance policy.
My new friend - the guy - reacted differently.  In his eyes, the lack of explanation and prognosis was not a reason to stick some foreign object in his chest wall with leads running into his heart ready to give shocks.  Instead, he walked out of the hospital without the defibrillator and would not get it implanted for another year.  A whole year.  We are the same and we are different.

I am so glad to have met him; on our first call, we talked the better part of an hour.
We both see this life of ours as struggling to find the right role for fear, to find the balance between being rational about the fact that the heart has taken to stopping and we have defibrillators in our respective chest walls.  We need to be rational about that, but both of us refuse to let fear dominate our lives.  We don't want to be stupid, but we can't be timid or overrun by it.  Every person on earth faces this balance, but if you toss SCA into the mix, the line between the two moves around.  It is a struggle to sort out which are fears to be overcome and which are the ones that we need to heed and adjust our choices.

I have a new friend.  As I said to him, I am so glad to know he is out there.  Alive.  Not terrified.  Living a life.

Not alone.  Company feels wonderful today.  This is gratitude.
(I would never have met him without the Cardiac Arrest website (Inspire.com).  If you have found this blog because you searched for information on SCA, I encourage you to visit inspire. And if you are reading this because you are a friend, thank you.)

My Favorite Character

(this post has nothing to do with Sudden Cardiac Arrest.  Sometimes, it just doesn’t).

I read a lot.  I see a lot of movies.  I get out some.  So I meet characters.  Introducing D.

D has an extraordinarily well crafted persona, carefully and consciously constructed, far beyond what most of us attempt.   This persona is not casual; it has a job to do.   Most of us put some polish on our personalities, we smooth our rough edges.  If the analogy is to a woman putting on makeup, most of us slap it on, spend 5 minutes and a quick check to make sure the lipstick is in the general vicinity of the lips.  But D – he'd stand before the mirror for hours; he tests different combinations, he plays with shadings, he knows his angles.   This is serious business, this persona.

The finished product is so carefully and skillfully constructed that it’s nearly invisible.  Meet the persona: the man most often described as a great guy, a charmer, fun to go out with, women adore him, he is invited to parties.  Above all else, he is affable.  Seriously.  Many of us strive for honorable, admirable, or at least worthy of respect – this man has aimed for affable. And he made it.  He’s never been in a fist fight, he’s never been arrested.  He doesn't argue, he won’t confront.  But of course, the problem is that he won’t confront anywhere – not other people and not his resident demons.  Everyone knows him, everyone likes him, no one respects him, he has no genuine friends.  

He lives a unique, sloppy life with more failures than successes, but the failures destroy only him; no-one else is harmed.  He has failed to manage money, failed to control alcohol in his life, failed to stay solvent,  he has failed to sustain any relationship.  He has failed to develop the skills to cope and prevail when faced with life’s curveballs.  Instead, he reacts as he did at 15 – he drinks and runs, runs and drinks.    

His friends have largely fallen away; they have moved to adult lives with homes, wives, children, jobs.  D now has buddies instead of friends, and those buddies seem to become a little younger each year.  Instead, D interacts most easily now with teens; they still think he is cool.  High-schoolers, maybe college.  Just the boys.  Not the girls.  He’s not a pervert.  Though there may be a thing about feet. 

When we first get to know and enjoy him, it’s because he’s bright, witty, self-deprecating in a light-touch way, enormously charming with a kindness that he doesn't see as the exceptional rarity it is.  (He is a mess, but he is extraordinarily kind).  Initially, knowing him is pure pleasure.  It’s fun; he's fun.  Then of course,  he inadvertently reveals bits and we begin to see the wreckage. One bit at a time.  Various forms and shapes of bankrupt. 

This is him at his worst.  In the sober light of day -- he remembers that he has let down the guard.  Even an inch is too much.  Fear and self-loathing crash out from the persona’s armor.  He tries to corral them the only way he knows how.  More running.  More drink.  Binging.  Scotch in the morning.  Nothing works.  Cracks turn into fissures - all over the persona.  Panic.

Whoever has seen the bits, D erases them from his life. Delete. Even if he loves them.  He cannot bear it.  The reflective shame is too much.  He will happily abandon love to escape that shame and loathing. 

These are D's worst days - this onslaught of panic, shame, despair. He knows only one way; this is not multiple choice; no A, B, C or D.  He doesn’t think it through, he doesn’t talk it out,  he doesn’t write to find clarity, he seeks no counsel.  He sees only one door. Full tilt run;  he doesn’t know how to stay.   He can’t.  He runs;  he is gone. He is alone again, but he is relieved.  Safe.

On a sober day, or in a sober hour, he knows his life is wrecked.  He knows the booze is ruinous; it is both cause and effect of all the other failures, and he knows this.  He knows that his life now consists of waiting for the next disaster, and he knows it’s around the bend.  The only mystery left is what form it will take.

He’ll never have a woman in his life again.  Not really.  Catch-22.  He tried a heavy drinker and it turned to disgust.  Over time, she disgusted him; she was him.  And he has had non-drinkers - that is a simple impossibility for him now.  

This disaster is my favorite character. It defies description how far short he sells himself.   Life is a mystery.

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.