Sunday, January 29, 2012

Annoying Attribution: Who Gets Credit for Surviving SCA?

We survivors of Sudden Cardiac Arrest (SCA) have strong bonds with one another.  We are members of a very small club - over 95% of people who have SCA die that day.  Big number.  Really, really big number.

Strong bonds, yes.  Agreement, no.  I just read another new survivor story - as with all the stories, your heart races a little with the shared fear of that day; you are grateful they survived;  then the fear and gratitude mix together -- and selfishly, above all else, I am glad I survived.  I can't turn away from the stories, but they are not easy, breezy reads.  They come with anxiety - mixed with some empathy, but self-centered anxiety all the same.  Then the last paragraph of this one erased my anxiety and replaced it with silent irritation.  I'd never respond, never offer criticism on that site, but this is my  blog, so here goes....

This person,  we shall call NewOne - this NewOne closed (as many do) with a rousing, ringing, soaring statement of certain knowledge and gratitude that the "Lord Jesus" had provided the expert CPR done by the husband,  had been responsible for the quick response by the EMTs, had guided the quick and effective use of hypothermia to reduce the body's need for oxygen, and so forth.  "Lord Jesus" had directly and purposefully done each and every one of those things ----just to save the life of NewOne.  To take NewOne out of the 95% and into the 5%.

Annoys the hell out of me.  My first thought is shit, I hope that the loved ones of non-survivors who turn to that site for comfort don't read this tripe.  The second thought - really???    Lord Jesus did all that to save you, but Lord Jesus elected to let B*, S*, M* and the other 95% die?  Because why?  Lord Jesus saw something in you, NewOne, that was somehow lacking in those who die?

I understand people have that kind of faith, that rock solid belief in a God who intervenes regularly in their daily lives.  The God who saves them from tripping down the stairs; who saves them from  that car running a red light, who saves them from a runaway train or shopping cart, who enables them to pass that exam (always wondered if he/she worked on a curve for exams?) - they believe in a God who rescues them over and over again on each and every day.  I don't believe that (obviously).  I believe in a Divine, but not one who is messing around haphazardly in daily life - oh, I'll electrocute that one with faulty wiring, but let this one live.  I'll zap that one with a lightening bolt.  Tornado slaughter here, blue skies there.  Oh yeah - don't let's forget Tsunami's - barely anyone gets out of that alive.  I find it fundamentally absurd.  

I am far more comfortable believing in happenstance than I am in a God or "Lord Jesus" who denies life to 95%.  It's my blog and I'll be sacrilegious if I want to.

Irritated.  Annoyed.  Still grateful for and acutely aware of my extraordinary good fortune on September 5, 2009.  The dice rolled my way on that date.

Photo owned by Rosendahl:  http://www.flickr.com/photos/rosendahl/2111805581/in/photostream/

Sunday, January 22, 2012

One Year

365 days.  One year.  Too lazy to do the math on number of minutes and seconds.  Gone. Spent. Invested or wasted.  Enjoyed or labored.  No matter how we think of it, it is one year and it is gone.

Post Sudden Cardiac Arrest (SCA), anniversaries are different.  They are better or worse; they are frightening or boundlessly joyous;  they are never the same as before.  This one is different even here in the land of different.  I'm giving myself gifts.  Gifts of joy and peace.  Just a light touch of longing on the side.

I invited friends to dinner tonight to ward off brooding.  Now I realize, I wouldn't have brooded regardless.  I'm happy.  It took me longer than I'd like to admit to get there, but I'm happy.   I've been  aware of the approaching anniversary, sort of subterraneously; it loitered and lurked.  But it didn't haunt; I didn't brood.  I am happy.  One year ago, I'm not sure I was.  I was deluding myself, imagining depth that did not exist, not seeing how far short I was selling myself.  Aiming higher today.  We should all aim higher.

Finally, one year later.  I see that it was shadows and fog.  There is little of substance there.  Or what  might once have been there has been doused, diluted, washed away, done in by fluids, by liquids; some kind of utter submersion had gone on.  But that is not my life; it is someone else's.  It's not mine.  Me -  finally, one entire 365 days later, I can enjoy the time we spent for what it was - it was fun, it was cute, it was safe.  And just one bit more.   It entered the door at exactly the moment I needed fun, cute, safe.  I shiver to think of what I would have done - how would I have found my way through that rough, ragged patch if buena fun, cute, safe had not shown up?  I'll always be grateful for it; always feel fondness.  It will always have a home in my stops-for-no-reason heart.  I will wish nothing but the best.

I aim higher now.  I'm so delighted to be able to say that.
I heard a song today that I adore.  The singer speaks with Cupid about his directional challenges.  Cupid laughs and says "Hah! - I don't take aim.  I only go bang, bang, bang".
I just need to watch out for that aimless guy.

Farewell to that year.  A loving farewell to that which was only very remotely possible.  In the sober light of day; in the light of a sober day I hope finds him.   Stranger things have happened - after all,  my heart stopped and I didn't die.  Fare thee well.

Sunday, January 8, 2012

Fear and Gratitude - Odd New Bedfellows

Life after Sudden Cardiac Arrest (SCA) is so often about coming to terms with fears.  I mean, it gets tiresome at times - one more cold, icy fear rears its head.  Of course, with or without SCA, we all live with fear and we find our way - we each decide which fears are useful and which are not.  Which fears will cause us to behave more prudently and which need to be wrestled to the ground or ignored so they don't stop us from living a brave, rich life.
When SCA happens - there are more fears and our lines between prudence and surrender shift.  Things that passed without notice now produce those blades of fear.   It's a different fear than I ever knew before my SCA.  Our hearts stopped and we didn't die.  Our hearts could stop again and we might die.  Or our hearts may stop again and we may suffer heart or brain injury.  No warning.  It can be terror.

Normal parts of life that were never frightening now are - until we beat them back or park the fear in a place in our lives or adjust to it or whatever choice we make.  Each SCA survivor grapples with the list of "firsts" and the fear that is part of the package with each one - first time exercising hard, first swim in the ocean, driving fast, driving at all, sex, mammogram, leaving home without a cell phone, walking through a metal detector, anesthesia, magnets - whatever. The list goes on and on and we tackle them one at a time.

I keep thinking the list is finite; I will reach the end.  No.  Wrong.  The latest is this week I will have a test, a cardiac test, my first for this test that involves deliberate stress to the heart. It's "routine followup".   I was terrified at the news.  I was moving from anxiety to full blown panic.  I couldn't' breathe.  My normal response to that level of fear is to sort out what I'm afraid of and then seek data, data, more data.   The 'what' is pretty straightforward. I'm afraid my heart will stop; I'm afraid my implanted defibrillator will shock the crap out of me; I'm afraid they'll find something else wrong with my heart (aside from the whole stopping-without-warning thing).  I researched it online and found a manufacturer's warning that the nuclear imaging substance can cause cardiac arrest and "appropriate resuscitation measures should be available".  Great, perfect.

So then I want data to quell those fears and therein lies the rub - there is no data. You want to know "what happens to people like me".  No data.  No people like me.  The cold facts are that over 90% of people who have SCA die that day.  And the pool of survivors is so disparate - we are teenagers and 80 year olds; we have diagnosed heart disease and we don't; we had a heart attack and we didn't; we have heart damage from SCA and we don't; we have brain damage and we don't; we have risk factors and we don't.  No meaningful data.  Nothing useful.  Nothing to fetter the fear.

So to stave off panic; I did what I never do - I turned to people; I asked for help.  I despise asking for help.  Sad, but true.  I am not a support-group type of person.  But I love my online community of SCA survivors.   So for the first time, I posted my call for help - help me, I am scared.
And voila - they are there - I was flooded immediately with responses.  So many of my SCA friends have had the test, survived without problem.  One told me he vomited; I suggested he shut up and have the decency to lie.  (Of course, I am still a data-oriented jackass, so I am cognizant that the dead ones are not responding to my call for help).

Amazing to me - the non-support group girl - the group was astonishing reassuring. I never got all the way to panic; the fear subsided to manageable levels.  I'm still me, so it's still there.  I'm still a nerd, so I've made arrangements for the dog, clarified that my emergency contact person is good that day to get a call if things go off the rails.  And I know me - the house will be tidy Tuesday morning, the will and other documents will be where they should be; I'll throw out or file embarrassing stuff -  I now have an entire "this could be that day drill".  Such a nerd.
But I'll do it calmly, not in a panic.

I've learned to ask for help.  I am amazed by that.  And grateful beyond words.


Tuesday, January 3, 2012

Harry Crews - Breaking Your Bones with a Whisper

John Zeuli Photography 
I read.  Books.  Generally, I avoid the "murder and mayhem" aisle, but there are a few exceptions, most notably Harry Crews.  Harry is a brutal minimalist.  In shockingly few words, he transports you into the world of his bizarre, dark characters.  The world is grotesque, brutal, hard, harsh yet oddly touching.  The cast is maimed, scarred, emotionally ruined characters, but a few remain somehow adorable or worthy of nurture, at least at times.  (My curse).  These people of Harry's live in tough spheres.  No one grills steaks in the yard for friends, no one drinks a beer or glass of wine for refreshment, lawns are not mowed, cars are towed but not waxed. (well, one is, but even that is frightening).   No one is at peace.  Anywhere.  No one seems to understand that one can even seek peace.

I first was introduced to Crews by a non-reader via Feast of Snakes.  There were snakes, but not much of a feast.  Feast of Snakes - it's mayhem.  It's ruination.   It's ludicrous.  I had to take breaks to breathe some air. Then I waited over a year to pick up my second Crews.  Scar Lover.  I just finished it - I'm happy and sad to report it's a hair milder than Snakes.  Maybe 2 hairs.  The characters are equally confused, damaged, walking in emotional circles.   These are people who get lost in the space between love and hate, between a punch or slap and a caress.
The great difference between Feast of Snakes and Scar Lover is that in Snakes,  ultimately I despised every character.  And when I closed the book after the last page, I never ever wanted to see any of them again.  In Scar Lover, they are still dark and broken, but there are several I rooted for. In fact, most of them.  I still don't want to have them over for dinner anytime soon, but I rooted for them.  Snakes was page after page of being flabbergasted that Crews could create this overpowering sense of impending doom with so few words.  And then manage to surpass the dread.

I don't know if I would have sought out Harry Crews' world (repeatedly it seems) before the Sudden Cardiac Arrest (SCA).  I've always enjoyed the edginess of edgy people, but I'm not sure I would have wanted to get to know the characters that go so far beyond edgy.  Reading Harry is not for the faint of heart, but my heart is no longer faint.  When my heart stopped beating 2 years ago, I think I lost interest in being faint of heart.  So I found Harry.  And sundry non-readers.
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I need to thank a few people who contributed to this post
First, I lifted the title of this blog post from a wonderful writer:  Happy to have e-met you, J. Scott Grand, and his blog post about Harry: http://jscottgrand.tumblr.com/post/3496543542/harry-crews-can-break-your-bones-with-a-whisper
Second - the photo above is courtesy of  http://www.johnzeuliphotography.com/harrycrews1.shtml
Oh, and thank you to the non-reader who introduced me to Harry. (channeling his Moon). Beware the recommendations of those who do not read. 
And here is Harry himself, with a description I adore and could not have managed to write.  He is magnificent:
"I never wanted to be well-rounded.  I do not admire well-rounded people nor their work.  So far as I can see, nothing good in the world has ever been done by well-rounded people.  The good work is done by people with jagged, broken edges, because those edges cut things and leave an imprint, a design".