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.

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". 

Christmas - Only Ten More Days 'Til It's Gone

I know I should be grateful and filled with Christmas spirit - whatever the hell that is.  I'm not.  I'm annoyed, cranky, irritated.  I don't like Christmas.  I used to.  But I used to like bologna too.  And knock-knock jokes.  And Soupy Sales.    Well, I think I'd still watch his Black Tooth and White Fang.  http://www.youtube.com/watch?v=NNv3rVV1mfs&feature=related .  
I despised the family-of-origin Christmases - drunkfests that went on for decades.  Rough on the mutant nearly non-drinker, though my ex-husband loved them.  Then the real ruin of Christmas was the "death year".  My mother and my sister both died between Thanksgiving and Christmas one year - the sister of alcoholic cirrhosis at 51.   Slogged through heavy water that year.

And now,  I am cranky in the run-up to this, my third Christmas since the SCA, though I am glad to spend it at home - my first in this home.   I am glad not to be travelling,  happy to be hosting friends that day for dinner, but that's about it for happy.  The rest is pretty cranky.

So no, I am not filed with Christmas spirit.  I'm filled with irritation, annoyance, rancor, acid.  Whatever the noun is for peeved.  Pettily peeved, that's me.
I got a tree yesterday, but it's not standing up straight.  Today, I had to go back to where I bought it  -  I realized last night I'd forgotten to pay for it.  I expected them to be grateful and surprised that I had come back - perhaps just a little fawning.  Nada.  They said they knew I'd come back to pay.  I know I should like that - I don't.  I expected gratitude.  Compliments.  A halo perhaps.  See? - Pettily peeved.

I am sick of hearing people debate "Merry Christmas" v. "Happy Holidays".  I have considered de-friending or hiding from some Facebook friends who have posted those bizarre "put Christ back into Christmas" crap.  One said non-celebrators should go back where they came from.  What?  Go back where?  Do we now assume that everyone who doesn't say Merry Christmas is an illegal immigrant?  What the hell is the connection there?  Do these people have no friends who are Jewish, agnostic, seekers, Buddhists, miscellaneous?  How is that possible?
And what the hell is "put Christ back into Christmas" anyway - what does that mean?  Santa Claus's in mangers?  Baby Jesus' figures on candy canes?   Mistletoe in the shape of  the Star of Bethlehem?  Three Wise Men sliding down a chimney?  And now I'm irritating myself.

I am incredibly grateful for one thing this season ----- my radio station plays perhaps one Christmas song per hour.  If it's not the Band's Christmas Must be Tonight or John Lennon's So This is Christmas or Adeste Fideles, I don't want to hear it.  OK, maybe a really excellent rendition of Oh, Holy Night - but that is it.

As kids we count the days until Christmas.  Now, I count the days until the day after Christmas.

I'm full of Christmas rancor though I am faking it, trying to cover it up.  But the rancor is all over the place.  Annoyed at lack of fawning.  Annoyed my tree is not standing up straight.  Annoyed I have to find new places for Christmas decorations - we always put the things in the same places, and this is the first year in this house; I have to figure out new places.  Right now, the new place is "still in the box".  I may go with that.

I'm annoyed with my lost friend.  He missed me last year and I liked that.   I was on the beach today (75 and magnificent) with my unruly dog - whom I'm thinking of renaming Calamity.  The ocean was perfect - long intervals between slow, gentle, excellently formed waves. Impossible blue.  Perfect sky.  Again impossible blue. Warm, not hot.  Smelled perfect.  See forever on the horizon.  And I thought "You idiot. We could be boating.  You could be teaching me to fish".
  Tomorrow I'm going to Raleigh to watch Syracuse play some basketball.  I hope they beat the stuffing out of NC State.

Ah, the 26th - a mere 10 days away.  Then I can go back to being a happy person.

Devoid of Jewelry

Sometimes you encounter a phrase floating by - and then.... what?  What was that again?  Hold it.  Rewind, please.  A few weeks back, a dear friend told me a story that revolved around one such phrase.  It went by and then stopped.  It has rolled around with me ever since.  Seemingly innocuous, annoying as hell.  

A family member of my friend was in therapy.  During a session, the therapist left the room and the 'patient' snuck a peak at the notes on the desk.  I probably would do that.  Or at minimum, I would want  to do that.  And the notes the therapist had written went something like:  "She is completely devoid of jewelry".

Devoid of jewelry.   Those words just sit there.  The therapist wrote those words on a page, to put in a file.  There is something so offensive about it.  I like jewelry as much as the next woman. But that little phrase bothered me, and it's been bothering me for weeks.   Devoid of jewelry.  In a therapist's file.   (It reminded me of an old-fashioned doctor's referring to the "lipstick effect" - he thought he was so insightful by commenting that if a female hospital patient donned lipstick, she was on the mend or showing good mental health.  Trite.  Throwback to my parents' generation). 

But this therapist is not of my parent's generation, and I continue to be annoyed and irritated and insulted by the comment.  "Devoid of jewelry".  Was there supposed to be some genuine insight there?  A diagnosis?   It trivializes a woman; it trivializes a patient.  (And does the therapist note when a man is over- or under-   adorned with jewelry?  Do we make accomodations in the amount of 'acceptable' jewelry a man wears - do we allow more for men from New Jersey?)

I was devoid of jewelry today.  I went out and made several stops; so alas and alack - I was seen in public being devoid of jewelry.  And no lipstick either.   Horrors.

And why was I devoid of jewelry?  Was I having a breakdown?  Was I depressed?  Withdrawing from civilized society?  Sinking into despair?  Lashing out or acting out against some unknown therapist somewhere?  Succumbing to darkness of mental illness?

No.  No to the unknown shallow therapist out there.  No.  I was devoid of jewelry because I had dropped one earring somewhere along the way today.  Instead of walking around with only the other earring, I made the deep decision to yank out the survivor.  Oh - and the 'spare pair' that many of us keep in the car (like a spare tire) had already been used.  Whoopsie.  Perhaps in "smug, trite therapist school" there is a separate category for being devoid of jewelry and devoid of the spare pair).

So there I was.  Devoid.  

Here is what I would like to say to the therapist.  Go to hell.  Wear as much or as little jewelry as you would like, but begone with your shallow self. 

Back to the business of life.

Dammit - SCA Claims One of Our Own

We survivors of Sudden Cardiac Arrest (SCA) meet one another on various websites - much like 'survivors' of anything in this age.   On one of these sites, I have 'met' some friends and people I care deeply about.  We exchange our stories, our experience, our fear, our hope, our successes and at times, the despair of loss or impending loss.

I am an incredibly lucky survivor.  I had my SCA inches away from defibrillator paddles and a few feet from people trained to use them.  My heart - which had stopped without warning -  was restarted after three shocks from the paddles - in a matter of moments.  In less than a couple minutes.  In other words, I recovered without heart damage and without brain damage.  Lucky beyond lucky.  Unlucky that my heart has taken to stopping, but incredibly lucky about where I was when it first happened.  My heart stopped and I didn't die.

So we find one another.  Survivors, those whose loved ones did not survive, and the ones that make your beating heart ache - the loved ones of those who are hanging on, who are battling against devastating brain injury.  Their victims are often young (SCA doesn't discriminate by age) - their loved ones are 25, 32, 47.  Their screen names are both proud and plaintive statements - these people want some help, they want miracles beyond what we survivors can offer.    They are Mike's Mom, Jim's Mom, Jenny's Sister, Dee's Mom.

Mike's Mom suffered her final loss this month; Mike who had survived with extensive brain damage; Mike gave up his ghost. When Mike's heart stopped the first time, with his SCA, he was 47 and just passed a physical with flying colors.  This is the tyranny of SCA.

I ache for Mike's Mom and for all the others.  I am again so humbled and grateful for the SCA experience I had - brain and heart intact - with the welcome addition of Skippy the implanted defibrillator.
Mike could have been me.  It could be you.  It could be someone you love.  You could be Mike;  we could all be Mike's Mom.

Today I regret every trite, whiny post I've put on this blog.  Every post about my alcoholic-addict men/boys,  the disappointing buena man,  each post about my SCA fears, every post bitching about having to give up scuba diving.  Shut me the hell up.

Today belongs to Mike's Mom and all the others who battle through those post-SCA injuries that I somehow skated away from.  Please accept my deepest, most heartfelt condolences.

Cranky: Shingles Belong Only on Roofs

OK, I'm not in a good mood.  Could even be called a rotten mood.  I don't run in the direction of self-pity very often, but today, I may indulge it.  Well, maybe for 60 minutes.

I have shingles.  On my forehead and scalp.  Yes, I have been to the doctor, yes I am taking antiviral medication, yes I had chicken-pox as a kid  (I was one of 7 kids - we got everything).  Aside from the pain - which is nothing to sneeze at, here is why I am cranky---------

Today, I believe that if one gets Rheumatoid Arthritis (RA) in your thirties and has Sudden Cardiac Arrest (SCA) in your fifties, you should get a flipping bye on some of this other crap like shingles.  Yes, I know that RA raises the risk of shingles (compromised immune system and all that), yes, I know the medication for RA further raises the risk (more compromising), but still.  Should get a bye.  Certainly, all survivors of SCA should be able to skip this one.   Really --- just because I say so.  Well, I'll bet we would all say so.

Cranky, self-indulgent, irritated.  Don't like having to take pain medication during the workday.  Fretting about how to wash my hair.  To crawl out of this pity session, I will remind myself that generally, I don't care about infirmities that I know will be going away in a few days.  But screw it, I'm going to just be cranky for another 45 minutes or so.

This could be the most boring post I have ever put up there. Or I sure hope that it is.  Blessedly, it appears it will be short.  I can't seem to make shingles funny.
Welcome any help there is on that.

Lurking - I Have Become A Lurker

Guilty admission: I have been lurking in men's 12 step phone meetings.   I'm not a man, so I know it's weird, I know it's embarrassing - or should be.   Here's a few more effects of Sudden Cardiac Arrest (SCA); 1) I've probably become more honest and 2) I don't give a rip about things that should embarrass me.  I think the motto of SCA survivors may well be "F__k it".  

So yes, I've lurked this week.  I'm a veteran 12 step program person - Alanon.  That's the one for people who supposedly don't have an addiction themselves, they/we just happen to love or care about or obsess about a person who does have one.  So I know the lingo, I know the ropes.   But this is different; I've been shocked by the men with whom I have lurked.

Alanon saved my life a few years back, it truly did.   I had surrounded myself with so much alcoholism, some I believed by unwitting choice, some by genetics.  I was a mess by the time I first stumbled in;  my dad had died of cirrhosis, a cousin lost by 40, my marriage unraveled, an understanding that my older sister was a way-down-the-line alcoholic.  She would be dead at 51, but we didn't know that quite yet; there was a little bit more blessed ignorance on that one.

So I became an Alanon devotee, and it worked.  You can regain your footing, you can let the alcoholics go, you don't let their disease/crap/'ism' dominate your life.  Then you can turn back to your crap.  Then something else happens, the dirty little secret.  There creeps in a smugness.  We are subtle about it, or we think we are - if we have any awareness of it at all, the creeping smugness. We wrap the smugness up in kindness, in sympathy,  in tolerance,  in coo-ing recovery type noises.  But it's there.  Smug.  They, the alcoholic/addict/gambler/eater - they are screwed up - I'm fine.   At the end of the day, when we are privately honest with ourselves, we'll acknowledge our belief that our emotional health would have been intact had we not been forced to associate with the alcoholic/addict.

Of course, I had sought out some of them - not the sister or the father or the cousin, but the others; I had sought them.  I have come to understand  that this is my crap; they are symptoms of my mess.  This I learned from lurking in men's meetings.  Phone meetings; I figured they'd never know.  And there, on those lines, were healthy recovering men. Far healthier than me.  Far healthier than I had guessed men could be.

So I lurked. I stayed muted. They'd never know.  I was stunned.   With that latent smugness of mine, I have grown so accustomed to thinking of addicts/alcoholics as flawed, as less than.  These were the men who were the bane of my existence, the ones I tolerated, loved, hated.   These meeting men were different.  They were breathtakingly healthy.  Their spiritual life is on more solid ground, their emotional health stronger, more honest.  They had come to terms with their shortcomings and compulsions in ways I never had.  They are searingly introspective, deeply committed to living the fullest life possible, they have firmly put into the number one priority slot: their health and the health of their relationships.  These are not the men who pass through life just putting one foot in front of the other.  They aim higher, far higher.  They aim at happy, joyous, free.  They aim for a shame-free life,  eradication of self loathing and self destruction.  They choose health and they choose the work it takes to get there. They are heroes.

Lurking there - it was humbling, disturbing, inspiring, a little scary, slightly embarrassing, and I am going to do it again.  

Aren't I ridiculous.

photo by daustin@sandcarveddesigns.com