HEART STOPS -

Unmoored

noreply@blogger.com (Marty) — Wed, 12 Aug 2020 00:43:00 +0000

Not adrift really. Just that crawling sense that something in the world is not right. Off. Off an axis. The old cartoon with the caption "the planet went wobbly".

My cardiologist died last week. A wrong death. He was 53 years old, in great health, top of his profession. He went for a dental procedure that involved "conscious sedation" and somehow died.

He's been a fixture in my life for 11 years. Nearly 11. I met him the day of my Sudden Cardiac Arrest. One of the first things he said to me was "This was not your fault. There is nothing that you did or didn't do that caused this to happen to you today". It brought tears and to be honest, it still does. For the life of me, I cannot quite articulate why that sentence, that kindness, that unexpected empathy meant so much to me that day and why it still does.

That was Henry. I don't know how this will go. I can't quite picture it. I can't bring myself to try.

That Other Gear

noreply@blogger.com (Marty) — Sat, 28 Jun 2014 02:06:00 +0000

There it was again. Beep, beep, beep, pause. It wasn't loud or piercing; it wasn't the alarming sort. Beep, beep, beep, pause. I was in a store at the end of the day, on my way to the beach; I almost had to strain to hear it. Beep.
Oh. The rational response from a normal person would be lazy curiosity at the source. Hardly half a thought, part of a nearly disinterested question. But wait. I am an SCA survivor. I have Skippy the defibrillator in my chest wall. I don't have the normal response.
Beep, beep, beep, pause. I've had this conversation about beeps with my SCA friends and my mind hurtles forward, reaching to remember who reported what. Oh crap, was that beep me? Look around the store, any obvious source? Oh crap. What had they said, my SCA friends? What did a beeping implanted defibrillator give rise to? My idle curiosity about what was beeping had become anxiety and I knew with special SCA certainty that fear was right behind it, then terror, then panic. Strain to listen, strain to figure out the direction. Beep. Crap.

Ironically, the heart races - really not helpful. I'm trying to remember as the fear starts to gallop - was a beeping ICD a precursor to a shock? Was the heart rate too fast? Too slow? Knocked out of useful rhythm? Wait - was it the low battery signal? All those possibilities in just few seconds. Anxiety to panic for SCA people isn't a slow turn. Instead, it feels like that bell at the start of a horse race --- from dead stillness to utter chaos in one stride. Beep, beep, beep, pause.
We learn to stave off the panic before it arrives - quick, quick, use the brain. Tamp down that adrenalin. First things first - regardless of what the beep means, get out of the store. No matter what is going to happen, I don't want it to happen in a convenience store. Beep. A plan, get a plan. Take a breath. Calling 911 seems extreme; maybe instead drive myself to the nearby pseudo-hospital or 15 minutes to the real one. Wait. Drive?????. An exceptionally poor idea. Stop, breathe.
Deep breath. Beep. Get to the car and see.
Sit in the car. Silence. Breathe. More silence. It wasn't me. No beep. Exhale. It wasn't Skippy. Saved again.

After sitting with a few more breaths, to the beach we go. Reminded with a mix of self-exasperation and gratitude that new SCA fear is probably permanent. No matter what, a new fear will turn up and turn up and turn up. Such is an ICD life. Things will beep and create near panic in a nanosecond. They will or will not pass. But as I head to the treasured, tranquilizing ocean, I'm singing a long-forgotten song from my youth. Go ahead, have a listen. Beep, beep, beep.
https://www.youtube.com/watch?v=D4W7oZBhAJg

Skippy and Me

noreply@blogger.com (Marty) — Mon, 21 Apr 2014 21:42:00 +0000

I recently saw Henry the cardiologist for our semi-annual chat. I had a few questions for Henry, one of which was about Pilates and some scary sensations I have gotten in Skippy's neighborhood. Skippy being the ICD, the implanted cardioverter defibrillator, the thing sitting in my chest wired to my heart. Sitting there, laying in wait to shock me to smithereens if the need arises.

I love Pilates; I've been a regular for 7 or 8 months now. But there are a few exercises and positions that I avoid. They scare me - they produce odd sensations in my chest. It feels like something 'funny' in the vicinity of the wires and leads that lace from Skippy into my heart. The wires and leads are Skippy's appendages - sometimes Pilates creates something that feels like pulling on a lead. That sounds relatively benign, but for a Sudden Cardiac Arrest (SCA) survivor with an ICD, it's terrifying.

Of course, SCA is a fear-spawner; it manufacturers fear. Particularly in the first year, life was an onslaught of fears. Skippy arrived with a great deal of baggage. Bit by bit, month by month, you tame the fears one at a time. Time works its magic and now, after Skippy's 4th birthday, a day with a new SCA fear is an anomaly.

But Pilates. In doing Pilates, one stretches in some bizarre positions, pulling this way and that. And the frightening sensation was a pulling - from inside the chest wall. I could envision Skippy's becoming detached from something important and in a flash, there it was - that special, unique, icy SCA terror was back. Nothing quite like it.

So I asked Henry. He told me there were only three things I could not do - gain weight, smoke and resume scuba diving. That I should think of the 'pulling' sensation as akin to muscles being asked to do more than they have done - there may be temporary discomfort and then the muscle reaches a new level of strength. I get that; I understand that picture; I understand sports and muscles -- and I was more than mildly relieved. Yes, I could do everything in Pilates, but more important - one more fear wrestled to the ground.

Then Henry went on to paint a new picture. He said that after 4 years, the ICD (he won't refer to Skippy by name) -- the ICD is no longer just sitting in the chest wall - it has been "incorporated" into my body. Tissue has surrounded it. I'm not sure which word he used as he described it, demonstrating with his hands. It was enmeshed or encased or encapsulated or integrated or something . My body has surrounded Skippy. It's a new, odd, freaky, and ultimately reassuring mental image. I couldn't remember Henry's word so I choose 'embraced'; my tissue and my heart have embraced Skippy.

So there you have it - Skippy and I are one forever. Until death do us part.

A Magic Date

noreply@blogger.com (Marty) — Thu, 12 Sep 2013 01:09:00 +0000

September 5, 2009. A date I will never forget. Until I do. That was the day my heart stopped for no reason at all. In Sudden Cardiac Arrest circles, we/they will refer to the date as "the day I died" or "the day I died the first time" or the less macabre "my re-birthday". For me, it's always been just the day my heart stopped. Sometimes, I'll refer to it as "Skippy's birthday" - Skippy being the implanted defibrillator that came into my life and chest shortly after the whole heart-stopping-thing.

The first anniversary, 2010, was awful. Well, not truly awful - the heart didn't stop again, so it wasn't quite awful. But I had heard so much from my SCA friends about celebrating the day - a whole year with an intact heart. So as the date approached, I manufactured more and more pressure to mark the day in some momentous way. But instead of joy, I was increasingly anxious as the date crept closer. I re-lived the 2009 day over and over and over. Instead of finding joy and celebration, I was scaring myself to a bizarre degree. Like there was a heart fate switch out there somewhere that would make it stop again - on this September 5th. As if it would be an annual event. In the end, I spent the day boating with a good friend. A simple pleasure.

Then in 2011 and 2012, I vowed to let the date simply pass. And I did. No celebration, no anxiety; I knew the countdown; I was aware of it on September 2nd, on the 3rd, on the 4th. But I did nothing to mark it. For me, that seemed the safest route - I think I was determined to make September 5th an ordinary day.

And then 2013. I forgot. On September 10, I realized that the 5th had come and gone. I was so surprised, shocked even - pardon the pun. It was done. I had succeeded. September 5 had been relegated to the ranks of the mundane dates. I was relieved. And a little bit sad.

Such a neurotic; I feel bad that I forgot my SCA birthday. Like I owe Skippy an apology. Or a cake.

Italy's Beauties

noreply@blogger.com (Marty) — Fri, 09 Aug 2013 21:56:00 +0000

I recently had the pleasure of Italy. First a few days in Rome and then cycling through the vineyard-covered hills of the Piemonte region near Turin, a bit west of Milan. At times it was hard work on hot hills, but it was spectacular. As my sister aptly said, it felt like we were riding our bikes through a painting.
(And I'm happy to say that Skippy the implanted defibrillator was quiet and peaceful, even when the hills got taxing. Another first as my Sudden Cardiac Arrest (SCA) 4th birthday looms).

And then there was our cycling group. It included 5 people who are veterans of multiple Ironman triathlons. And my sister and I most assuredly are not. Others brought their own pedals for their own special shoes. And we didn't even really understand that sentence. So mostly we saw these people at meals.

There were a few I genuinely enjoyed; one from Hawaii and a couple from Seattle. The Seattle pair seemed great - smart, interesting, etc - call her Jane and John. She also happened to be pretty and very stylish. She wore 'outfits' while biking, but not biking outfits. She crafted her own look, and she had a "look" each and every day. And turns out, a nascent fashion business on the side. Or expensive hobby. In any event, for Jane, appearance matters, aesthetics matter.

I liked Jane and her husband through much of the trip. One evening before dinner, the group went to visit a wine cellar on a working vineyard. I don't have much curiosity about wine-making, so I sat by the house where the working family lived. It was a beautiful early evening, lovely sitting outside as the sun headed down. The family was ending their separate days; mother feeding the young kids, hanging laundry outside on racks, feeding two large dogs, a couple cats and an adorable litter of kittens. I remember thinking she had probably worked all day and then had to face kids, dinner and laundry. It seems women may have tougher lives than men in rural Italy.

And then we were at dinner; a 'family-style' dinner in a courtyard restaurant, our group at 2 long tables surrounded by local families. I happened to be across from Jane and her husband and for conversation, I asked about the visit to the wine cellar. She responded that it had been almost wonderful, interesting, good wine, that the visit was terrific with just one complaint. She thought the family should have taken in the laundry before our group arrived. That our group was on an expensive vacation and we shouldn't have to see laundry at the vineyard.

I was shocked; speechless in fact. Her husband looked mortified. And then I managed to say that I thought it was just a shame that she didn't have a dryer. Then, because we are adults with well-developed social skills to use on travel with a group of strangers, I asked about the wine.

Beware the pretty ones; they can be marred.

A Choice Day

noreply@blogger.com (Marty) — Sat, 06 Jul 2013 15:33:00 +0000

Skippy the implanted defibrillator and I are off on an adventure; hopefully one that does not include Skippy's actually getting involved. I wrote this post on the long travel day; it started around noon or so and ended I don’t know when. It’s an overnight day with a 7 hour time difference and I don’t bother with that math. But it is a long travel day.

I have logged enough business travel miles that I should be deeply travel-jaded, and in some ways I am. Destinations are fun; most of travel is tedious at best. But amidst all the annoyance of the long travel day – luggage, delays, costs, TSA. Amidst all of that, there is the one thing that I still love. The one thing that apparently will never turn jade.

It’s the actual flying. It’s flight. It’s magnificent, and it never ceases to delight. Most of the time, like all seasoned travelers, I’m an aisle-seat person. Anything to make the day easier. But on this day, my first leg was up the east coast. From NC to Philadelphia. I am not a million-miler and there are huge swaths of earth I have not seen, but I've been to a fair number of places. And there is still not much I enjoy more than flying the east coast on a day like today. On this flight, I always, always, always get a window seat. Always. On the east-facing side of the plane. Picky.

The first bit is dull, but then we reach water. The Bay and then the ocean. We come north up the western side of the Chesapeake, then the eastern shore, then the Atlantic coast around Maryland and Delaware. On a day like this, even South Jersey looks magnificent. Partly cloudy – enough clouds so they somehow make me miss scuba diving on walls, though that’s tough to explain. Enough cloud that there are layers, discernible layers. You are above all clouds, then under some and over others. In an instant. Enough clouds that you can almost feel them. But not so much that it’s a solid blanket.

Days like this it is astonishingly beautiful - the coast stretching below and breathtaking clouds outside. And just partly cloudy enough, partly sunny enough – that the sun reaches through to the tops of the clouds outside the window. So we get that white. That one in a million white. The “can that be real?” white. I always see it as ‘Renoir white”. It turns up in his paintings – as a speck of light reflecting in a small dog’s eye and as a bigger dab in the bottom of the wine glass. Renoir white. Impossibly white.

It was a quick, magic hour and I loved every minute of it.

Small choices. Had I taken an aisle seat, it would have been just another mildly annoying flight, delayed with many loud children. Barely a flight at all, just travel.

A wonderful start to the adventure. A choice day.

Boys, Bars and Boundaries

noreply@blogger.com (Marty) — Sun, 31 Mar 2013 02:07:00 +0000

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

noreply@blogger.com (Marty) — Mon, 04 Feb 2013 02:08:00 +0000

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

noreply@blogger.com (Marty) — Sun, 06 Jan 2013 21:25:00 +0000

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

noreply@blogger.com (Marty) — Sun, 25 Nov 2012 02:36:00 +0000

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)

noreply@blogger.com (Marty) — Tue, 21 Aug 2012 17:08:00 +0000

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

noreply@blogger.com (Marty) — Fri, 20 Jul 2012 02:01:00 +0000

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

noreply@blogger.com (Marty) — Sat, 14 Jul 2012 21:44:00 +0000

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.

Hearts, Neckties and Ferris Wheels

noreply@blogger.com (Marty) — Sat, 07 Jul 2012 22:21:00 +0000

Who wears a necktie on a Ferris Wheel? Long ago Dads did. I saw a photo of a Dad and two sons, probably from the early 60's. Probably before Kennedy was killed. It was black and white - the photo. And the copy was faded and stylized, so detail was lost. But it was a Dad and two sons. They were on a Ferris Wheel. And the Dad wore a necktie.

Was it the end of a workday? Or maybe Sunday after church? Men still wore ties to church back then, I think. This dad has that look - he was a business man or owner of a certain type of shop or a professional - a lawyer, accountant, doctor. He was not a stranger to neckties. Even in this old photo, you could tell he was comfortable in his tie. He might have been uncomfortable without it.

His two sons flanked him. The younger probably 5, the older maybe 8. The older one doesn't want to be there. Probably doesn't want to be hanging around with buttoned-down Dad and surely not with the little brat brother. This older one - you can't see the eyes rolling, but you just know they are. He's bored, the Ferris Wheel is probably small, he wants to get it over with.

The Dad is there, but he's not having much fun, he's not engaged with either boy. His eyes are off in the distance - some high altitude distance. He's got the young one on his lap, but he's not really even holding onto him. There is not a seat-belt or restraint in sight, but this boy is more perched than cradled on his dad's knee. Not like today's Dads. This Dad is fulfilling his obligation to take the two boys on this dumb amusement park ride. He is, after all, a man who wears neckties to a fair. The Ferris Wheel was no doubt foisted upon him by his wife, who may be holding the camera.

And then there is the young one. He is hanging on to the ride's bars for dear life, and loving every single moment of sheer terror. Gleeful terror. Terror with abandon. The young one is staring straight at the camera. He is so excited he may yet jump right out of the car. He can barely contain himself. He cannot believe everyone's feet are off the ground - OFF the ground!! This is over, over, over the top for him. This beats Christmas, and it's summer. He loves being there with the Dad and he loves the thrill of the ride. You can almost hear him across the decades: "look at me, Look at Me, Look at ME!!!". You can see in the photo he's a daredevil already. And not the kind who doesn't know fear - those are the ones who climb Mt. Everest "because it's there". No, this little boy is the other kind of daredevil. The one who feels the fear and the adrenalin that accompanies it and just can't get enough. Already hooked on a thrill. Doomed by the thrill.

The Dad will die young; he'll be unhappy. He'll leave those two boys. The older one grows up to be the white sheep until arrogance gets the better of him. But it's an insipid arrogance. Like Paul McCartney - too interested in making sure he looks good working; not interested enough in excellent work. He drank his own Kool-aid. Insipidly.
And the young one, the little boy. He'll grow up seeking thrills. He'll miss the Dad forever; he'll never comprehend his loss. He'll become alcoholic; he'll be confused why life has so many failures. He won't understand what happened to the thrills. When did adrenalin get overtaken by shakes, hangovers and blackouts? Why can't he get it back? Where the hell did it go?

I still miss him sometimes. I wish I'd known the Dad who wore neckties on Ferris Wheels. And I wish I had the photo to put on this blog.

Photo by Penelopejonze, find her on Flickr http://www.flickr.com/photos/penelopejonze/

SCA Changes Everything - Our Yes and Our No

noreply@blogger.com (Marty) — Tue, 19 Jun 2012 20:04:00 +0000

At first, I thought living through Sudden Cardiac Arrest (SCA) would change nothing. I won't let this change anything. I am still healthy and strong. I am not old, and this -- this --- this ----event ---won't change me. As if one could will this to be true.

Time goes by, the initial shock, terror and horror pass. We come to terms with the fact that by all rights, we should have died that day - over 90% die that day. Then some of us get to come to terms with the joyous but incredible understanding that we had no heart damage and no brain damage - rarity among the rare. We didn't die, our brains and hearts are intact. Again, I think - I will not let this change me. Period. I just won't permit it.

I look back with wonder at how absurd I was. Every one of us who lives through this is utterly, completely changed. I don't have any substantive physical or mental after-effects. Oh, sure, I can't walk through a metal detector, I wonder and worry a little about magnets that seem to have become suddenly ubiquitous. And I was bitter about the ban on scuba diving. But substantively - no physical or mental after-effects.

But nothing is the same. Everything has changed. I don't think there is such a thing as an unchanged SCA survivor. We become seekers - some seek data, some seek a villain to blame, some seek an understanding that will never come, some seek to re-craft our new lives. Pick your poison. Everything is different. I say yes when I used to say no; and I say no when I used to say yes. We are not the same as we were.

I do things I never would have done - ever. I write this blog and I don't care who reads it. I don't care if it's revealing or embarrassing. Five years ago, I never would have considered a public display such as this.

Last weekend I learned how to make paper. I love to write; I love paper and pens and ink. I love fountain pens. I don't make many things; I made a few hundred jobs, I guess. I make some contracts now. But things - I don't make many things. But I made paper for two days. Four years ago, I would have scoffed at the idea. I would have said no to making paper. I am pragmatic by nature - we can buy paper; there is no point to making it. After two days of making paper, I have a few sheets I like and one I love. I don't know exactly what I will do with it, but a fountain pen and some words will be involved.

I made paper. And a man walking down the beach asked me to leave behind my book and walk with him. I said yes. He asked for my number and I said yes. Pre- SCA, I would not have; I would have wanted fingerprints or a mutual friend or some sort of background check, place of employment, license plate - something silly. Now I just say yes.

I say no to things I don't enjoy. Things I would have continued to do out of a sense of obligation. Or out of a desire to avoid feeling guilty. Last year, service on a nonprofit board had become tedious and irritating. Pre-SCA, I would have continued through my term. Not now. I quit mid-term. My self-induced guilt has lost much of its power since the SCA. If it's not fun or meaningful or gratifying or important, I'm out. I received a gift on September 5, 2009 and it's mine to keep.

I say yes when I used to say no. I say no when I used to say yes. SCA changes everything.

The Deep End

noreply@blogger.com (Marty) — Sat, 26 May 2012 16:55:00 +0000

Swimming pools have those stencils around the sides--- "2 ft.", "6 ft", "14 ft". I understand these. If the sign says it's two feet deep, I know not to dive in. Fourteen feet - it's safe to dive. I understand these stencils, these signs.

The mystery is why I sometimes ascribe depth to people when it's not actually there. I have a history of misreading it in men. For a long time, I think I believed that if a man were kind, smart, witty, charming, charismatic and a drinker, then the drinking was the stencil - it pointed to depth. Not to be too hard on myself, but what an idiot. I've been told, by one of them, ironically, that my powers of discernment were less than dazzling.

Of course, we are not swimming pools. None of us has one depth. None of us is always at 2 feet or 14 feet. But some reach for 14 and some stay contentedly or discontentedly in 2. 14 is scarier; the water gets dark; you can drown. Two feet is two feet. One of the simplest and most elegant observations came in Clyde Edgerton's wonderful novel "Raney". One character says "There are three kinds of people in the world: those who talk about themselves, those who talk about other people and those who talk about ideas".

But as people, we wander about on the spectrum. The deepest among us will at times watch American Idol or Real Housewives and talk about themselves or other people, but some 2 feet people never seem to aim for 14. Some can't muster the courage or simply don't see the point; the risk of 14 feet has no obvious reward.

But we are each capable of only what we are capable of. Most of my friends glide easily along the range of depths; we have superficial days and interests and then glide to the relative depth of examined lives. (And I will say that among my Sudden Cardiac Arrest survivor friends, I have yet to meet one who is not in the deep. We are all seekers; our hearts stopped without warning and we didn't die. It gives one pause).

My life would be simpler if the shallow end dwellers could wear those stencils. Since I stink at sorting out which men are which - particularly among my ridiculously beloved heavy drinkers. As Hayes Carl put it "you're not a poet, you're a drunk with a pen". Or a lens. Or a cab. A drunk with a pen.

There was a day with one of them. We were talking about why he had stayed so long in a relationship that had been miserable for years. And he said "She cooked, she cleaned, she drank". I was speechless. Could someone actually be shallow enough that those were the criteria for a relationship??? "She cooked, she cleaned, she drank". I understood she cooked a lot, cleaned a lot and drank a lot. Enabling him not to cook, never to clean and of course, to drink with abandon. True to form, I got it wrong. Instead of admitting that my friend was in fact that shallow, I, ever the idiot, ascribed depth even to that. He knew the absurdity of the rationale, the criteria -- or he would never have said it. At least not to me. Me, ever the idiot. The reality is that he saw it that way because he forces himself to live in two feet. He is terrified to see beyond 2 feet; he drinks to make sure he can stay in 2 feet. Everything else is simply too uncomfortable to manage sober. Idiot.

I need the stencils. I sometimes give too much credit; sometimes people give themselves too little.

Un-Friend, De-Friend, the Shortness of It All

noreply@blogger.com (Marty) — Sat, 12 May 2012 18:57:00 +0000

I can't quite keep it straight what Facebook (FB) calls it - unfriending, defriending. Either way, this is serious business, unfriending. I did it this morning, for the first time. While I had good reason (in the simple space that is my own mind), it still made me uncomfortable. I don't think I'm much of a fan of that level of unbalanced, unilateral power. When I had the big corporate job, I thought that the decisions about hiring people were only marginally better than the firing ones. That level of solo power has never been something I lusted after. (Though I will admit that I love that same level of power over things - as I contemplate re-doing my aging kitchen, I am in love with the reality that I need discuss the myriad of choices only with myself; I do not have to cope with someone else's opinions about counters, edges, cabinets, drawers, whether one can actually "need" a double-oven (yes). This is a fiefdom where I relish the power).

Unbalanced power re: people, not so much. But I defriended someone. Truth be told, we are not actual friends; we were merely FB friends, and we had been childhood friends. In this, the first 10 years of FB's life, I think we are all still sorting out how to deal with it; what the etiquette is, the right 'tone', etc. It's new. The rules are being written in pencil.

So the defriend. This is either a hard, embarrassing week in North Carolina or a relief, depending on your views on gay marriage. I understand that some yet remain 'squeamish'; I remember being 'squeamish' when first gaining a consciousness about it all. I remember trying to sort out if there were lines that society shouldn't cross, etc. But all that was a while ago for me; so it confuses me - genuinely and without malice - it confuses me how people with loved ones, friends, family members who are gay and have the simple wish to marry - how does it feel acceptable to deny that? (I assume, perhaps incorrectly, that is now all of us - don't we all have loved ones and family members who are openly gay?) But apparently it still feels acceptable to deny them marriage rights, at least to a majority of North Carolina voters this week. And while I'm comforted with the certainty that this is the last gasp for the anti-gay marriage crowd, that it will die a natural death in 10-15 years, I doubt that is much comfort to our gay loved ones who wish to marry now or who are simply tired of their trampled civil rights.

So the day after the dark election, I posted a link to a quite irreverent Todd Snider song that mightily skewers the right, on this and other issues. And somewhat less mightily skewers the left. That's one reason I like him - multi-directional skewering.
So this childhood friend, let's call her Jane; she wrote on my wall, on my Todd Snider link. Something to the effect that this song wrongly maligned and mocked Christians. Well, maybe, but it's my wall. I waited a day, then sent Jane a private message suggesting we respect one another's FB walls as our own space. I aimed for gracious. I suggested that while we had been childhood pals, our roads were clearly very different, and that perhaps our common ground was that our respective (late) mothers had been fast friends who had been wonderfully kind to one another in their last years.
And that we could avoid falling prey to the rot that passes for 'discourse' these days; that we would let pass without rebuke or comment what we each write on our own FB walls. My mom would have been proud; there was not a single divisive word in that message; it was a plea for civility and etiquette and grace across our great divide.

But then ---- nothing. I had hoped she'd remove her offending comment from my wall. Nothing. This is the kind of behavior from loudly self-proclaiming "Christians" that makes so many people, including me, uneasy and skeptical at best. I'm pretty sure that the actual Christ would accept an olive branch and a hope for higher ground.

But --- nothing. So I deleted her comment and then found the 'unfriend' button and used it.
As we all know - life is short. If you've survived Sudden Cardiac Arrest (SCA), you are so cognizant, every single day, that it is shockingly short. Gone in a second short; blink of a flipping eye short. I've said before SCA changes everything - and one thing for sure: I won't spend much time in activities that aren't pleasant or gratifying or meaningful in some way - and that includes pointless debate with 'moralists' who are guarding some gates and excluding anyone who makes them uncomfortable.

Comfort is not the only barometer of morality. Actually, it's not even in the running.

And my un-friend's name is not Jane. Jane was the name of her lovely, kind, gracious mother.

I Can Fix That

noreply@blogger.com (Marty) — Sat, 05 May 2012 23:28:00 +0000

Every now and then, I forget my utter lack of ability to assemble anything mechanical. I have a shot if it comes with true instructions (to me, that means that it comes with words of instruction that go something like: First do A with tool B, then do C, and so on). What I don't mean is anything that comes with "instructions" that consist entirely of a drawing. I could look at a drawing like that for days, for weeks, and never ever have any sense of how one begins or ends. Never. I know this; I long ago accepted this limitation. I know that if I try to assemble it without help, failure is certain. Certain and absolute. The only question is whom to call on for help.

But every now and then, I forget. And I buy something that promises "Simple assembly required". Opening the box, finding only that drawing and perhaps one incomprehensible tool - I remember. I can't do this. Not alone.

For decades, I believed I could fix almost anything - "Some fixing required" was not the same to me as "Some assembly required". My purpose on this earth was to fix, find a better way, see a new chance. People, situations, work, husband, my own demon - I could fix that. All it would take was brain power, determination, courage, skills, persistence, creativity, hard work, maybe a little luck. But everything out there could be fixed. I believed it - and acted like it - for decades.

It wasn't pride. It was merely my purpose. I was here to fix, to change, to move to new ground. I was certain of it. For decade after decade. There was success and then there were the things I hadn't yet figured out how to fix. I didn't see any of it as failure - just 'not yet success'. All I had to do was work harder, be smarter, more creative, braver, more daring --- and it would be fixed or surpassed. As they say in the mother country --- Idjit.

One does not fix an alcoholic - it only took me about 7 or 8 Alanon years for that one. And that's only the first.... now the list of what I cannot fix seems endless. Husband, marriage, son, my demon, anyone else's demons. I can go to Law School at 50 and learn things no 50 year old brain should even attempt to learn. Work - yes. People - no. Me - no. Endless list. Hearts - we cannot fix hearts.

I can't fix or even really understand a buena man, I can't fix my demons, I cannot fix a heart. I can accept an implanted defibrillator to restart a heart that quits, but that's not quite fixing it, is it? This week, a 26 year old world champion swimmer from Norway died of Sudden Cardiac Arrest (SCA) after a workout. A seemingly perfectly healthy world-class athlete simply laid down one moment and died. His heart just up and stopped. Inexplicably but inexorably. That crap is not fixable. 95% die that day.

I have finally, after 5+ decades on this earth --- I have finally accepted that I can fix nothing. My ability to fix any of it is exactly on par with my ability to assemble the damn bookcases I bought that came with only a diagram. The only question is whom to ask for help.

Stuck in the Why

noreply@blogger.com (Marty) — Tue, 10 Apr 2012 00:13:00 +0000

There are mysteries and there are puzzles and they're not the same thing. The difference is information: with a mystery, we have all the information we need; what remains is our pondering, our musings, analysis, effort, passage of time, insight, but not more data. A puzzle is different; we can't answer the question until we get some more information. With that one more bit of information, the solution is revealed. (Thank Malcolm Gladwell for the distinction).

I remember my first significant mystery. I didn't like it. Or maybe it was a puzzle. Or perhaps just an eternally unsolvable mystery. It was grade school - the nuns presented us with the Trinity: Father, Son, Holy Spirit (well, it was Holy Ghost back then). I was probably around 8 years old. I was raised in a home of "thou shalt question everything", so I said the obvious "I don't understand". My literal nature goes back a long way, and the Trinity did not compute. I imagine the nun probably simply repeated herself - it is three and it is one. I asked again and got the ultimate nun-response: "It is a Divine Mystery". That may have tided me over for a bit, but not long. Divine Mystery? I can hear even my child-self saying 'well, that covers an awful lot of ground, now doesn't it, Sister Whoever? They used the image of a shamrock - it's three and it's one. As if that would make it believable. I don't think I spent much time trying to solve that one, and I never quite accepted it as true. The nuns see a mystery; I see myth.

Sometimes I get stuck in "why?" and can't find my way out. Sometimes I still can't tell if the question, the dilemma - is a mystery or is it a puzzle? Do I need to get more information or just try to unravel the facts I have? Or worse yet - is it unsolvable?

Why did my heart stop? Why didn't yours? If I knew the answer to that, could I tell if mine is going to stop again? Why did I get to the ER in time that day? Will the same instinct kick in next time? Or does Skippy the implanted defibrillator make that instinct superfluous?

Why do people do what they do? I waste so much time acting as if the questions were puzzles. What makes a kind person behave cruelly? Why do I continue to care about something I should not care about? If I can accept a heart that stops, how can you yield to a lesser fear? Why do all of us engage in destructive behavior? I'm close to concluding - as my 8 year old self did -- screw it. Some things are un-knowable. Maybe Sister Mary Whoever had it right ---- Divine Mystery indeed.

The photo is Rich's Inlet. Mystery surrounds it.

The Things We Name

noreply@blogger.com (Marty) — Fri, 23 Mar 2012 23:17:00 +0000

We name hurricanes; we do not name tornadoes. Many of us, if not most of us, name our implanted defibrillators. Their technical and proper name is implantable cardioverter-defibrillator (ICD). Sigh. We lighten that up a bit.
I used to think we named hurricanes because each is with us a relatively long time; we watch their development from tropical depression to storm to adulthood. But if it were just for keeping track, we could simply number them each year. We name them instead; I think we have our reasons.

I think it's essentially the same reason we name our ICD's - to anthropomorphize them, to de-mystify them, and mostly to dis-empower them. We want to see the ICD's as pets, as family members --- as anything but what they are. Anything but some foreign object sitting there with wires into my heart. Wires that will 'defibrillate' if my heart stops beating again. Translation = shock the crap out of me.

That first day after the Sudden Cardiac Arrest (SCA), it is hard, hard, hard to digest this whole, new story. To process it into something we can live with without being breathlessly terrified. (I wish I could say I was proud of how I worked through it, but I believe I lacked grace.) When I came to and they told me I had SCA, that my heart had stopped and that I was lucky to be alive, that I had gotten three shocks with the big-boy defibrillator paddles to restart it --- when they told me this, I think I gracelessly said something like "What the F are you talking about? Are you in the right room?"

We SCA survivors all grapple with it - "what do you mean my heart just stopped beating? And had to be shocked back? Did I die? Am I going to die again now?". Then we hear the statistics - 95% + of people who have SCA die that day. We can't breathe with that one. We have tests, scans, bad food, terrified visitors. I had so many questions that I couldn't formulate a single question. I didn't understand why I didn't feel sick. Those 4 days in the hospital are a haze. I remember pieces, and I'm sure I have the sequence wrong. Purely one foot in front of the other. Friday you are a normal healthy person; Saturday your heart stops for no reason. And somehow you survive that. You slog through that. One beat at a time.

I gave consent for the ICD I had never heard of before; I gave consent to this thing going into my chest and into my heart. It's in there forever. It may or may not shock the stuffing out of me one day.
But on the night it was implanted, all I wanted - and I wanted it desperately -- all I wanted was for this "it" not to be an "it". This was a part of my life; I had a new body part. I needed "it" to be a he or a she or a me. The next morning, I began searching for names --- I wanted a benign name. Something I could handle, something that might make me smile. Something that might make other people laugh. Something I could live with. Something that wouldn't terrify me. And Skippy was born. Skippy doesn't sound like a scary ICD; Skippy sounds like a puppy. Skippy will help; Skippy won't ruin me. Skippy will be like Lassie. Sort of. He is my dis-empowered defibrillator.

I have since learned that many, many people feel this same need to humanize their ICD. I have met (or e-met) people who have come up with an astonishing array of names: Timex, Elizabeth, Popper --- and my all time favorite - Trigger. I love these people, and I love the names.

I've got a roommate. He lives in my chest wall. Tornadoes are always destructive. Hurricanes - sometimes they destroy and sometimes they don't. The named storms are not always ruinous.

Mistletoe

noreply@blogger.com (Marty) — Thu, 15 Mar 2012 03:15:00 +0000

I learned a number of things from a driver, and virtually nothing about driving. One involved cigarettes and gasoline, but the best may have been the mistletoe. I'm not sure where I had thought mistletoe came from - I probably assumed it grew on mistletoe trees or mistletoe bulbs or mistletoe shrubs. I have a shocking lack of curiosity about such things so am not surprised I had never asked anyone or looked it up. And I had never noticed those odd ball-like things in winter trees - such is life among the amazingly unobservant.

But I'm educable; I learned what mistletoe was and then more surprisingly, how people retrieve it. At least here in the south, they shoot it down. Seriously. With guns.

So mistletoe is a hemi-parasite. Our cultural icon of Christmas sweethearts - parasitic. It lives off its host. I was shocked to learn that those weird little balls in the trees were mistletoe; the driver was more impressed with the shooting of it. Figures.

I still wouldn't toss a lit cigarette into a gasoline puddle, no matter what the redneck on YouTube says. Regardless of his demonstration, or semi-scientific assurances. Nor would I shoot at mistletoe. But it's been quite a while since I learned that's where mistletoe comes from; I long ago quit trying to understand the driver. Hemi-parasitic bare-tree balls of Christmas kissing icons that are waiting for their end-by-firearm - they are ever so much easier to understand.

Wrong

noreply@blogger.com (Marty) — Sun, 04 Mar 2012 04:05:00 +0000

Some things are simply not right. What is right is that it’s Spring, though the weather will be on and off for a bit yet. It’s Spring because the Phillies are playing in Clearwater and college baseball is underway. What’s right is the ball field grass is green; it gradually becomes somehow impossibly greener under the lights; my heart is still beating and Skippy the implanted defibrillator continues to be quiet.

And then there’s what’s wrong. Pales in comparison to the harbingers of Spring, heartbeats and Skippy, but still just wrong.

Designated Hitters. Pitchers should hit. As someone said, using a DH is like sending someone else in to a basketball game to shoot free throws. Wrong.

My thirty-something year old friend who lives with the aftermath of Sudden Cardiac Arrest (SCA) and her version of Skippy. Too young. Not right. Ever.

I get annoyed when I have to explain that I didn’t have a “Massive heart attack”. Somehow, I prefer my reality of the far less common and more dramatic SCA, though that is mighty small of me. After all, before 9/5/09, I could not credibly have described the difference between a heart attack and SCA. I’m wrong to get cranky about it, but I can’t seem to help myself. My cholesterol was never high, thank you very much. Small. Small.

Aluminum bats in college are wrong. Actually, I think they’re wrong in high school and probably Little League as well. The sound of a baseball bat should be a crack, not a ping.

Mitt Romney in worn, broken-in jeans. Very high ick factor. And I don’t believe it. Where is he getting them?

A favorite photo is ever so slightly out of focus. There’s a new camera just developed (lytros) that will fix that, but too late for my shot.

The wrong man calls. Of course, the 'right' man is also a wrong man, but that's just me. I was thinking of writing a country song "He was the answer to the wrong question". Another day.....

Writing a post like this after my extraordinary good fortune is wrong; my heart stopped and I didn’t die. This uncharacteristic whining reminds me of one of my favorite birthday cards ever created.

- - On the cover are two women. One grants the other a single wish and the birthday girl says "Thinner thighs". The wish-granter rages - really, all the problems in the world and that is what you selfishly ask for - thinner thighs??????

- - And inside the card, the birthday girl responds. "Okay, okay. Thinner thighs for everyone".

And there you have it.

P. S. The photo is from jupiterimages.com; isn't it perfect?

Worry - Zero to Sixty

noreply@blogger.com (Marty) — Mon, 20 Feb 2012 01:58:00 +0000

Sudden Cardiac Arrest (SCA) changes everything. Even how we worry. Like they measure acceleration in cars, we SCA survivors can go from zero anxiety to catastrophe in seconds flat. Sometimes, I think I have forgotten how to worry "in between", in moderation. It is worry-free or it is the Apocalypse. Or the SCA version of Apocalypse - hearts stopping without warning or implanted defibrillators (ICD's) shocking the crap out of us, also without warning.

I remind myself almost daily of Mark Twain's admonition that 90% of what he worried about most in his life never actually happened; I try to use his insight and wit to moderate the fear that accompanies post- SCA worry, but I fail more often than I like to admit.

Worrying in the post-SCA life is like the anxiety one feels in the first ragged months after death of a loved one. Particularly in our youth, before we become skilled at grief. (never mastery, of course, but there are some skills to be had there). You know, when you get a late night phone call before the loved one's death, you may have a moment's disorientation, a spot of worry, more spots of annoyance at the interruption, the thought "this better be good". Then, in the aftermath of the loved one's death, we are so acutely aware that it's possible that someone we love will die; that our people can actually die. We hear the late night call, and the first thought is someone's death. In my experience, happily, that level of worry dissipates as the months and then years pass after the loved one's death.

But now I think I may have to accept that the post-SCA zero-to-catastrophe worry is here to stay. It's been a couple years, and it has not changed. When I have a sensation in my chest (or really, almost anywhere), my first thought - icy, icy thought - is that it's the ICD and it's going to fire. Or if the sensation is more of a sensitivity, my first thought - more iciness, is that something is wrong, either with my ICD or with the heart. (there are stories published seemingly constantly about quality issues with ICD's. I skip most of them).

I have a "blog friend" in the Netherlands; I love hers - "Thoughts of Wonder". (her link: www.motherofwonder.blogspot.com). She is younger than I am, is raising young children, and has no business having to deal with this SCA nonsense. Not that any of us should, but certainly not a young mom in her early 30's. It is even more wrong.

So my friend, Marije, put up a new post "Not So Lovely Days". A normal person, a pre-SCA me, would have thought she simply had a bad day. But no, this is post-SCA and it's zero to sixty. Me and Skippy the defibrillator immediately thought she had arrested again. Or had a defibrillator shock. Or something else horrible. Just from reading those four words "Not So Lovely Days". My worry is misplaced, in keeping with Mark Twain's 90% maxim - I'm happy to say Marije was merely dealing with a household of people large and small who are suffering through colds or flu. It only takes a minute; the anxiety disappears. But I know it'll be back on another day; I know it's become a fixture.

So there it is again. Our hearts don't work like normal people hearts; something has gone off the rails there, whether we want to admit it or not. And we no longer worry like normal people. Zero to 60 in nothing flat. I need a slower car. I'm gonna get me a slower car.

(the photo above is my first car. How it got to the front lawn of the apartment building and why I left it there - well, that is a long, old story for another day).

Whales, NatGeo, Me

noreply@blogger.com (Marty) — Thu, 16 Feb 2012 22:51:00 +0000

I saw whales last week. Many, many, many whales. Grey ones (moms and babies), humpbacks, one gigantic blue whale. And Orcas. And birds I'd never heard of. Even the birds I was familiar with seemed more magnificent. I was in the Sea of Cortez on a National Geographic ship. This is a nerd cruise, not a Carnival Cruise. (If you ever see me on a Carnival-type cruise, you'll know I am being punished for doing something horrid).

This boat housed 55 passengers, a smallish staff/crew, augmented by PhD types on board to educate and help us. Biologists, a botanist, a couple professional photographers. There was a small contingent of Yale alums and they brought along their very own academic; I believe his area is biology of fish evolution. Seriously. He tried to tell a joke one night about the expression "drink like a fish"; one of those excruciatingly awkward moments where someone realizes that outside his normal circle, he really just is not a funny man. Interesting, yes. Funny - no.

So no, there were no musical acts made up of near would-be has-been almost stars. Well, one evening a couple local fishermen with guitars came on board and played a bit. Seriously. There was no casino and no bingo - instead, we had lectures on wetlands, whale migration, John Steinbeck's book "A Log of Sea of Cortez" (by someone who had actually known Steinbeck). Like I said - this was nerd heaven.

The area is spectacular; the colors are beautiful, the air is unbroken. Mountains, sand dunes, water, cacti - somehow they look like they are created with pastels. I don't remember ever wishing I could paint, but on the first morning, watching the sun come up, I had that wish.

One day, as it turned towards evening, I stopped in the lounge/bar to grab my afternoon cup of tea before heading to the deck for an hour with the Steve Jobs biography --- and I realized - on a 'normal' cruise, at 6PM, the bar would be full of people heading into, or deep into, cocktail hour. Here, on this boat, the lounge had maybe 10 people, all spread out in ones and twos, each reading a book. Nerd heaven.

I learned that I loved seeing the migration and calving of the greys just as much as I thought I would. I learned I love sleeping on a boat. Some people got very ill our first two sort-of rough nights, but I loved it. I love dawn on a boat. I saw my first "green flash". I snorkeled with sea lions (the adults can be big and scary, the babies are like puppies - bumping your head, your butt, chewing on your fins -- you laugh right through the snorkel).
Mexico is still Mexico. Navigational markers made out of trash line an important channel. Wonderful meals of local fish I have never heard of. And the country is still a poor, dirty mess.

I had never done "group travel" before; it's for people who like their travel safe and controlled. There is little risk of things going seriously off the rails. (Unlike my normal style - two sisters hanging out at the Moscow train station at midnight to catch the overnight train to St. Petersburg... a little nervewracking, but fun. We like risk).

Oh, and I love the airport scanners. We don't have them yet in little Wilmington, NC, but in LA, I get to breeze right through. Skippy the implanted defibrillator (ICD) won't go through a metal detector, so most travel still involves the charming TSA pat-down. But not in big, shiny LAX - I think we with ICD's may be the only people who relish those scanners, but we do.

I loved the trip. The next travel will probably be back to some scary sister trip (I'm trying to talk one of them into going to Israel). But this was wonderful. A lifelong dream - waking up surrounded by grey whales. Whale after whale after whale; inches away.

Life is short.

Annoying Attribution: Who Gets Credit for Surviving SCA?

noreply@blogger.com (Marty) — Sun, 29 Jan 2012 16:06:00 +0000

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/