Readers

I took a breath a couple weeks ago and invited two friends to read this blog. Up until then, only one sister and some people at the Sudden Cardiac Arrest group knew of its existence. I didn't quite get the reaction I was expecting, though I'm not exactly sure what my expectation was.

One said "it's sad" and " I knew this was a bigger deal than you had let on". Well, yeah - arrest is arrest. Hard to sweep it under the rug. But I really didn't/don't think it's sad, though it saddens me to hear that.

The other said "perhaps you should see a mental health professional". Geez - I thought I was handling this pretty well; processing, observing myself, grateful, avoiding a victim persona, working through it with aplomb and some humor, admittedly a bit dark here and there.

Moral of story - no more such invitations. Maybe more jokes.

Here's one I like, for no reason:

An eight year old was asked "How can you tell if two people are married"?.

Response: "I guess you could try to figure out if they are yelling at the same kid".

Untimely v "Timely" Death?

We each encounter deaths that we all refer to as "untimely" or "premature" - what makes it so? And why does it matter?

It seems that a "timely" or non-premature death is one that doesn't have much emotional impact outside the circle of loved ones. Inside that circle, it's debatable whether one type of death is better/worse than any other; it's always a shock, one is never 'ready' and the ensuing void is palpable and brutal.

But "untimely" or premature deaths carry emotional punch that extends beyond that circle. Most if not all of us have a visceral reaction to hearing of the death of a child or young adult.

So where is the line? When are we "supposed" to die? If it's by the numbers, then anything younger than the average life expectancy is premature. Is it degrees by age?

And then there is us --- here "us" is my club; people who survived something against great odds. By the numbers, I certainly should not be ringing in 2010. With my 'event' the survival rate is 2% and it's not driven by clinical risk factors --- it's geography. Where are you when it happens?

So as I prepare to say farewell to 2009, and not a fond farewell at that, I wonder -- by the numbers, I should not be here. But I have had high risk experiences in my life before this event and even a couple near-death experiences. (both scuba diving). After those events, I knew I was lucky, I knew I had survived something that could easily have ended differently, but they were both so different. Why? Is it the 2%??

Probably it's that this event, this cardiac arrest, was not precipitated by risky activity on my part. Scuba diving is risky, heading down to 130' in Belize's Blue Hole is risky --- but the cause of that problem was not the Blue Hole, it was not 130', it was nothing I or my buddy did --- it was pure equipment failure. (Yes, I had properly serviced the equipment, etc.). Somehow even though that event was not predictable, it was less threatening as time passed than this cardiac arrest.

This is a rambling post and not well written. Happily, I can edit tomorrow with a clearer head. My central question is about when "should" we die? When is it OK for us to die? When we engage in high risk behavior? When we hit the average life-expectancy number? Ever?

And of course, for this pragmatist, why does the question matter? I think that once you face mortality this way... you have to do some work to put it in its place, to not have it center stage each and every day. Maybe the difference between this event and the scuba events was, to quote the eloquent and gracious Elizabeth Edwards "I now know what will kill me". Maybe I know that and maybe I don't. Cancer of her type is a progressive illness, on a path with twists and turns to be sure, but a path nonetheless. My case has no path. It's a bimodal situation; it will happen again or it won't - ever. And I can find nothing to predict that.

maybe I'll edit this post and maybe I'll delete it.

Next Year's Christmas Card

I finally sent out my holiday cards today; yes, it's a little late. Not TOO late, I hope; they will get there before 12/25, but they will be arriving on close to the last train, to be sure. But of course, this year, I have a world-class excuse ---- that heart stopping thing buys you a lot of leeway....

I seem to get more "photo" holiday cards each year; where someone or other is posed in front of a tree or with a red/green getup of some sort - something festive. (I understand why people do it, and I like the photos, but it bugs me I can't stand the cards UP in a big grouping.... Oh my God, I am turning into Andy Rooney).

Back to the posting here ----- I have never made one of those cards, but I thought about it seriously this year for the first time. Well, probably not seriously. Well, I thought about it for around three minutes. I think I have an idea that could be great or could be awful, but it's a bad idea if it doesn't come to you until late in the day on December 18. Even with the flexibility brought to us by digital photography, that's just a wee bit late in the game for any idea except "find cards, address them, jot quick note, find stamps and run to the post office".

But here's the idea. A card from Skippy and me - with photo. Skippy, of course, is my implanted defibrillator. I am pretty sure I can't get an actual photo of Skippy himself/itself, so I'll have to substitute a "reasonable fascimilie" - perhaps the Medtronic folks would oblige. So I could dress Skippy up with me - some sort of defibrillator-appropriate matching outfits....

Maybe I could even pen one of those dreaded "family newsletters"; you know, something along the lines of : Marty took up photography this year and has learned Photoshop. In March, Skippy fired for the very first time; we weren't necessarily looking forward to it, but we are so proud that he meets his goals for re-starting flopping-around hearts. OR ...... In July, Skippy and Marty went snorkeling (we are still in negotiations with the Cardiologist about scuba diving), and Skippy just outdid himself - -- he stayed calm and quiet and is showing no signs of rust. We are just so proud....

This idea could use a little work, but it could have great comic potential. Or it could just be dumber than dirt.

An annoyance today - 2nd Edition

I don't think I have written much about annoyances; it seems it's been bigger topics - either joys or fears...

But today, I have an annoyance to get off my chest, no pun intended. I sometimes visit a site for "survivors" of SCA; it is somewhat interesting and I found it very reassuring in the first days after the Sudden Cardiac Arrest - just the comfort of knowing others live through this. Reminded me of my earliest days in Alanon (how could these people be so HAPPY??).

On SCAA today, I read a post I nearly responded to - it was from a wife who commented that she believed the family members have a more difficult experience to deal with than the survivor. Seriously??? While I understand that we all view the world from our own seats, this was difficult for me to picture..... OK, i'll grant you that in the moments of the SCA itself, the horribly frantic medical intervention, the defibrillator paddles, the initial moments of not knowing if we would survive, suffer brain damage, etc. - I'll grant you, that is tougher for the family members and friends, because of course, we don't actually remember any of that. Losing consciousness has its benefits.

But after.... after.... sorry to all the wives, husbands, partners, sisters, brothers, children -- after that, I think the "survivor" takes the unfortunate prize. For SCA cases like mine, we have devices in our chest walls that may or may not "fire" knocking us on our asses, may or may not "restart" our hearts that have stopped or flopped into unproductive non-rhythms --- We live a new life. We now have a new boarder in our lives ----- our mortality sits right here with us each and every day. Yes, I know, a normal maturation process is an understanding and acceptance of our mortality, but trust me - this is different. My mortality has breakfast with me every day, drives the car with me everywhere I go, and beds down with me each and every night.

I am sure the posting wife meant no harm, she is probably an enormously empathetic spouse, but it really rubbed me the wrong way.

I admit I feel a little like a child having a tantrum - NO - this is MY SCA! Your heart didn't stop.....

Things I miss

I was musing whilst on the elliptical machine.... It's mid-December and I really don't care much for the holiday season anymore. I used to, but have not for a number of years. Another story for another day.

But I was thinking about what is different these days. I had one of those flashes of terror today. Probably because the elliptical was at rehab and I could hear ambulance sirens and even the occasional helicoptor coming to the port (when I was inpatient a few months back, I tried to figure out whether a given coptor was dropping off or picking up - this is what we do to pass time...).

Back to what I miss - that flash of terror was about Sudden Cardiac Arrest - did that actually happen to me??!!! There is a gap between the things that happened that day and what I remember happening. And I'll be honest; I haven't been eager to fill in that gap. But I was in one of those ambulances for transport between Hospital A and Hospital B - and I wondered, on my elliptical today, was the siren on? That's when the terror wave passed over me. Then I realized that these waves of terror are becoming like the occasional cigarette cravings we get when we first quit - it can be a strong, vivid craving, but we are confident nonetheless that it will pass without doing harm.

Even so, I miss the innocence of not having that terror of SCA. I think mostly we pass through our routine lives without any moments of sudden, real terror. Unless you get held up or mugged or caught in a hurricane - we don't have much terror. And I would like my moments of terror to go away again. I could live without them.

What else do I miss?

- the two sides of my chest feeling the same. Now, there is a 'bulge' in one side where the defibrillator Skippy lives. I fear a mammogram and am secretly, guiltily relieved that the guidelines may change to every other year......I miss not thinking like that.

- I miss not having foreign things in my body. Yes, I know, I am supposed to feel relieved and reassured that Skippy is in there, but still - I'd rather not. And there is a new George Clooney movie out where he, the seasoned business traveler, is being instructive with a younger colleague - on the subject of getting through security - he advises: never line up behind the elderly, their bodies are LITTERED with metal. I am not elderly, but I am getting littered and I miss being un-littered with metal (although, truth be told, there is metal in a knee as well).

- I miss riding my bike without a helmet. Yes, yes, I know - the helmet is prudent but now it is "doctor's orders" - me being me, I always wear the helmet. Ah, the sensation of wind blowing through the helmet plastic.

- I miss driving fast on a highway. I don't think I will ever again drive 80. Not that I should anyway, but ....

- I miss scuba diving without the fear that Skippy will fail or Skippy will fire without needing to - or I guess that he will fire WITH needing to. I can't say worry-free diving b/c I always worried a little.

- And here is the weird one - I miss my driver. I don't miss being unable to drive, but I miss DD (Driver Dude). His type of big black truck is such a common vehicle here in Coastal Carolina; I seem to see them everywhere. His is extremely distinctive from the front and pretty distinctive from the rear --- so my disappointment that it's not him is quick and complete. This has taken me by surprise, the missing of DD.

Mostly I miss the "before" life. Life without this worry, this reality, these facts I don't much care for.

Getting the life back - one drive at a time

Another milestone!

One of the most inconvenient things about the SCA (aside from the heart stopping thing) was that I was not permitted to drive for 90 days. Me being me, I was utterly compliant. I got behind the wheel of my car one day to put it in the garage (from the driveway).

It is trying, dependence. I hired a driver for appointments and some errands, but am just too cheap to have engaged him for things like "take me to the beach and watch me walk there for 30 minutes". I was lucky to have a pretty steady stream of visitors who were very generous with their time, but still ---- I also relied heavily on my new friends (I had only lived in Wilmington NC for 2 1/2 months when the SCA happened) --- I went anywhere someone would take me. And happily, I live in an area that is not just conducive to bike-riding, it is spectacular.

All that said, it is still so difficult to just not be able to go where you want to go when you want to go. And to go NOWHERE alone. Saturday, my sentence was up and I drove, drove, drove all day. I laughed with a friend that night that it was the first time I got into a car in 3 months without having to say "Hello".

Having spontaneity back and independence back are so liberating. It is joyous and marks yet another huge step in getting my life back. Or crafting my new life, as the case may be. (In the middle of all this, I ended a very long term relationship with the gentleman in my life - he has his demons who sadly seem to have won out; I can't live with those demons, so poof! he is now out of my life --- that process took months, so it is a huge relief to have that done as well).

I am so grateful for every one of these steps - from having survived the SCA against the 98% odds to regaining the exercise level - to even getting the MD to OK some scuba --- and now - driving . Gratitude is a powerful word, but it falls short here.

thanksgiving

Thanksgiving. Wow. The Sudden Cardiac Arrest was 9/5/09 and my birthday is tomorrow (11/25). They say you should begin to celebrate your SCA date as your 'second birthday', and I fully understand that. Beats the hell out of the alternative....

I have a new favorite SCA story. I was trying to gather as much information as I could on defibrillators' firing. And you find the gamut - people whose devices have never fired, one guy who has lived through over 50 firings (I admit I clicked off his post as quickly as i could). We want some reassurance that either it won't happen or we will survive it if it does. My new favorite:

- A woman was at a party and had just finished a dance. She had not over-exerted herself, but was on her way into the house for some water. She was about to open the glass door and saw a dear friend about to open it for her from the other side. And Bam - the defibrillator fired. Her first thought was "Oh my God, my friend has shot me!". We don't know quite why this is so funny, but it is. She went on to say that she did not lose consciousness (wonderful to hear), she did not fall to the ground and was able to maintain her balance (really wonderful to hear), it only lasted a few seconds (whew!), BUT she did pee. (Yikes, but good to know!).

I told this story to a friend who began to critique what passes for humor in this zone. And I chided him - we have to look really really far and wide to find SCA humor and we CANNOT be picky about what we find.

I love the woman for posting the story, and I love the story.

Happy day-before-the-birthday. The "natural" birthday.

Naming our implanted devices

I have named my defibrillator "Skippy" - little tiny dude with little tiny paddles ready to squeak "clear" as needed. Someone suggested I name him something more profound or dramatic like Phoenix from the ashes. I said I had plenty of drama around all this without that type of statement. i was looking for something a little more friendly or lighthearted (no pun intended).

Then i posted to SCA - the online community for Sudden Cardiac Arrest - and yes, many people name their devices. We anthropomorphize to humanize it all or make it seem somewhat more gentle, I suppose.

My favorites from my like-hearted souls - one inexplicably calls hers "Eleanor" but my favorite of all - Trigger. Not sure why I like it so much but I do

Trigger and Skippy - telling.

Gratitude remembered

WEll, happy to say I finished the self-pity reflected in the last post.

I spoke (or e-spoke) with a Richmond friend who works for the Medical Examiners office. She knows all about SCA, they see it all the time in their office. But of course, those folks have no setbacks, no depression, no disappointments.

No heart beats.

I am unbelievably lucky to be here. A setback is just a setback. I still have a heartbeat....

Setbacks

Setbacks are tough; I'm not ready for them.

I was feeling pretty good about my coping skills; I knew the return to full strength (exercising, driving, golf, etc.) would take time. I accepted that. I got the walking up to around 30-35 minutes - not fast, but better than a stroll. And I rode my bike as far as my office (2 1/2 miles or so) - again, not fast, but it felt so wonderful to have even that independence . (Can't drive for 62 more days due to having lost consciousness).

Then I started cardiac rehab; the MD wants me to exercise, but only in a 'supervised environment". with the full monitoring jazz. I was excited to start. Up on the elliptical, one of my favorite machines, and starting to actually break a sweat for the first time (well, first time from EXERCISE anyway) and I got a fullness feeling in my chest. Not pain, not pressure, just full.

They made me stop, called the MD, they made me come right over.

Now I am on a "no exercise" regime - nothing, not even walking. They want a new cath ASAP to make sure something else hasn't happened. So the cath is Monday. But it was the closest I have come to being depressed. Crap - there are a bunch of 75 year olds with CHF and multiple CABG's in there exercising but I CAN't? So frustrating. Depressing.

I'm afraid I was short with my driver, or at least odd. I was on the verge of tears on the ride home, and I just hate being upset in public.... He was wonderful; he did full-on distraction. I love this driver. Did not want to cry.

Better today, but still just having trouble with it.

Setbacks suck. But it was probably unrealistic to expect to head through this journey without some.

Fingers crossed for monday.

Accepting Help

For me, asking for help has never been easy. I learned to do it first around 10 years ago when I had problems with rheumatoid arthritis. Mostly, the help I requested involved travel (asking men to hoist luggage, pick up luggage from the conveyer, carry heavy scuba gear, etc.). Even that was difficult at first, but it became easier as I realized that nearly all men like being asked for help, at least by women. It makes older men feel young and younger ones feel - well.... young and strong, I guess. They all strut a little when asked; but don't get me wrong - I am gracious and grateful for every bit of that assistance.

Beyond the chores of travel, I didn't ask for much help. I was raised to be independent, I cherish the idea and the reality of independence. And now - now, post SCA, post implantation of the Cheney-type device in my chest, I have a myriad of restrictions. So many, I posted them on a calendar with their respective countdowns. To create the illusion of control.

No lifting my left arm over my head (6 weeks); no lifting more than 10 pounds (6 weeks), no golf (varies by swing length - seriously!), and the big one due to having lost consciousness - no driving for 3 months. (Another day, I may be able to talk about the permanent no scuba rule, but too soon yet).

No driving 3 months, or 74 days now. The American essence of independence. I am fortunate in so many ways, and now one more - I can afford to hire someone to drive me around, at least for the major appointments. Or as we say in the South - to carry me around.

It grants me the illusion of independence. There is such a difference between taking kindnesses and paying for the rides.

I am far better at the latter. I pay for help more comfortably than I accept it.

Looking at Death

I have been reminded so many times in the last ten days of the W. Somerset Maugham vignette that provided the title to John O'Hara's Appointment in Samarra.

The Vignette includes 3 characters: Death, a servant and the Master. The Servant is in the Market in Baghdad one morning and encounters Death; the servant was terrified and ran back home. He told the Master he was going to Samarra to hide from Death. Off he went. The Master went down to the Market, furious that Death had frightened his servant so. Master confronted Death and Death responded something like:

"I did not mean to frighten Servant; I was just so surprised to see him this morning in Baghdad as I have an appointment with him tonight in Samarra".

I've never been one to think that we each have a predetermined "time" or that Death works on a mapped schedule. But I've seen Death now; I'm relieved it was not in Samarra.

Wrestling with Anxiety -

Anxiety seems nearly ever-present these days. It's understandable, of course, I had "sudden cardiac arrest" without a known cause; I have a new implanted device that should prevent it, but it's all of 10 days old --- so anxiety is normal.

But I have long believed that for the most part, fear is something to be beaten. I remember when I was certified as a diver - you take all the training, do all the practice and then you dive in the scary deep sea. So you do your safety checks, you stand at the back of the boat and literally take a giant stride in the ocean. Giving up your air.

On my "checkout dive" - the virgin scuba dive, a number of the people who were to go did not - could not, they were just too afraid. Several others did one dive but not the second. I remember thinking - all that training, all that expense of time and money and fear won. For something like that - a first scuba dive - or like this, the first time you exercise hard after a SCA - there is no such thing as "ready". You can do all the prep, and take all the precautions and then there is just you and your "giant stride".

Fear can't win. I rode my bike for 35 minutes, a little hard, just a little - with a helmet --- but I did it!

Fear appropriately made me take precautions - the helmet, the moderate pace - but fear was beaten; it will not deprive me of a favorite past-time.

New Normal

I have received some wonderful responses from others who are grappling with having survived this or some other near-death experience. With mine, based on what I know so far, you survive or not based on one thing - how long it takes to get shocked with paddles. And now, with a "personal defibrillator" in my chest, I have adjustments to make.

Adjusting to the fact that something close to sheer luck has me alive with minimal consequences; I can find little to no data on the likelihood of recurrence; I don't know yet what it will be like for the device to "fire", though I have heard it is decidedly unpleasant.

Finding my "new normal".

SCAA - the wonder of the web

Today I found SCAA - Sudden Cardiac Arrest Association. I don't know much about it yet, but there are many "survivors" who have posted.

I joined and posted a short version of my story along with the lead line:

"I am so grateful to have found you all".

The web defies description; no matter what, you will find others experiencing what you have experienced.

Passed the first test

Well, today was the first followup appointment at the Cardiologist. I have had to hire a driver as I cannot drive for 90 days (80 days now) due to having lost consciousness.

Today was terrific - as with all who have any surgery, this first check of the incision site is all about one thing - WHEN CAN I SHOWER? Well, good news - that is today!'

I am still immersing in my heart education process; learning the difference between the plumbing issues (arteries, blockages, etc ) which is a minor issue for me and electrical issues (bad rhythms or in my case - stopped) - and how they interrelate. It'll be a journey

First Ten MInutes - the start

Why the name?

I recently lived through an episode of "Sudden Cardiac Arrest" - I survived it because I happened to be in a hospital Emergency Room when it happened.

I was admitted for a few days of tests, procedures, monitoring and finally the insertion of my very own pacemaker/defibrillator.

On the morning of discharge, my very witty Cardiologist/electrophysiologist stopped by:

Him: How was your night?

Me: Fine.

Him: Did you sleep OK?

Me: Fine. Like a log.

Him: No problems with your heart?

Me: No. I haven't had any problems with my heart since I've been here.

Him: Well, except for those first ten minutes.............

Check back - this will be a journey of discovery, battle, adjustment, balance. Oh, and learning to accept some facts I just don't care for.

Marty

September 14, 2009