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.