Friday, June 27, 2014
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.
Monday, April 21, 2014
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.