A survivor’s story: meet Sparky

Royce Robertson is a heart disease survivor. His guest blog will share his story and advice for others in four installments. Read part one here.

Royce Robertson and his family

Meet Sparky [imagine me pointing to my left chest, leaning in to show the moderate protrusion – my defibrillator]. These days Sparky and I are inseparable. We understand each other. Simpatico. However, those early days were – as the kids say – a hot mess. True confession: I’ve always been a bit of an independent spirit. Ask my wife. I am not one who relies on anyone for things I can do myself. Things I can do myself. Sparky has helped me realize that we all have things that we cannot do alone.

The first several weeks with Sparky were awkward. After the implant, I was not allowed to lift my elbow above my shoulder or put my arms over my head. This allowed the lead screws adequate time to fuse to the walls of my heart (yeah, let that thought marinate for a few seconds). To pass the time, I read the owner’s (and darn proud of it) manual. I needed to stay at least 6 inches away from running motors and microwaves as well as any anti-theft devices, magnets, and dozens of other machines. I must admit: I was overwhelmed. I spent a lot of time wondering if I was going to get shocked. Easy answer: it’s when not if, it’s only a matter of time. To my knowledge, my device has fired three times. Twice while I was unconscious. It was voluntarily fired once for testing purposes when it was implanted. It fired once involuntarily when I was passed out on the dining room floor on January 2, 2017 (See next post about my mental and emotional struggles).

You know those signs in factories that say, “This facility has gone X days without an accident”? Let’s pretend there’s one hanging from Sparky. Unfortunately, that sign only logged 10 days.

January 12, 2018, will be the one-year anniversary of the first time my device fired and I felt it – it’s a “shockiversary” if you will. In retrospect, January 12 was just the climax of a crappy week prior. Nothing felt right. I was tired all the time. My original meds did not seem to be working. My moods would rise and fall like tides in triple-time. I just could not sit still. On that day, late in the afternoon – as they say in the biz – I had to evacuate myself. I was in one of the most vulnerable of places on Earth – the stall in the men’s room – at work, no less – when I was starting to feel the same lightheaded black fog sensation I had felt before. “No, no, n-,” I frantically chanted to myself as if I were trying to stop it before it happ-CRACK! In that millisecond, Sparky reminded me of his purpose and power. The only way I can describe the feeling is to say that it’s like lightening striking inside your body – times ten. The rush of adrenaline has clogged up some of my memory; however, I do remember my scream sounding like an awkward combination of fear, surprise, pain, and anguish. Extremely overwhelmed, I was shaking from surprise and, frankly, fear. Truckloads of fear. So much so, I forgot to flush (my apologies to the next inhabitant). After an uneasy walk back to my cubicle, I asked my cubemates if they heard the scream. When they found out it was me, they each went into their own emergency response mode. I remember sitting at my desk, hands and feet shaking madly, trying to text my wife about what had happened. In between texts, I would rest my head on my desk. I was so scared, so jittery, so tired. Is this my new normal? In no time, my colleagues got me to my doctor and my wife was by my side. The doctors had a plan for a brief hospital stay for monitoring and new medication. On the surface, this new plan seemed to be what my body needed. Below the surface, my fear and anxiety were gaining momentum – waiting to come out.

My introduction to Sparky has redirected things I can do myself from independence to interdependence. I am still an independent spirit. Simultaneously, I am also learning my limits. No brainer: I cannot put my own heart back into rhythm. I need Sparky to do it for me. Likewise, I cannot exert myself. So, my family, friends, and co-workers help by plowing snow, cutting grass, driving me to and from work. Generally doing things that I cannot do myself (yet). Most of all, my wife and daughter thoughtfully, considerately, and supportively remind me that it is not a sign of weakness that I cannot do it; rather, a sign that I care about myself enough to keep Sparky from having to his job. Anyone who is struggling with their diagnosis should remember, getting help is not a sign of weakness. It is a sign of strength. The strength to share your dependence with others.  The strength to know that their help today can lead to your own independence tomorrow.

Royce’s story will continue in part three. Royce Robertson (@roycelrobertson) lives in between a handful of cornfields south of Syracuse, NY. He is a husband, father, and higher ed junkie.

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