A survivor’s story: the storm after the storm

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 and part two here.

Royce Robertson and his family

In the days that passed after the day Sparky shocked me I began to feel different. Anytime I was experiencing something for “the first time since…” I would start to tighten in my chest, breathe erratically, recoil my shoulders, and my feet would begin twisting and writhing. The first time it happened I was out in a crowd. It happened again the first time that I was back in front of a classroom. Every time I thought of the next first time. To make matters worse, I started to have nightmares. Bad ones about shock, death and funerals. The worst were about dying in a car accident only to be shocked multiple times. Almost as if Sparky was trying to keep me alive despite dire injuries. A good night sleep was becoming a thing of dreams.

One of the first attacks was when I was at home alone with my daughter for the first time since. My wife had to attend a meeting at school, so we were left alone at home on the couch. The minute my wife left the house, my chest tightened. I did not want my daughter to see my feet writhe, so I did everything I could to channel my agitation into my hands, which were clutching pillows that I buried into the crevices between the couch cushions. To this day, I have no clue if she knows. All I know is that I counted every minute that my wife was gone. I made no trips to the bathroom. I don’t even remember standing up. I just remember staring at the clock, praying that my wife would get home before I got shocked again in front of my daughter. Since then I,’ve experienced at least a dozen panic attacks, some as recent as late October.

Ever the pattern finder, I tracked my attacks. It seemed there were three things that appeared to trigger my attacks: being alone with my daughter, doing things for the first time, and standing up too fast (which triggered lightheadedness, which would likely fire Sparky). Since going whole days without standing up was nearly impossible, that was possibly the most difficult to deal to with. I am an active person. Every time I stood up, I’d pause briefly, “1, 2, 3? Nothing. Whew. Move on.” Until the next time.

Every time I had an attack, including that night with my daughter, I sent my heart data to the cardiology team. For as scary as this can be, the technology still amazes me. “What happened between 12 and 2 yesterday?” I’d ask the technician. “Nothing,” he’d politely affirm. Without any actual arrhythmias or Sparky going into to standby mode, there was nothing going on with my heart that was impacting me physiologically. No data were being recorded to indicate that I was going to be shocked. It must have been in my head. My self-talk was emphatic, “I experience panic attacks. I have nightmares. I have anxiety. Let’s not mess around here.  I need help.” My daughter deserves better: a father who is both physically and mentally fit.

After a bit of research, I found a therapist whose background aligned well. I could tell that it would be a good fit from Minute One. I immediately told her that I wanted strategies not prescriptions. “I’m not planning on prescribing anything because you appear to be on enough medication as it is.”  God, I love a sharp sense of humor. For the next ten weeks, we talked and practiced strategies that would help me cope with the moments surrounding a panic attack. Mind-calming exercises, deep-breathing routines. Relaxation and clarity by any natural means necessary.

After a handful of sessions, progress was visible. The attacks were not gone but diminished. We spent our last session discussing my blessings and concerns regarding an upcoming epicardial ablation. I felt calm and confident despite knowing that doctors planned to feed microscopic welders into my heart to singe the presumed scars on my right ventricle. I am certain that there are more technical terms besides weld and singe. Author’s novice prerogative. My next appointment was scheduled for two weeks after the ablation. To prepare, I immersed myself in mental imagery: I saw myself talking with my family, happy because I was healing, doing normal things, and confidently focused on a full recovery. Not so fast, my friend. I really had no idea what was about to happen during that ablation.

It became the 90 seconds that changed my life. Stay tuned for the fourth and final installment, My Cardiac Identity Crisis.

Royce Robertson (@roycelrobertson) has no problem discussing his disease while simultaneously refusing to let it impede normal life. In his spare time, he obsesses about college sports, rides his bike (slowly), and plays a mediocre golf of game. He lives among cornfields south of Syracuse, New York, with his beautiful wife and daughter.

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