Then

The Beginning

As the years pass, the beginning becomes more and more fuzzy. Only remembering fragments, the feelings are more intense than the imagery. I was positive I was fine. I remember feeling this overwhelming sense of calm, which I later learned is called denial.
I wasn’t fine and I think I knew that all along.
It was July 2006 and I had previously completed months of testing. EKG, echocardiogram, cardiac MRI but finally the last test had arrived. It was going to be an EP Study, the final test I needed clearance on so I could finally put this whole “you might have inherited a rare heart disease from your dad” mess aside. I remember arriving to the hospital early in the morning, ready to get it over with. My next memory is waking up to my parents faces filled with sadness.
At fourteen years old I was diagnosed with  Arrhythmogenic Right Ventricular Dysplasia/Cardiomyopathy (ARVD/C). A rare heart disease that causes the break down of healthy right-sided heart muscle into a fibrous tissue. The disruption of healthy heart muscle can cause an irregular heart beat, which can become deadly, known as tachycardia. Patients with ARVD, while still considered rare, can even develop advanced stages of congestive heart failure and require a heart transplant in order to survive. But as a previously healthy teenager, in great physical shape, the disease getting worse seemed impossible to me. But a few days after my confirmed diagnosis, I received my first ICD (Defibrillator/Pacemaker combo). It was deemed medically necessary incase I was to go into tachycardia, a safety net of sorts. For many years I resented my parents consenting to the ICD surgery because I struggled with that foreign object inside my body for so long. Believing I should have been given a choice before saddled with it. My ICD has caused me pain, embarrassment and fear. It has ruined more good times than I can count, and I always felt like it was my biggest burden to bear, until it wasn’t.

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