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Stories from the ARVD/ARVC Community

Meet Heather

I have now been living longer with the arrhythmogenic right ventricular dysplasia (AVRC) diagnosis than without it. I am 48 years old. When I was 20 years old, I collapsed during a rowing race and nearly died. At least six times since then I have cheated death. I am now onto my third implantable cardioverter defibrillator (ICD), and was diagnosed with heart failure in 2014 as my ARVC disease progresses.

For the past 25-plus years I have learned to live in an entirely new way than my first 20 years. Before my diagnosis, I was an accomplished athlete in peak physical condition, with hopes of making the Olympic rowing team for Canada. I loved to take physical risks: cliff jumping into the water, whitewater canoeing, skiing fast and running to exhaustion. I enjoyed pushing my body and testing the limits of my strength and endurance. My heart was my accomplice in adventure.

It has taken many, many years to accept the limitations of my heart. It has been a long journey of frustration, denial, fear and sometimes depression. Not a day goes by when I am not reminded of what I can and cannot do to stay alive. The list of “can’ts” are endless; can’t row, can’t run, can’t play tennis, can’t ski…can’t, can’t can’t. It’s a four-letter word I would like to banish from my vocabulary.

Here is what I can do. I can walk my dog for miles at a slow pace. I can play golf, fly-fish and kayak gently. I can entertain my friends, dance slowly and travel to major cities. I can cheer for my favorite sports teams and splash around in the water with my niece. I can read, keep a journal, eat healthfully and meditate. I can live a full and joyful life with ARVC.

Over the years I have grudgingly learned to be more self-compassionate. I have slowly replaced stoicism with vulnerability, and gone from being an extreme type A++ to just an A. I have developed an appreciation for my birthdays, since getting older is a triumph! I have replaced the high of winning a tough tennis match with the satisfaction of making a one-putt. And I have learned that sometimes the bravest thing to do when facing adversity is to care for yourself.