All Aboard! Self-Compassion and Acceptance with Heart Failure
I have lived over 30 years with Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC), and for the past eight years I have lived with heart failure. ARVC is an inherited heart disease that can cause deadly arrhythmias leading to sudden cardiac arrest. As the disease progresses, the heart muscle is replaced with fatty and fibrous tissue, causing it to weaken and pump inefficiently. In the worst cases of ARVC, heart transplant is needed.
I have learned that the best way to cope with the anxiety and uncertainty of living with this unpredictable cardiac condition is to treat myself with self-compassion, to accept the realities of my disease, and to live the best life I can.
My journey has taken many twists and turns. It’s like a train trip over rough terrain; down deep gullies, up to the highest peaks, around hair-raising turns, and over precarious bridges. Each section of the track offers its own challenges such as cardiac episodes, ER visits, ablations and device surgeries, PTSD after ICD shocks, and new diagnoses and treatments. Yet my train keeps chugging along, finding safety along the way in quiet stations. In those moments of calm, the views have been lovely and the company fine. I have met fellow passengers on this journey who have enhanced my trip, sharing inspirational stories of their own. I hope my story helps you. Come aboard.
The Beginning of the Journey
I was twenty years old when I collapsed with ventricular tachycardia following a rowing race. I was a collegiate varsity rower at Western University with aspirations of competing at the Olympics. I identified as a strong and skillful athlete, enjoying the thrill of outdoor pursuits like whitewater canoe tripping, cliff jumping, and ski racing. I used exercise for stress reduction, going on long runs to clear my head. In rowing I got the opportunity to push my body to its limits, enduring pain, and elation, at the outer edges of my potential. Suddenly, all that had to stop. When I was diagnosed with ARVC, I was told by my cardiologist that I could never do competitive or endurance sports again.
The particularity of ARVC is the unpredictability of deadly arrythmias. Some patients go years between events, and some may never experience a “hot phase” of recurring and random episodes of ventricular tachycardia, and even cardiac arrest. Whether influenced by stress, caffeine, physical exertion or other unknown factors, the heart can beat wildly and erratically, despite daily medications to keep it in line. The only way to save a patient during an event is to shock them with an ICD, inject them with anti-arrythmia drugs, or defibrillate them in the ER. Just like unplugging and plugging in a computer when it freezes, the reboot gets it back to normal.
I was devastated. I was in denial of my diagnosis. In response, I often pushed myself and took unnecessary physical risks that landed me in the ER.
During my twenties and thirties, I was angry and resentful at the limitations to exercise, diet, and day-to-day living I faced. I saw it as a betrayal of my body against the wishes of my mind. My dreams of the Olympics were over. I over-ate to numb my pain, lashed out at others, and retreated from intimate relationships in a misguided attempt to keep myself safe. I overworked in my career, trying for some fulfillment I could not find in my personal life. On the train journey of my life, I was in the lowest gully.
But from the depths, I could see new mountains ahead. It was not my nature to wallow in self-pity, and it was clear that my rebellious self-harm was only hurting me. I decided that big changes were necessary in my lifestyle. So, I quit my corporate job to become a full-time rowing coach at elite US colleges.
An Upward Climb
I loved coaching. Being on the water in nature, helping students reach their potential, and leading a group towards shared goals gave me purpose. Yet, even as my train was scaling higher peaks, I encountered scary hairpin turns – like the year my ICD delivered therapy 54 times. My type A+ personality had not diminished when I traded a corporate pantsuit for sweatshirts, a cubicle for a coach boat. My electrophysiologist encouraged me to slow down, but I simply changed schools to a more competitive rowing program.
Finally, my hard charging personality of always pushing myself caught up with me; I collapsed on the dock during rowing practice and was rushed to the nearest hospital where they saved my life. Later, my doctor, with tears in his eyes, pleaded with me to quit coaching. He warned me that my next cardiac episode would be my last. The reality of my situation hit me: no matter what adjustments I make to my work schedule or environment, it was incumbent upon me to change my attitude to save myself.
After quitting my coaching job and returning home to Toronto, I signed up for a week-long meditative retreat for mindfulness and self-compassion led by psychologist Dr. Christopher Germer and researcher Dr. Kristin Nuff. This retreat challenged every assumption I had about achievement and self-care. I had been brought up to believe that listening to that dark inner critic inside myself was necessary to my success. Initially, I pushed back at their encouragement to be gentle with myself, to forgive my body for its limitations, and to embrace my new reality. They advocated taking a pause and being mindful to provide a safe place for my body and mind to self-soothe and find relief. But it all seemed too soft to really work on a high achieving person like me.
Yet, as resistant as I was to their practice, I decided to give it a try, even if only to show it would not work. To my surprise, it did.
Over the years, I have attended many more retreats. I have learned to meditate by using phrases of self-compassion such as “May I be safe, may I be calm, may I live in peace.” I said these words with as much intention as possible. I tried to be open to whatever pain or unpleasantness came up and used these words to soothe myself. When sitting cross-legged on the meditation pillow, I resolved to make friends with my heart. I saw that it was not to blame, but to be forgiven. When words did not comfort me, I simply pressed my warm hands over my heart center. In time, I found myself less angry, more grateful, and more open to accepting the volatility of my condition.
This new-mind set was helpful when my mother was diagnosed with stage 4 incurable lung cancer. As her primary caregiver, I was with her each day and at all her doctor’s appointments, chemo treatments, and operations. We shared more than just a familiarity of the ins and outs of the hospitals along Toronto’s University Avenue: I had been living with the threat of sudden cardiac death to my mortality since I was 20; my mum was now confronted with the end of her life at age 78. Together, we shared our understanding of the impermanence of life, that nothing is for certain, and that accepting one’s reality of “what is” instead of “what one hopes for” is the most grounded way to cope. We had deep conversations about life and death, and where one goes after they die. We did not have answers for our questions or assuage all of our grief, but just talking about the taboo subject of death lessened our anxiety. My mother died a peaceful death, surrounded by loved ones, comforted by the fact that everyone was fine and it was her time to go. It was a profound experience.
Just four months after my mom’s death in 2014, I was diagnosed with heart failure. The train was now crossing over a bridge to an unknown land. But I felt confident that I could handle what came next because of my attitude shift. I was learning to love myself and to practice self-compassion in the darkest times. I was accepting my heart condition as it was. And I was no longer so occupied with my fear of death, but instead on living my fullest life. That shift encouraged me to embrace what I could do; to appreciate my friends, family, and loved ones with gratitude; and to live in the moment.
In short, I have negotiated a peace with my limitations, with death, and with living with ARVC and heart failure. “Negotiated,” because it’s an ongoing process to love myself and accept my condition when setbacks occur.
One aspect that has been helpful is to know my body. With heightened awareness of my heart rhythms and body feelings, I have an acute sense of when something is “off,” relative to times when I felt better. This gut feeling is so critical. When I feel “off,” I know how to begin again – with self-compassion meditation, healthy food, time in nature, and, most importantly, rest. That way I can enjoy the activities I love, like walking my dog, golfing, fishing, and kayaking. And if things don’t go back to how they once were, I have the mindset to try to accept my “new normal” with loving compassion.
The Journey Continues
My journey with ARVC and heart failure has been a long one, but I am not alone. On my train I have the best drivers and engineers: the doctors and medical team at the Peter Munk Cardiac Centre always find the smoothest, and safest, routes for me to take. Working in partnership with them, I know I have the support to go the distance.
And to enjoy the journey along the way, I have filled the passenger cars with my partner Karin, my friends, and my family. No matter the destination, I am determined we will appreciate the trip together. I will do what I can do, for as long as I can do it, for now.
It’s been one heck of a trip so far.
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