The CollapseIn April 2010, in the midst of a long-distance run, I collapsed. Moments before I had been mid-stride in the 6th mile of a 9-mile run. Now I was on the ground, heart pounding, short of breath, and confused. Within seconds a small group of runners surrounded me. I heard their voices in the distance saying, “She must be dehydrated or over-trained.”
“Yes,” I reasoned with myself, “dehydrated.” I’d been training for this half marathon for a few months. “I must have overdone it on my sunrise runs.”
Five minutes passed. Then ten. Then fifteen. The last remnants of other runners’ water bottles had been exhausted in an effort to rehydrate me. “I should have my bearings by now,” I thought, “or at least feel less shaky.” I tried to sit up but couldn’t muster the strength to get higher than my elbows. I didn’t have the dexterity to unzip the pocket of my wind-shell to reach my cell phone. More people came. More speculation and suggestions. Eventually someone dialed 911.
Twenty-five minutes after my collapse I was wheeled out of the back of an ambulance into the emergency room of a nearby hospital. Two EMTs had been unable to get a blood pressure reading as I lay in the street. They assessed the situation as critical and decided to perform a wrap-and-run operation rather than wait for medics. As the gurney burst through the emergency room doors, I heard the words “Code-blue in emergency!” announced over an intercom. I prayed that call wasn’t for me. Deep down I knew it was.
As I was whisked down the stark white corridor, there was an eruption of organized chaos all around me. I closed my eyes as a deep sense of exhaustion washed over me. Carla, a slim, 30-something-year-old nurse who had been running alongside the gurney with my left wrist squeezed between her fingers, grabbed my shoulder with her free hand and shook me with jarring force. “Jennifer, we need you to stay with us. Do NOT go to sleep! Do you understand me? Open your eyes. Jennifer, OPEN YOUR EYES! Stay with us!” she commanded. It took Herculean effort to fight the urge to drift off.
One minute I was slipping into oblivion surrounded by a flurry of activity in the critical care bay: orders shouted, clothes cut off (my lucky shorts!), blood drawn, meds pushed into two IVs, nasal cannula replaced by oxygen mask, the strange cold-wet sensation of defibrillator pads being placed, ECG leads and lines everywhere. The next minute, there was silence. The ECG monitor showed my heart rhythm trapped wildly in ventricular tachycardia, quivering at more than 300 beats per minute. It was as if a tornado had erupted inside my heart. “All clear!” was shouted. BAMB! Two hundred joules of energy exploded through my chest and into my heart. No one moved or uttered a word as they stared up at the ECG monitor intently. A normal sinus rhythm suddenly appeared. Everyone was waiting to see if this marvel of modern medical technology would stick. The fact that I survived intact from this 40-minute ordeal was considered a true miracle.
Six days and two hospital transfers later, I was diagnosed with Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC), a rare, genetic cardiac disease and a leading cause of sudden cardiac death in young, otherwise healthy people. Athletes are at particular risk for sudden cardiac death if they have this genetic anomaly. It is most often diagnosed via autopsy.An internal defibrillator was implanted, a machine the size of a deck of cards capable of delivering a shock similar to the one I received in the ER, to correct the likelihood of future tornados. Meds were given to limit the damaging effects of ordinary hormones on the heart. Epinephrine and norepinephrine were now potential killers. The damage already done could not be reversed, but modern medicine might slow the progression of this silent killer.
Since this is a genetic disease, my children and parents needed to be screened as well. My mother and my two teenaged sons were positive for the same genetic mutation. My mother died of a sudden cardiac arrest in the middle of doing screenings and planning next steps. My sons had to cease all sports immediately, a high price when you’re 16 with lifelong aspirations of collegiate sports. They will be closely monitored for the rest of their lives.
The Chronic Disease Club
Our world had changed. We were now members of the chronic disease club. Medicine saved my life. It could extend life for me and my sons. For this I was and am beyond grateful. But in the months that followed, coming to terms with my own condition and adjusting to my new life, I began to wonder about the quality of life of all the people in the world living with chronic and degenerative diseases, especially those who are less fortunate, less prepared, with less access to care. I felt sad that I had never really thought of them before. Now I couldn’t stop thinking of them, of us.
Chronic illness is a source of significant stress for those living with it and their immediate family members. The DSM classification handbook for mental health professionals identifies chronic illness as a precipitating feature of post-traumatic stress disorder (PTSD). Illnesses that create recurrent unpredictable threats to physical safety can induce feelings of helplessness and pose greater adjustment challenges over the lifetime of the illness than more stable and predictable diseases. Unlike acute illness, chronic diseases should be measured in terms of recurring events and stressors that compound over time. According to research, it is the accumulation of stressful events (big and small) that tips the scale in the direction of psycho-social difficulties.
Imagine, if you will, that parallel to every other challenge that life throws at you (financial stress, relationship challenges, loss of a loved one, natural disaster, job challenges, moving), you are also navigating life with a chronic illness. This added stress becomes the breeding ground for psychological, social, and emotional drag. It’s life, only harder.
In the words of Bob Thaves, “Sure he was great, but don’t forget that Ginger Rogers did everything Fred Astaire did except backwards and in heels.” People with chronic illness navigate an added level of struggle every day.
What About Quality of Life?While advances in medicine have extended life expectancy, the extension of life comes at a cost. Managing life with a chronic, degenerative disease can precipitate or worsen preexisting mental health issues. Think of cardiac disease, seizure disorders, neurological and autoimmune disorders. This is the reality for 133 million Americans, and billions of people around the world. According to Atul Gawande, “We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive.”
The gap that exists in medicine between extending life and supporting quality of life was my inspiration for studying positive psychology. It was also the focus of my MAPP capstone. In it I provide evidence of the need to address psychological, social, and emotional well-being with the same gravity used to treat illness and extend life.
ARVC provides examples of the challenges that individuals and families face living with chronic illness. My capstone provides evidence and strategies for preventing downward spirals and promoting resilience and well-being.The HEART Initiative, the manifestation of my capstone, is a social impact organization dedicated to helping people with chronic illness thrive. Using research and interventions drawn from resilience theory, applied positive psychology, and epigenetics, the HEART Initiative merges Hope, Engagement, Action, and Resources to cultivate Thriving.
As a practicing psychotherapist for more than a decade before my sudden cardiac arrest in 2010, I was well versed in helping people cope with depression, anxiety, bipolar and personality disorders, unhappy marriages, troubled teens, and trauma. I knew a lot about how to help people move from a -7, -8, -9, and even -10 to +1, + 2, or + 3. I felt honored to help reduce suffering in the world. Yet, I knew very little about how to help people thrive, and nothing about what it would take to thrive in the face of recurrent crises and trials from which there is presently no cure.
Living with a chronic, life-threatening illness poses many challenges. It is imperative that we provide those dealing with such a diagnosis the skills necessary to go beyond surviving to thriving. As a person living with a chronic illness, I want to live the best version of my life that I can. That is what I want for my sons. That is what all people living with chronic disease want: not only to survive, but to thrive. That is the mission of the HEART Initiative.
For more information about ways to get involved in the HEART initiative, such as donating to the initiative, click on the figure below.
Cory, J. (2015). Arrhythmogenic Right Ventricular Cardiomyopathy: From surviving to thriving. MAPP Capstone, University of Pennsylvania.
American Association of Retired Persons. Chronic Conditions among Older Americans.
Fried, L. (2017). America’s Health and Health Care Depend on Preventing Chronic Disease. Huffington Post.
Gawande, A. (2014). Being Mortal: Medicine and What Matters in the End. New York, NY: Metropolitan Books.
Keyes, C. L. M. (2007). Promoting and protecting mental health as flourishing: A complementary strategy for improving national mental health. American Psychologist, 62(2), 95.
Ryff, C. D., & Keyes, C. L. M. (1995). The structure of psychological well-being revisited. Journal of Personality and Social Psychology, 69(4), 719.
Tinker, A. (2017). How to Improve Patient Outcomes for Chronic Diseases and Comorbidities. Health Catalyst.
Turner, R. J., & Lloyd, D. A. (1995). Lifetime traumas and mental health: The significance of cumulative adversity. Journal of Health and Social Behavior, 6, 360-376.
Runner Photo by Quino Al on Unsplash
Blood pressure Photo by rawpixel on Unsplash
Internal defibrillator courtesy of Blausen.com staff (2014). Medical gallery of Blausen Medical 2014. WikiJournal of Medicine 1 (2). DOI:10.15347/wjm/2014.010. ISSN 2002-4436. – Own work.
Fred and Ginger dancing reproduced on page 67 of John Mueller: Astaire Dancing – The Musical Films of Fred Astaire, Knopf 1985, ISBN 0394516540
Picture of Jennifer at the European Conference on Positive Psychology courtesy of Elaine O’Brien