“Neil, you are so lucky to be healthy again and to be able to do the activities you enjoy.” This is a phrase I hear regularly. It’s been 26 years since I noticed the onset of a variety of symptoms, which were initially attributed to stress for the first five years. Then, in 1997, I was diagnosed with Lyme disease. Despite aggressive antibiotic therapy, which resolved almost all my symptoms, the damage to my heart was permanent. I lived with a severely weakened heart from 1998 to 2009, the year of my heart transplant, managing to escape death many times thanks to the pacemaker/defibrillator implanted in my chest. It’s now been 10 years since my transplant. Yes, I am lucky to be alive, able to share the joy of parenthood, and blessed to be spending more time with my wife, the love of my life. But being alive also means I have not been spared overwhelming grief, such as witnessing my daughter spend her childhood in fear of losing me.
My daughter will soon be 21 years old. I vividly recall writing her a letter in July 2009, a few days before my transplant. She was 11 years old at the time. We sent her to stay with relatives in Florida so she could enjoy the summer with family at the beach rather than stay at home and face the very real fear that her father might die. In the letter, I wrote about the special events in her life that I would miss if I died while she was away. I gave her advice on driving, dating, college, careers, and family, and repeatedly told her how being her father was the greatest privilege and thrill of my life. I told her that my death could never diminish the love I felt for her, and that although I might not be there physically, all she had to do was call my name and I would be by her side in spirit. Writing that letter may have been the most difficult task I have ever done, which speaks volumes. I remember crying a flood of tears as I wrote the letter, realizing I would not watch her grow up. (I am tearing up now just thinking about it.)
We tried to hide the extent of my illness from my daughter, but there were moments it was obvious that I was a ticking time bomb. Once, while we were at the neighborhood pool, my implantable defibrillator shocked me three times in a row. I wasn’t sure that I would survive, and out of the corner of my eye, I could see my daughter shivering with fear, a blanket wrapped around her. She was being comforted by neighbors as she watched her father on all fours, turning blue from lack of adequate blood flow and oxygen and crying out to make the shocks stop. She saw her mother, my wife, trying to comfort me, not knowing whether those might be the last moments on earth together.
Imagine a child witnessing those scenes throughout her young life. We tried to create a normal life. I coached her soccer teams throughout her elementary school years. Thankfully, most of the time, I had no issues. But, occasionally, I would fall to the ground while experiencing a potentially fatal arrhythmia, waiting for the defibrillator to deliver its horrible shock. Girls on the team would be crying in fear their coach was dying, while my daughter watched in horror knowing her world might change in the next seconds. It was difficult for her to comprehend the gravity of the situation. We wanted her to live as normal a life as possible, and not live with the constant fear that her father could die at any moment.
I remember being in the ICU a week before the transplant, which coincided with my daughter’s swim team championship. We arranged for her to go with close friends whose daughters were also on the team. My wife tried to explain that she wouldn’t be able to go to the competition because she needed to stay with me in the hospital. My daughter didn’t understand why my wife couldn’t go with her, which triggered a meltdown. There I was, fighting for my life while feeling guilty for having subjected my daughter to fears and uncertainties that I never had to face as a child and certainly never intended for her to confront.
She wasn’t able to verbalize her feelings, refused counseling, and wouldn’t talk about the trauma she obviously experienced. It was years later, after reading her college essay, that I finally realized the full extent of the devastating fear that she suffered throughout her childhood. Healing our collective emotional wounds is a long overdue priority for our family. Emotional healing is often less discussed among Lyme sufferers and caregivers, so I hope sharing my story helps others on their healing journey.
Neil Spector, MD, one of the country’s top oncologists, is a cancer researcher at the Duke University School of Medicine.