A crisis of freedom

I wake up in the morning. I struggle to get through the day. I sleep at night and then wake up in the morning to do it all over again. The truth isn't even that simple or uniform. I often struggle to fall asleep. My sleep is often interrupted by anxious thoughts and dreams. I struggle to get my day started due to fatigue and a sense of dread. The day ahead is suddenly unfamiliar, abnormal, not a life story being written by me. The result is a sense of dread, and a struggle to maintain and preserve the essence of who I am. I am a healthcare worker in 2022.

It's May 3, 2022, and we have lived through more than 2 years of a deadly and completely disruptive, life-changing global COVID pandemic. Overwhelming death tolls. Unimaginable loss. A pervasive sense of the real threat of death that could come at any moment. True “Death Terror”. As health workers and palliative/supportive care providers the “Death Salience” was absolute and unavoidable, and it took a toll on us all. Now, for almost 3 months, we are living through the global threat of war in Ukraine; inhumane violence, war crimes, millions of lives lost and destroyed, genocide, a refugee crisis, and flashbacks to the atrocities reminiscent of Hitler during World War II.

I think I speak for many, when I admit that I fear for the sustainability of healthcare delivery systems throughout the world, even in countries with highly developed economies. Perhaps the greatest risk to the viability of our healthcare systems is our “human capital.” We health workers on the front lines are exhausted and demoralized. Burnout is too mild a term. What we have lost is the ability to firmly preserve the essence of who we are. We have been overwhelmed. We are paralyzed in a state of Anxiety and Dread. Perhaps it is true, as the painter Julian Schnabel once remarked in an interview on “being a painter,” that “Anxiety is the dizziness of Freedom.”

It was Irvin Yalom (Reference Yalom1980) who brought existential psychotherapy into the forefront of modern psychotherapies aimed at addressing the existential concerns of human beings. Yalom is noted for his elucidation of the four basic human existential concerns. Yalom described these basic human concerns as follows: (1) Death: the inevitability of death, the ultimate limitation; (2) Freedom: the responsibility and freedom to make our lives as we will, to be the sole authors of our lives, thus leaving us groundless with no one to determine our destiny but ourselves; (3) Existential Isolation: our ultimate aloneness — we are born alone and die alone; and (4) Meaninglessness: the concern that we will have ultimately led a life without meaning, the absence of a given meaning which thus leaves us solely responsible for the creation and experience of meaning in our lives.

Perhaps it is Freedom that is most at threat over the past two and a half years. Yes, we have the responsibility and the freedom to create ourselves and our lives as we will, to be the sole authors of our lives. Yes, this Freedom leaves us groundless in the sense that no one else but ourselves are responsible to be the sole authors of our lives. But, as many of our patients with life threatening and limiting illness have been illustrating for us over the course of our careers, this responsibility/freedom is extraordinarily challenging when the external and internal worlds conspire to destroy much of our ability to continue to be who we are and who we have become.

The oldest living woman in the world dies at 119

On April 19, 2022, Kane Tanaka died in the Japanese City of Fukuoka. She was 119 years old, and until her death, was the world's oldest living person. Despite a difficult life, in which she overcame colon cancer, pancreatic cancer, the death of her husband from Alzheimer's, and the death of her two sons, she was described as irrepressibly funny. When she was 116 years old, she was interviewed by reporters who asked her the type of questions one asks someone who has achieved such longevity. What, they asked, was the secret to living so long? “Being myself” she said. Happiest moment? “Now.” Best diet for staying healthy? “Appreciate everything I eat.”

In a life that spanned close to 120 years, Kane Tanaka had learned the important lessons knowing who she was, who she wanted to become, and the necessity to preserve being herself, in order to live a life of meaning and contentment. All this despite living through the trials and tribulations that life brings you from inside and outside your body.

Who are you? Who do you want to be? Who do you want to help along the way?

I quoted some lyrics from the song FREEDOM by Jon Batiste at the top of this editorial. Mr. Batiste is a Grammy Award winning musician and a highly intelligent and spiritual young man. Hopefully some of you will seek out his music to appreciate his talents. Just prior to the 64th Annual Grammy Awards ceremony in 2022, where Mr. Batiste won a Grammy Award for Best Album of the Year (We Are), he married his long-time girlfriend Suleika Jaouad, on April 4, just before she was scheduled to undergo a second bone marrow transplant for recurrent leukemia. They met as young people in music camp but reconnected when she first became ill.

Perhaps it is something that Mr. Batiste advised the 2017 Graduating Class of Salve Regina University, at his commencement address that best explains who he is and how he chooses to live his life (Batiste, Reference Batiste2017). In his commencement address, Mr. Batiste advised the graduating class that there are essentially three basic tasks to living a meaningful life, and that is through defining and answering the following three questions: Who are you? Who do you want to be? Who do you want to help along the way? It is through answering these questions, he postulated, that you create your values, your essence your attitudes toward the world, the “who” that you create as you create what we often call your life.

Throughout the turmoil of these past two and a half years, I think the question that I have not paid enough attention to, and perhaps others among us have forgotten as well, is “Who do I want to help along the way?” It is ultimately a question of “Intention” and a question of “Care.” As we create a “Who” in the world, it is the choices and attitudes and values that are created guided by the intention we have for our lives. The “Intention” or purpose. It is the intentionality of our lives — who and what do I want to impact and influence in the world? For me, it has always been to ease palliative existential suffering and despair. That informs my choices and attitudes, guided by the values that have been crystallized by my legacy and my lived experience. Care involves a complex amalgam of the nature of my engagement in the world — a world composed of the external world and my own internal world. Like my fellow palliative care and psycho-oncology clinicians, I care about my patients and their families and their suffering. I am engaged in easing their suffering my giving all my talents, all my time, all my energy, all my intellect, and all my emotions to create the interventions that can ease their suffering and delivering the clinical care so needed by them. But COVID has taught me a harsh and important lesson, hopefully not too late in the game, and hopefully one that others must be reminded of. I need to take care of myself in order to take care of others. It's not just rhetoric or a meme. It's actually potentially lifesaving. Caring for others is extraordinarily rewarding, and we do often receive more than we give. However, these has been extraordinary times, and they don't appear to be changing dramatically any time soon. Remembering that we exist and have created a life in order to both fulfill our passions and help others along the way is critical to living a rewarding life. We must never forget that there needs to be a balance between the two. That's not work–life balance, that's life–life balance.