Written and submitted by Carolyn Jones
This guest blog post is by Carolyn Jones, best known for her socially proactive photographs and documentary films. Carolyn spoke on the TEDMED stage in 2016, and you can watch her talk here.
I always thought a nurse was a “just a nurse.” They take your temperature, they take your blood pressure and…that’s it. I even went through an elaborate dance with breast cancer and attributed my surviving the miserable, balding, nauseating chemo to the skill of a gifted nurse. And yet, I still had no idea what nurses were capable of, and how well they understood how we tick.
In 2011, I was asked to make a book to celebrate nurses. I thought I would make the book and move on. But when I finished it, I realized that I had only just begun to see nurses’ unique way of looking at the world. I wanted to learn more and dig deeper. So I decided to follow five nurses over the threshold into patients’ rooms and witness what they really do. That journey was nothing like what I expected. Nurses deal with life and death intimately every day. They help people in a way that is so personal, they see us naked, both emotionally and physically, and they guide us out of the depths of pain. They touch us, they comfort us, they care for us. And it doesn’t matter what color we are, what religion we practice or what political party we are affiliated with—nurses care for everyone.
One of the books that I cherish the most is Man’s Search for Meaning. In that book Viktor Frankl survives Auschwitz by identifying purpose. He gets through the horror by discovering what’s personally meaningful in his life. It’s a powerful message. It came to mind as I met nurses—they deal with what matters most in life every day as they usher patients and their families through complicated times.
Nurses throughout history have had an interesting and unique perspective on just about everything you can think of: poverty, war, school lunches, aging, home health, the prison system, hospital efficiency, coal mining, disaster relief, alcoholism, the end-of-life. They understand how these things affect our bodies and our minds.
Seeing the country through the lens of nurses has been a transformative journey for me. After 6 years of looking at issues through their non-judgmental, non-political perspective, I have discovered that we are really missing the boat if we aren’t reaching out to nurses on a regular basis about…well…everything. At least for my part, from now on, I want to consult them and hear their opinions.
Health is weird, we don’t really think about our own health until we feel sick. Then all of a sudden there is an urgency to get answers, to get things solved, but also for someone to take care of us. If we’re lucky, that person is a nurse. The skills required to care for another person are profoundly meaningful when we are hurting and quickly forgotten—like pain—as soon as we feel better. We remember the names of our doctors, but we often don’t remember the names of our nurses.
I’m not sure why we don’t place a higher value on the qualities that nurses embody. When we’re sick and we need help, nothing is more important than having someone there to care for us. Often, that’s a nurse.
Six months into The American Nurse book project, I was interviewing a nurse who uttered this tidbit of wisdom. She said, “Americans think that death is optional.” That idea propelled me to dig deeper into end-of-life issues in our country. I spent two years making a new documentary about the decisions we have to make as life-saving technologies advance even further and our choices become more numerous and infinitely more complicated.
The making of this new film, Defining HOPE, took me on a journey to discover what makes life worth living. We’re in new territory. How are we supposed to know what to do—for ourselves and our loved ones—as we get closer to the end of life? If you were to ask 100 people how they define “quality of life” you would get 100 completely unique answers. What’s important to each of us is so individualized. But there’s one thing that is universal: no matter how we define it, research shows that we all hope for quality at the end of life. Nurses are in a unique position to help us figure out what that means for ourselves and our loved ones, and to take action by starting the conversation.
Defining HOPE wants to jumpstart these critical conservations, and we hope that you’ll join us: www.HOPE.film.