Editor's Note: The following article was written by Carly Ornstein, National Director of Lung Cancer Education at the American Lung Association.
“Radical Acceptance rests on letting go of the illusion of control and a willingness to notice and accept things as they are right now, without judging.”– Marsha M. Linehan
Radical acceptance is an idea that has been floating around in my mind since I first heard the term a few years ago. Radical acceptance, first described by psychologist and author Marsha Linehan, is a coping skill where a person accepts life on life’s terms and does not resist what cannot be changed. After I learned more about this skill, I immediately thought it might apply to lung cancer. Let me explain.
Smoking was common in my family
Lung cancer is a cause for which I am personally and professionally passionate about. I grew up in a family of smokers. In an effort to keep kids off tobacco, my public elementary school in the 90’s impressed upon its students that if you smoke, you will get lung cancer and die. This of course did not sit well with a child who had two parents who smoked and numerous other relatives who smoked. I cried. Boy did I cry. I constantly begged my parents to quit smoking. My mother finally quit when I was a teenager, but it would be many years before my father would do the same.
My emotional reaction to my parent’s smoking is not unique. In fact, former First Lady Michelle Obama talked about her experience with her parents smoking in her book, Becoming (excerpted below).
“We lectured our parents about lung cancer, explaining the horrors that had been shown to us in filmstrips during health class at school...The paradigm was simple enough to make their behavior confounding: Good/Bad. Healthy/Sick. You choose your own future. It was everything our parents had taught us. And yet it would be years before they finally quit.”
Looking into my family history
When I was in college, my paternal grandmother died from lung cancer. My family hid her smoking history and the extent of her disease until a few months before her death. When I asked to go see her before she died, they told me I would “not want to see her like that” and so I never did get to say goodbye to my beloved grandmother. It was not surprising my grandmother smoked. Born in Manheim, Germany, her family escaped the Holocaust and immigrated to the United States when she was a child. She recalled to me that as a kid, she and her friends would chew tar for fun. Smoking was not a big leap for her, especially as her and my grandfather carried around the unspeakable stress of being Holocaust survivors.
When I was in graduate school for public health, my father was diagnosed with stage 3 lung cancer, the exact same rare histology his mother had: combined small cell and non-small cell lung cancer. I was devastated and angry. Luckily, the diagnosis motivated him to quit smoking and after several surgeries, chemotherapy, and brain radiation, he is still alive today.
Starting my career advocating for lung cancer education
Following my graduation, with my new master’s in public health degree in tow, I was fortunate to be hired at the American Lung Association to help build out their lung cancer content. For the past nine years I have dived into researching every aspect of the lung cancer experience, including the connection to tobacco and lung cancer stigma (which exists in part as an unintended consequence of anti-tobacco education, as evidenced by mine and Michelle Obama’s experiences). I learned that tobacco use is not a habit, it is an addiction. A powerful addiction that I may never understand. But that does not mean I cannot be empathetic to those experiencing it. Many lung cancer patients who have smoking histories are hesitant to seek support or advocate for themselves because of the stigma that they brought this disease on themselves. I learned the role of the tobacco companies and how they targeted the most vulnerable populations and made their products more addictive at the expense of millions of Americans. We see them repeating history right in front of us as the nation fights a vaping epidemic. I also learned about the dangers of radon, which is the second leading cause of lung cancer. I made my parents test my childhood home and sure enough, there were high radon levels that have since been remediated. I have also seen hope. In my time here, lung cancer screening has become widely available for those who are at high risk for lung cancer and there have been numerous targeted and immunotherapy lung cancer drug approvals.
It's time to end the lung cancer stigma
The past few years have been a challenge, especially in the face of the COVID-19 pandemic. Wins have included both my parents being immunized against COVID-19, enrolling my mom in yearly lung cancer screenings, and accompanying my Dad to his pulmonologist appointments despite living almost 700 miles away from my parents (woohoo telehealth!). I do have fears my parent’s smoking history will rob me of precious time with them and that fear can easily display as anger. I see myself turning into that child begging and pleading with her parents to quit smoking. But then I draw on what I know to be true about tobacco use and access my empathy and radical acceptance. Doesn’t every person deserve that?
I know I am not alone. In my work at the Lung Association, I have met many “children” (some in their 60’s) who struggle to make sense of their parent’s smoking histories and lung cancer diagnoses. I also see the stigma many people facing lung cancer experience, not just those with a smoking history. If I could tell anything to those with similar stories it would be: I see you. Let’s not be the ones stigmatizing lung cancer patients even more. May we all challenge ourselves to accept the past and connect with our empathy. Even if it may seem radical.
Have you had biomarker testing done?