When I met Nancy in the office, she was wasting away, and it was clear she knew death was imminent. I could tell she had been plagued from an early age by a sense of inadequacy instilled in her by her parents: a feeling of not being smart enough, not being skinny enough. She felt like she needed to do more, to be more. She had been walking around with this heavy burden on her shoulders every day of her young life. But then she found a drug that made her feel better. With crystal meth, she felt like she could conquer the world, that she could be anything she wanted, no matter what other people thought. That feeling lasted until her addiction turned to a life-threatening lung disease called pulmonary hypertension. When I asked her, “What would you do if today was your last day?” she thought for a moment, then whispered, “All my life I’ve been trying to be what everyone wanted me to be: the pretty girl, the smart girl, the girl who achieved stardom.” Then she paused. “So on my last day, I want to meet just one person's expectations: my own,” she said, nodding slowly to make her point, “That way, I can at least have one day of peace.”
I asked the nurse to put her on the waiting list as soon as possible. I realized that I had asked thousands of patients the same question and not one of them had answered, “Oh, I wish I had lived my life the way other people expected me to. That would have been great!”
I asked myself: have we really spent enough time thinking about how we would live if we were free from expectations? And would we regret living on our own terms at the end of our lives? I am happy to say that Nancy now has two healthy lungs and a chance to reboot and live life the way she wants.
Not all patients are like Nancy, and in medical school we are taught to treat everyone the same, but Larry tested me.
When Larry, a white man, learned that his life had been saved by a transplant using lungs donated by a black man, he fiercely demanded to know sooner and why he had not been given the opportunity to refuse the lungs. All of us in the room were speechless. His words echoed with the weight of centuries of hatred, ignorance and prejudice.
But as the months of Larry’s recovery passed, something changed in him. Perhaps there was still some question about how he would spend his final days, or perhaps his newly restored health made him more grateful for the gift of life, but either way, he developed a curiosity about the people who had given him a second chance. He sought out his donor’s family, expressed his sincere gratitude, and forged an intimate connection with people he had once viewed through the lens of ignorance. During his post-op appointment, in a deeply humbling moment, Larry admitted that he had formed many of his beliefs out of ignorance. He was ashamed that he had spent so much of his life judging people based on their race, admitting that “everyone’s blood is red.” I assured him that this was true.
As I have advocated for patients who need transplants, regardless of race or socioeconomic status, I have been thinking about the biases we harbor in our minds that we are not fully aware of. For example, Larry was willing to accept a healthy lung for transplant because he was blinded by bias. Instead of falling into depressing thought cycles about deeply rooted biases and harmful judgments, I asked myself: “If we shed our layers of defense against people we deem ‘foreign,’ what opportunities for growth, connection, and happiness would we find?” And how might considering healthspan, not just lifespan, encourage us to do so? It seems most people would not waste their last days judging or hating others.
Finally, we have Katherine, who has been ill with cystic fibrosis most of her life and was hospitalized more than 40 times in her 31 years of life. When she wasn't hospitalized, Katherine adhered to her treatment plan, spending 4-6 hours a day. The rest of the time, despite her exhaustion, she tried to put her life back together, which included a man named Henry whom she met on a dating app. After a few dates, Katherine told Henry she had cystic fibrosis, and he said, “I know.” “Why?” Katherine asked.
“My sister did too. She died when we were little. I helped my parents take care of her.” Henry knew what the disease was like long before he met Katherine, and perhaps he was getting a master class in how to live with it through his experience with his sister. Instead of running from Katherine, Henry ran towards her. They later got married, and one day they came to my lung transplant clinic together when Katherine's lungs deteriorated to the point where she was bedridden and on oxygen 24/7.
They held hands as we discussed the transplant process. After I finished explaining the procedure, I asked her, “What would you do if today was your last day?” Before I had finished asking my questions, tears were streaming down Catherine's face. I turned to Henry and he was crying too.
“Doctor, that's the easiest question of the day,” she said. “I spent many days walking with Henry in the park near our house, holding his hand, telling him how much I loved him and how much he'd supported me. And when I could no longer walk, when I was exhausted, I sat with him on a bench overlooking the lake in the park, and I told him that his love made me not only the luckiest person who had ever lived, but the luckiest person who had ever lived.”
There were no additional questions.
Fortunately, most transplants are successful, including Katherine's, so my patients have had the opportunity to course correct along the way and press the most powerful reset button. But they are not the exception. Time is ticking for all of us. If we truly accept the fact that we cannot live forever, can we make the changes necessary to identify what is truly important to us and live with that as our North Star?
My guess is that if everyone did this, we'd stop trying to figure out what's important on our screens, on social media, or in the echo chambers of cable news.
we, The sickest, most depressed, anxious and stressed cultures in the world — and yet we’re obsessed with longevity. It seems odd that we’re so obsessed with longevity, yet our quality of life is often, well, terrible. (Yes, that’s a medical term.) So why do we continue to obsess about living longer when we haven’t yet decided what the best life is?
My intuition tells me that while we spend an incredible amount of time on the external—looking good, over-packing our schedules, crossing off to-do lists, and, of course, making time for doom-scrolling—we spend very little time on our inner lives, on delving into the depths of self-discovery. This is what I’ve learned from 20 years of master classes my patients have gifted me: it’s important that we spend time doing introspective, meditative inward-looking work, which includes asking ourselves the difficult question: what would you do if you only had one more day to live?
Spend some time now thinking about what really matters to you, and if you live each day as if it were your last, you will win, because one day it will be.
*Names have been changed to protect patient privacy.
