Flash memory from the archives of my life: It’s the summer of 1997 and we’re moving my disabled sister, Wendy, into a nursing home. She’s in her room at my parents’ house. She’s a 30-year-old woman who needs 24-hour care and my elderly parents can no longer afford it. Her life is falling apart around her: her decorations are carefully packed for shipping, her expensive stereo cords are untied and coiled like a snake. My sister doesn’t understand what’s happening. She looks up at me from where she’s sitting on the floor and yells angrily:Because, why “Does everything have to change?”
This memory has been coming back to me in recent weeks, ever since the US presidential debate. At first glance, nothing about Wendy reminds us of President Biden’s life story (he has never had the chance to be in politics or lead a country), but the more I see, the more Biden is caught in the gears of time, or trying to cope with it. If not, I understand that he is fighting the same battle my sister has been fighting for decades. In time, we will all be called to those front lines where, ultimately, we will all lose.
Wendy had a brain tumor as a child. The surgery to remove that tumor was fraught with post-operative complications. However, she defied the odds, living to the age of 52 and regaining the physical and mental abilities that doctors had initially destroyed forever. In many ways, she was the beating heart of our family. I always felt that her life said a lot about the people we were. He was the one who defied the odds, and we were the ones who never stopped betting on him. This is a good story. Hollywood history, even.
At some point, stories of “happiness” can turn tragic, starting microscopically. The line between hope and illusion is thinning, and at the same time, it’s sometimes hard to know when you or your family are crossing the line. Some people never walk again. Some brains never heal. You can’t beat the odds, either. These aren’t even “trustworthy” because the expected outcome isn’t possible. One of my hardest tasks as a doctor is to help patients and their families cope with the moment when these contradictions lead them to an inescapable truth that we’re all tempted to resist: When it comes to health, one day you’ll be lucky. You’ll get to exercise eventually. Outside.
Like my sister, Biden survived a risky neurosurgery in his case after an aneurysm in 1988But the most important commonality between my sister and the US president is a personal narrative of overcoming adversity, which Biden alluded to in his wide-ranging remarks. interview with George Stephanopoulos. Biden may have written his own story of victory, but in my sister’s case, it came from the people who loved her. They were both cast in that classic Hollywood role: the fighter you can never count out against all odds.
Practicing medicine had a way of keeping me grounded when it came to the concept of “fighters.” While personal qualities like resilience are important, they cannot negate the inevitable. Decline and death are indisputable parts of life.
And yet they were still There were times when even I believed my sister would win any bet. In those early years, every time she almost died, she would show up. But it was also true that as the years went by, with each new medical problem, she was like a basketball player with a little less air left. She didn’t fall again. Slowly she began to fade away. Her brain, damaged after the surgery and the subsequent seizure, had no resources to heal the new injuries. When she died, she was a fragment of her former self. If she has nine lives, then she has suffered enough for nine lives.
Biden also appears to be a fragment of the ugly, uninspired professional politician he once was. His lack of understanding of public concern about his health is itself a worrying sign. Nothing seems to change his mind about his return.
The irony, of course, is that Biden’s self-image as a fighter has served him well so far. He came back early, smiled, and persisted. His family may have believed his stature as a “fighter” was some kind of mythical, fictional truth, and I’m sure the story gave them strength and comfort during difficult times. Don’t count the father. Other people have made this mistake before.
But “other people” are not the only ones who can make mistakes when judging our loved ones. Some research shows that families don’t notice cognitive decline in older patients unless it’s accompanied by behavioral signs and symptoms. Even when someone is struggling with an act as simple as making toast, our long-term history of trusting their authority can blind us to what’s happening in real time. Even when it’s not just the toaster that’s on fire, but the entire house, it’s hard for families who’ve seen their loved one come back from the doorstep many times to believe that they won’t see this magic trick happen one more time, just in time.
Time Isn’t that what it all comes down to? Not so much the nickname of time, but the dances of time: death by a thousand little cuts. The story of our life cannot be rewritten. Things have to change. Sometimes we don’t understand why and it hurts. But that doesn’t change the reality of what comes next.
Jillian Horton is a writer and physician. Her first book, We Are All Good: A Memoir of Love, Medicine, and Healing, is being adapted for television. @jillianhortonMD
