I’m furious right now.
Ana, age 15, eight months before her death — Photo by author
By the time my daughter turned fifteen, she knew she was dying. She’d already been sick for four years. She’d undergone chemotherapy, a liver transplant, radiation, multiple surgeries to remove recurring tumors, and a nonstop cocktail of oral chemotherapy, anti-rejection drugs, steroids, and opioids for her pain.
Ana didn’t die because she wasn’t strong. She died because sometimes children get sick and there’s not a damn thing we can do to save them.
By the time Ana was terminal, she was done with platitudes. She didn’t want to hear how strong or brave she was. She had no patience for those who urged her to stay positive. In the last year of her life, her expectations for a miracle treatment had evaporated. She simply wanted to live for as long as she could.
She was still making plans with her friends during the final week of her life, still texting, still dragging her pain-wracked body out of bed not because the cancer wasn’t dominating her life — it was. She did this because she was determined to live her life until the moment she couldn’t.
Ana was scared of dying, but she faced illness and death anyway. This is what made Ana brave.
There is a pervasive belief in the U.S. that if we remain positive and happy, we can overcome anything — even death itself. This obsession is like a doctrine, making happiness and health each individual’s responsibility.
It’s a philosophy that turns sickness, sadness, and death into character flaws, because it implies we have control over the inevitable. If only we eat healthy enough, stay positive enough, remain strong enough, we can overcome any obstacle.
Try telling that to the parents of a 2-year-old who is dying from leukemia. I dare you.
In his 2011 essay titled, “Condemned to Joy,” author Pascal Bruckner writes:
“ Sadness is the disease of a society of obligatory well-being that penalizes those who do not attain it. Happiness is no longer a matter of chance or a heavenly gift, an amazing grace that blesses our monotonous days. We now owe it to ourselves to be happy, and we are expected to display our happiness far and wide.”
Bruckner goes on to make the connection between health and happiness as follows:
“This belief in our ability to will ourselves happy also lies behind the contemporary obsession with health. What is health, correctly understood, but a kind of permission we receive to live in peace with our bodies and to let ourselves be carefree? These days, though, we are required to resist our mortality as far as possible.”
When confronted with catastrophe, as in the case with childhood cancer, it’s impossible to deny mortality, much less maintain the illusion of happiness.
My daughter understood this before she hit puberty. The President apparently never learned it.
When Trump tweeted, “Don’t be afraid of Covid,” and “Don’t let it dominate your life,” his message was clear: It is your fault if you die from COVID-19.
Trump was perpetuating the cultish belief that we can stave off a virus not by heeding the danger, but by ignoring the reality of an illness that currently has no cure. In doing so, he likely condemned many more people to die.
He also failed to mention his unique position of privilege — money, power, access to the best medical care and to treatments not yet approved for public consumption. If Trump and his team of 20 first-class infectious disease physicians, his access to state-of-the-art medical care (and medication), and his fully equipped at-home hospital can beat the virus, so can we!
Maybe he really thinks he understands what it’s like to get sick. Maybe it’s all bluster, an attempt to appear strong and instill confidence to Americans.
It doesn’t matter what his motives are because the message is the same — Don’t let it beat you. Be strong, like me, and you can overcome illness itself. If you die, it’s your own fault.
To that I say: go fuck yourself, Mr. President.
I know parents who have flown from one end of a continent to the other in search of a cure for their dying child, parents who begged insurance companies to approve drugs under compassionate use, parents who sought out every single expert they could find, every opinion, every treatment to try to save their baby.
I know a mother whose beautiful 5-year-old daughter died less than a week after she learned about the tumor that grew on her daughter’s brain stem.
I know families who have raised hundreds of thousands of dollars to fund research to find a cure for the specific cancer that killed their child, so they could spare another family from experiencing the horror they went through.
I knew a girl who insisted she be allowed to die at home even though the tumors that grew in her lungs would eventually stop her heart from beating. She was 15-years-old and she brooked no bullshit.
I would never expect any of these people to remain strong, whatever the hell that means, in the face of such devastation.
Denying reality has consequences, after all.
Covid-19 is not cancer. There are ways to make it less lethal, but only if we face the truth of the virus — how it spreads, how sick it makes people, and its frightening mortality rate (much higher, by the way, than the flu).
We need the government to stop denying the reality of this thing, so we can actually prevent people from getting sick and save more people when they get infected.
That is the kind of logic that eludes the president. On Monday, Trump stood on a balcony at the White House, still obviously sick, and declared victory over the virus. He removed his mask, putting everyone around him at risk.
No one stopped him.
If you expected empathy or humility to emerge as a consequence of Trump’s firsthand experience with getting sick, then you were likely disappointed. If anything, Trump’s is less empathetic. Getting sick and subsequently getting better simply provided him with an opportunity to double down on his existing strategy of denial, obfuscation, and outright lies.
When our time comes, most of us don’t get to choose whether we live or die. Even Trump, beneath all the bluster and orange makeup, is forced to rely on medical science to keep the virus at bay.
Standing on a balcony, flashing a double thumbs-up and insisting he’s fine, may temporarily pull a veil over Trump’s mortality, but this is an illusion. The virus doesn’t care if he doesn’t believe in it.
If Trump survives this thing, it doesn’t make him strong — it makes him lucky. My terminally ill teenager would likely have pointed this out, if she’d had the chance. Facing reality is what made her brave and strong. Ignoring it is what makes Trump cowardly and weak.