Editor’s Note: Xeni Jardin is an editor and founding partner at BoingBoing.net. The opinions expressed in this commentary are solely hers.
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Xeni Jardin says she survived cancer before Obamacare but others shouldn't have to
She says cure to health care problems is to create universal health care for all Americans
When I was diagnosed with breast cancer on December 1, 2011, I didn’t know what would come next, but I knew it wasn’t going to be easy. I feel the same way now, the morning after Republicans in the House of Representatives conspired with our President to destroy critical health care protections that are my lifeline, and that of millions of my fellow Americans.
Some of them didn’t even read the bill for which they voted. Such was their inhuman detachment from the reality of its likely consequences.
Perhaps some of what I learned about surviving cancer will help those of you now afraid of losing your access to lifesaving treatment. Spoiler: I lived.
When news broke that the American Health Care Act had passed the House by less than five votes, it aired with footage of that bizarre Rose Garden party at which lawmakers and President Donald Trump, pretty much all older white men, gathered with cases of Bud Light to party. Some reports have them pre-gaming before the vote, getting pumped up by listening to “Takin’ Care of Business” and the theme from “Rocky.”
Seriously, who does those things before or after stealing health care from 24 million people?
Like so much of these past 100 days of the new presidency, had it been fiction, a sharp editor would’ve sent it back for rewrite – too grotesque, too over-the-top weird.
The frat party footage rolled. “Hold my beer,” you can imagine one of those lawmakers in the Rose Garden saying, as Twitter and Facebook and Snapchat and our phone texts exploded with loved ones realizing they, their moms and dads, their babies and grandparents, may suddenly be in mortal danger.
But even in that White House garden where all those men stood, the soil yields diverse colors of flowers, crawling vines and shrubs, and even the random weed that manages to sprout. Even there, with the beer, we are reminded that the diversity of genes makes living organisms strong. The diversity of America makes us strong.
During my treatment, I learned that people like to speak of cancer as a battle. It is not. It is a disease of cellular biology, a progressive one, that strikes without warning and seemingly without logic. My National Institutes of Health-trained oncologist helped me understand that this wasn’t a foreign terrorist enemy, so to speak, but my own native cells gone haywire. Like Congress. That shared body of representatives has one common job, to represent the well-being of our human American lives. How could they take an action that is so clearly against the most basic human interest, of remaining alive? I felt that same sense of betrayal about my body’s own rogue cells. I needed chemotherapy, surgery, and radiation. In my opinion, those heartless congressmen need tough medicine, too. And they need to start looking for new jobs.
The idea of being thrown back into a world where people can be denied coverage because of pre-existing conditions strikes a terror inside me that is not abstract. I lived that fear and I know those determinations can have life-threatening consequences.
I was first diagnosed before Obamacare, and I had only purchased my policy a few months beforehand. Insurance was expensive, my income limited, and I didn’t consider myself at risk. I was a yoga-doing, bicycling vegan health nut who neither drank nor smoked, meditated regularly and did all the perfect things I’d learned to do to prevent cancer. I didn’t understand that you don’t get cancer because you’ve been bad – it’s just a lightning strike.
But when I began chemo, my insurance company opened a fraud investigation because it thought I might’ve hidden my cancer as a pre-existing condition. I know, it sounds pretty nutty. Had the company’s investigation found me guilty (I wasn’t and it didn’t), my treatment would’ve ended immediately.
In those years, women with pre-existing conditions were routinely denied lifesaving breast cancer treatment unless they could come up with the impossible amount of money it took to pay directly. Until 2012, much of the dark humor in our waiting rooms was about how only rich people in America could afford to get cancer.
Before Obamacare, some of the cancer medications I had to take were hundreds of dollars a pill. All of that changed in the middle of my initial treatment course when the Affordable Care Act went into effect. Now my prescription refills were $20 instead of $800. Mercifully lifted was the familiar and ever-present fear that my access to what keeps me alive would be taken away right when I needed it most, and I would die.
For me, cancer was never a battle. But surviving the dehumanizing labyrinth of medical care before Obamacare was.
And what we have before us now, yes, this is a battle, too. A fight for the body and soul of America – my own, and yours, everyone you love. This is not health care. This is life care.
We don’t get to choose the body we are born into, and the cells that exist within us. Some may be cancerous, others healthy. We don’t get to choose the country we are born into, and even though many of us voted, I didn’t choose this president. None of that matters. We now have a diagnosis. We all share it.
And the cure is an inclusive process to create a truly functional and representative system of universal health care for all human beings in America.
Bring in the doctors, the nurses, the patients, the insurers, the scientists, the women with metastatic cancer, the researchers whose funding has been cut and whose innovations we desperately need to find a cure. Let every voice be heard. Let it be in the sunlight. Let the work be checked – and read by all the legislators who have power over us.
We need a no-BS approach to health care that honors the words of our forefathers. Every American is entitled to life, liberty and the pursuit of happiness. You can’t get to liberty or happiness without your life.
Folks like to tell us cancer patients a lot about how prayer and positive thinking can cure cancer. I prayed. God answered my prayers. He told me to get my ass to the hospital and keep showing up and doing what my doctors told me. It all hurts, still, five years later. The financial wreckage is still real, and I’m still cleaning it up. But I’m alive and grateful.
This is the version of positive thinking cancer taught me. Reality matters. You are either telling the whole truth or you are lying. I either have an accurate diagnosis and a careful, well-planned course of treatment, backed by science and concern, or I will die painfully.
The chemotherapy destroyed my veins so thoroughly that we must now take all draws from the back of my writing hand. The hole in that hand is now a scar. The pain in that hand informs my writing. I’m so grateful to be alive, and to be one of the many millions of cancer patients in America who still have a living story to tell. Please listen to us. We have gone where you do not want to go. We survived life before Obamacare. You should not have to. In cancer, and in this political moment, time is of the essence, America.
