Undo the Sunset
by Debrianna Mansini
“Undo the sunset,” my dear friend said softly.
“What …?” I asked.
“Undo the sunset,” he repeated.
“Oh, Paul, it’s only 10:30 in the morning, it’s not sunset time,” I replied, not certain that is what his cancer ridden brain was asking of me.
“UNDO THE SUNSET,” he insisted.
“Oh…oh…do you want me to open the curtains?”
“Yes,” he said.
This was an exquisite moment in the recent passing of my beloved friend, Paul Parker. In this piece, I wanted to talk about what an extraordinary human he was, and about the incredibly magical moments we savored in his last days, but that may be a story for another time. I long to tell you about his remarkable life that we, his close friends, describe as “Forrest Gump was based on the life and adventures of Paul Parker.” But in THIS time, in THIS era of a foul regime, it is of utmost importance that I recount the inequities that exist when our loved ones are sick and/or dying.
Death is hard to talk about in our culture. The rule is once we are here, no one gets out alive and yet…yet no matter what race or sex we are, what religion we do or don’t believe in, we ALL are going to pass and no one talks about it openly in this country. IF we pass from an illness and not an accident, we all will need to use the system. The same system that allowed U.S. (R) Rep Kean (NJ) to take four months off from his job, keep receiving his pay check AND use and keep an insurance policy to which most American have no access. Not to mention, no one I know could take four minutes off from work, let alone four months. This is the same system Mitch McConnell enjoys, while he stays in a hospital under care for months, when WE would be subject to being kicked out.
“He’ll be discharged tomorrow,” they announced, after four days and an untenable diagnosis that left my friend with growing brain tumors that caused confusion, a ragged injustice for one of the smartest, most curious minds I have ever had the good fortune to know. And that started the insanity of nursing homes, hospice care, what will insurance and medicare pay for, and what astronomical bills may lie ahead. To say there was little to no help navigating the merry-go-round of care would be kind. We, a group of five smart people, couldn’t even get a clear answer as to what freaking time he would be discharged. To say the hospital care was… inconsistent, depending on luck of the draw for which nurse you had, would be generous. No one could answer simple questions. No one. When they did, it was often with complete disregard to the patient.
“I can’t tell you when he’s going to die. Could be tomorrow, could be a month from now,” the attending doctor shouted into the speaker phone he insisted on using, standing next to the bed of my sick friend. I wonder if Mitch McConnell’s doctor is yelling that at his bedside…Wait, no, I don’t, because as soon as our lawyer friend walked in, Paul’s dear buddy who came to see him, that doctor’s attitude did a one-eighty. And oddly, everyone else who worked there suddenly knew exactly how to do their jobs. We suddenly knew the precise time he’d be discharged and we miraculously got a one day extension to help us organize how we could take him home for his remaining days. Somehow, they found a way around the insurance and hospital cruelty-for-profit regulations, so we could give Paul the care he needed and deserved.
The depth of the anger I feel toward a healthcare system that harms instead of serves cannot be described adequately. It lives in the way back machine of my mind, before Obamacare, when my sister was held hostage in a marriage she wanted desperately to end, but couldn’t, because her husband’s company carried their health insurance, and she had a pre-existing condition of breast cancer and would have no access to new insurance if they divorced. People were hostages to jobs and bad marriages back then FOR HEALTH CARE. We have progressed past that, but seriously, only barely. Paul had been hospitalized shortly before his terminal diagnosis for five days. Complaining of confusion, he drove himself to the hospital, where they treated him for a UTI and released him back into the wild, still confused. We had no idea how he got home and neither did he, but his car was left in the parking lot for days before his brother, his only next-of-kin from across the country, was notified. That’s when our journey began. Shorter from beginning to end than Mitch’s current stay that we are paying for. Far shorter than Kean’s absence from work for his treatment and care. And god only knows how many of us will get shoved into the oblivion without smart folks or lawyer buds there to help.
All that said, I am grateful that we live in a state where the right-to-die is able to be done with dignity and care. If you are fortunate enough to make it home, and you have the ability to ask with lucidity, you can pass with agency, without three doctors and weeks in between from your request. Many states require huge hurdles, like psychiatrists, if it is allowed at all. As heartbreaking as it is to lose a loved one to the ravages of cancer, it is beyond sacred to help them pass at their own discretion, in their own way, and in their own time. We were able to sing Beatles songs, tell jokes about Paul’s remarkable life with him, and hold a space of love as he moved to the next adventure. He actually died with a smile on his face. I will never forget the experience he shared with all of us, who were there to witness his transition.
What I would like to forget is the way we and he were treated in this abusive health care system. We need to change. We need to be active. This Republican Congress wants to steal from US what is rightfully ours, while they keep the spoils for themselves and the rich. WE can’t let them. Please, be pro-active. Be informed. And for god’s sake, work and vote for Democrats, period. We need the numbers to achieve the ability to make the changes WE want, the changes that will bring us to the standard of health care that every other industrialized country in the world enjoys. The same kind of nationalized health care that 47 of the 48 countries competing in the World Cup already have. (Yes, we are the only country without it.) Vote, then get loud. It’s the only way.
Do it for the Paul in your life.
Watch or listen to Debrianna reading Undo the Sunset:
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Thank you for r this, from one of the five. 💔
Dear Debrianna - I so feel for your experience with our treacherous healthcare system while simultaneously fighting for the dignity of your friend and grieving your own loss of a loved one. I too have needed to express my dismay at the bureaucracy and wrote to every single one of my representatives about it, including our district attorney. I have no idea if made any difference, if any of them read what I wrote but you’re right—we must express our dissatisfaction with the status quo or nothing will ever change. If enough of us write about these injustices, maybe, just maybe we can affect legislation that will protect us and the medical industrial complex will once again work for the good of the patients and their families rather than the profit-takers. You’ve written a beautiful piece here - send it far and wide, and consider an op-ed in our local newspapers. The more people who say - hey, that happened to me too - they feel strength in numbers building, and perhaps they’ll feel more empowered to express their need for change too. Thank you for helping Paul, and for writing this. I’m looking forward to reading the piece on your celebration of his life.