This is the second in my series of COVID-19 Narratives, by my dear friend Chris Sciabarra, sheltering in place in Brooklyn, New York. Though the series is primarily about what I called the “supply side” of the health care equation during this crisis, I wanted to run some posts that described the “demand side” as well, that is, what it’s like to be a patient during the pandemic. Particularly valuable about Chris’s post is how it illustrates the implications of the COVID-19 pandemic for people with serious medical conditions whose previously scheduled medical procedures have now been deemed “elective.” “Elective” in this context doesn’t mean “optional.” It means downgraded to second or third priority out of sheer, dire necessity: hospital beds, equipment, and personnel have to be left vacant or unused to absorb the overwhelming crush of COVID-19 patients we expect to see. And even at the center of the pandemic, we haven’t yet reached the peak of that crush.
Meanwhile, people like Chris and many others have to suffer in patient, uncomplaining silence, hoping that their conditions will remain “quiet” for the acute phase of the COVID-19 crisis. I know one person whose elective procedure has been indefinitely postponed, and who was told that she couldn’t receive treatment unless she went into renal failure; on asking what she ought to do about her condition, she was advised to reconcile herself to God’s existence and start “reading the Bible.” Obviously, the people I happen to know are just a minuscule fraction of the numbers out there. I’ve heard people say that they’re “bored” having to quarantine in their house, and that “the economy” can’t wait forever for this lockdown. Such claims are myopic and insensitive in the extreme. It’s patients like Chris and others who face the real trial here. When we ultimately tally up the medical costs of the COVID-19 crisis, we should resolve to remember secondary victims like him–the non-COVID patients whose care has been delayed because of the COVID crisis itself.
Corona-Chaos: A Pandemic from the Political to the Personal
Chris Matthew Sciabarra
This post is not about politics, even if my dialectical sensibility prevents me from looking at any specific problem without considering its relationships to other problems and to the larger system within which they are all manifested, keeping an eye on how such problems first appeared, how they developed over time, and where they might be tending. There you have it—a snapshot description of what it means to be “dialectical.”
But dialectical methods, like all methods of thinking, begin with a consideration of the facts. Another US President from another time, John Adams, once said:
Facts are stubborn things; and whatever may be our wishes, our inclinations, or the dictates of our passion, they cannot alter the state of facts and evidence.
I have to express my total and complete frustration with folks who have been saying to me that this entire Coronavirus thing is “overblown”. For those who believe this, this is probably not the post for you to read. I do not intend to get into any arguments with anybody over whether this is as bad as folks are making it out to be, or how it’s nothing next to, say, the “Swine Flu” epidemic in 2009-2010. Please move on and leave me alone. Your comments are not welcome.
So the first thing I want to address is facts. It was only on New Year’s Eve that China confirmed a cluster of pneumonia cases of unknown origin. It was probably around the very beginning of December that the first cases of what has become known as the Coronavirus disease (COVID-19) was found in Wuhan, Hubei, China. If anybody had ever told me that a little less than four months later, New York City, my hometown, would become the epicenter of what is now a global pandemic, I would never have believed it.
But the virus spread swiftly. Indeed, only a month after China was designated as the country of the virus’s origin, Italy reported its first case, and, today, a mere eight weeks later, 92,000+ infected people in Italy, and 10,000+ deaths in that country of my paternal grandparents, have now been eclipsed by the United States, which leads the world in the number of COVID-19 cases. With over 600,000 reported cases globally, the United States now accounts for over 104,000 cases—with 1,843 deaths reported thus far. But 728 of those deaths have occurred in New York State, which accounts for 52,000 cases, roughly 50% of all the cases in the U.S. Of these, 29,123 cases are clustered in New York City, with the following breakdown in the five boroughs that constitute the Big Apple: Queens has just overtaken Brooklyn with 9,228 confirmed cases; Brooklyn has 7,789, the Bronx has 5,352, Manhattan has 5,036 and Staten Island has 1,718 cases. It has only been 27 days since the first case was diagnosed in this state—and 517 deaths of New York state’s total have occurred in NYC, 209 of them within the last 24 hours.
We have now reached the point where President Trump is considering a quarantine of the tri-state area.
It’s not my intention to debate any of the politics of this right now, right here. But it is my intention to convey the seriousness of this situation by expressing it in the most personal terms possible. This is not something that comes easy to me. I don’t talk much publicly about my own health trials and tribulations. But I’m going to make an exception today—if only because I’ve been inundated with inquiries from so many friends and relatives, with regard to the state of my health and the health of those in my immediate family. I can think of no better way than this post to get the word out about how things are right now, especially since I know that it will resonate with those who have pre-existing medical conditions and who have justifiable concerns about their health in the weeks and months ahead.
As many of you know, I have had a lifelong bout with a serious congenital intestinal disorder, which required life-saving intestinal by-pass surgery in 1974, when I was 14 years old, and which has necessitated 60+ surgical procedures since, to deal with increasingly difficult and complex side-effects from the condition. Have no fear! I intend to be here for a long time to come.
But the Coronavirus outbreak has affected me and my family on a very personal level. I was due to undergo a procedure to pulverize a rather stubborn and large kidney stone on March 13th, but it had to be postponed to March 30th, due to technical difficulties with the lithotripsy machine at the hospital. But by that point, since the procedure was considered “elective” surgery, it was canceled indefinitely. My only hope is that the stone, floating around and growing in size within my left kidney since the summer of 2018, will continue to defy the rules of gravity and stay put—because there is nothing… NOTHING… on earth that I have ever experienced to rival the pain of a lodged kidney stone. And I am a person who has a pretty high threshold for pain tolerance. Nevertheless, on a scale from 1 to 10, the pain level of a lodged kidney stone is about a 13. It’s like giving birth to the Planet Jupiter through a pinhole. Way back in 1995, I suffered agonizing, excruciating pain from a single stone fragment that got lodged in my ureter after a lithotripsy procedure. I was hospitalized for a full week, with routine morphine shots that might as well have been infusions of simple tap water. I had to endure the placement of a stent in me, which stayed there for about a month, before it was removed with the help of nothing but a local anesthetic. I cannot imagine that anything conjured up by medieval torturers could have been worse than that experience; my screams must have cleared out the urologist’s office.
But that was 1995. And this is 2020. And if I can help it, I’m going to will that kidney stone to stay put, so that what is currently considered “elective” surgery doesn’t necessitate an emergency procedure that would require me to go anywhere near a hospital—at a time when the hospitals in NYC are being overloaded by Coronavirus cases. I had two endoscopic surgical procedures scheduled in April, and they too are being postponed, regardless of my wishes, inclinations, or the dictates of my passion.
But I have a GI specialist, who has been at my side for over four decades, and whose home phone number I have, so that if I suffer any complications from my condition, I can call him at any hour of the day or night to address my concerns. This is a necessity at this point, just to avoid, as much as possible, any treks to hospital Emergency Rooms—rooms that I was compelled to visit five times between December 7, 2019 and February 29, 2020 for problems related to my core medical condition.
And not even a half-hour ago, my primary care physician—our family doctor over these same 40 years—called my home, unsolicited, to make sure that I was okay, and to make sure that both me and my sister—who has her own set of long-term upper respiratory problems related to her asthma—were staying put. We’ve also had his home phone number for a long time, and we don’t hesitate to call him whenever we need to. Doctors like these are rare; to me, they practically walk on water.
In the midst of all this, I have to say that I really, really miss my friends and my relatives—those within New York and from out of town—who are all keeping away, because they must. Thank goodness for things like email, Facebook, phones, and other means of communication, which conquer distance and which keep the people I love close to heart.
But I want to remind everyone that, at least with regard to those of us living in New York, nothing will deter us from conquering these hardships. And I wish that same resolve to everybody else affected by this pandemic no matter where you live.
Still, New Yorkers are a tough breed. We got through the nightmare of September 11, 2001. We survived Superstorm Sandy. We will survive this. Because it’s our home and—sentimentality or not—“there’s no place like home” [YouTube link].
We look forward to the time when “social distancing” is truly distant in the rear-view mirror, so that our doors will once again be opened… to share the best pizza, the greatest of home-cooked meals, tightest hugs, sweetest kisses, and all the joy our loved ones have come to expect when they visit the Sciabarra family.
Chris Matthew Sciabarra is an independent scholar living in Brooklyn, New York, and was until 2009 a Visiting Scholar in the Department of Politics at New York University. He’s discussed his medical condition in an interview in Folks magazine.