Editor’s Note: Lauren Calihman lives in the Riverdale section of New York City. She was previously a field organizer for Hillary Clinton’s 2016 campaign. The views expressed in this commentary are her own. Read more opinion on CNN.
“That sounds kind of fun. Can I tag along?”
“You mean you want to bat mitzvah crash?” my friend replied.
“Yeah, why not?” I responded, revisiting the kitschy yet sanctified rites of passage that punctuated my adolescence.
And so that early March afternoon, in a stunningly decorated space nestled in the woods of Westchester County, we celebrated a girl’s symbolic transition into womanhood.
But what had been a blithe, plus-one adventure soon became a lengthy quarantine at the epicenter of a national public health emergency – and one for which hard-fought testing came about two weeks too late.
As the experts have told us time and time again, one of the only ways to stave off widespread societal devastation is for testing to be readily accessible. My saga proves we are far from achieving that goal.
A party with an unfortunate twist
Several days after the bat mitzvah, New York’s second case of novel coronavirus would emerge in New Rochelle – the very same city that was home to most of the party’s attendees and the very same city that would soon house a containment zone. At the time of the event, coronavirus was new to the United States – a fearsome threat in Washington state that might eventually make its way east.
At the event, many tables were outfitted with Purell, and there was a sense that people were being a bit more contemplative about contact and hygiene. Nevertheless, people still mingled and noshed and held hands to dance in the concentric circles typical of any Jewish affair. And that was fine, because no one in New York state was known to have Covid-19, and the local risk wasn’t yet palpable enough to warrant cancellations and social distancing.
As we know now, the problem is that the specter of coronavirus is not only about you – it’s about everyone around you. Days later, I was in disbelief when I heard that a New Rochelle man had tested positive. But he wasn’t at the event, like so many of his friends and neighbors, so we were alright, right?
One week later, after a full week of work, volunteering, Bikram yoga and life in general, I learned that at least five guests had tested positive, and that the Department of Health was encouraging everyone present to enter a precautionary quarantine for 14 days.
I had been concerned since the New Rochelle news broke, and by the end of the week I had started to feel a little off, enough to seclude myself at home. So, by the time the news of the New Rochelle quarantine reached me, I was unsurprised and, frankly, expecting it.
More concerned for older relatives’ prospects than my own, I unreservedly accepted the mantle of quarantine, and withdrew from professional life (without paid sick leave or telework) and listened to the television experts’ vague directive to “hunker down” as I considered the irony of contracting a deadly virus at a kids’ party I wasn’t even invited to.
The struggle to get tested
Like so many Americans, I lacked confidence in the government’s preparedness, particularly since Vice President Mike Pence had failed to produce the roughly 1.5 million tests he had promised by the end of the first week in March.
My first call was to the Westchester Department of Health, which informed me that quarantine meant staying inside, all day, without exception, unless seeking medical treatment. It also meant no visitors – friends or family. Much to my surprise, the DOH was accessible, knowledgeable and responsive in recording my information and symptoms, and in scheduling a home testing visit within 48 hours. It was almost too easy.
I waited, confident that the DOH was working its way over. Above all, I was grateful to be quarantining at home, and not in a ship cabin sepulcher, like so many Americans aboard the Diamond Princess. My contentment dissipated after 48 hours lapsed without a visit or a word of explanation.
I followed up with the DOH, and instead of the hopeful assurances I received the first time, they informed me that I was now low priority, a level six out of seven, and that they could no longer specify if and when they’d come to test me. I was happy to have the government attend to higher-priority individuals first, but at the same time I was now nine days out from exposure and felt it was important that I understand my status and its implications.
Tired of lying in wait, I tapped into my political acumen to see if my local representative, Assemblyman Jeffrey Dinowitz, could advocate on my behalf. I received an eager, proactive response from one of his staffers, who referred my case to Gov. Andrew Cuomo’s office, and indicated that I would hear back that day.
Well, I didn’t hear back, and the night proved dramatic as Tom Hanks announced that he and his wife, Rita Wilson, had tested positive for coronavirus. My quarantine was due to end in a few days (two weeks since exposure and one week since quarantine), and time was running out.
I awoke with the fiery resolve of Erin Brockovich. Every hour, the news reported new cases in New York, so people were getting tested somewhere, but I hadn’t figured out how. I called my primary care physician, who was referring all Covid-19 inquiries to the ER, though the federal government was urging people to avoid making unannounced visits to the ER.
I then contacted my state senator, Alessandra Biaggi, and one of her senior staffers gave me the invaluable tip that a local clinic was testing. Since the DOH had ostensibly scrapped house calls and ghosted me, this seemed like my best bet.
Per quarantine protocol, I called ahead and was told that I might get a test if I “qualified.” Five days since I had seen the sun, I packed my bag with an array of disinfectants, wrapped a bandana around my face and embarked on a 40-minute walk to avoid exposing anyone via bus or taxi. It was then that I walked through a waiting room of blue masks and experienced one of the most crushing moments of this experience, a moment that truly embodied this saga.
A kind physician, suited up in several layers of protective gear with a plastic shield across her face, examined me and said, “I disagree with the DOH. I don’t think you’re low priority; I think you’re high priority. I would like to test you now, but I can’t, because you don’t meet FDA and DOH criteria.”
These guidelines specified that in order to qualify for a test my body temperature had to be above 100.5 degrees, and that my blood oxygen saturation had to be below 95%. Well, my temperature was 98.5, and my blood oxygen was 99%, so no dice. Given my symptoms, comorbid asthma, negative flu test, and early exposure at New York’s Covid-19 ground zero, she even made an unsuccessful appeal on my behalf.
The doctor instructed me to add a week to my quarantine in the absence of a test and to call back the following day in case regulations loosened. And thus, 11 days after exposure, I came within reach of a critical test – until red tape barred a willing physician from administering it. Just because you can find one, doesn’t mean you can get one.
Unwilling to quit
Please understand that nearly every public servant and healthcare provider offered me dizzying, and often conflicting, information. Just that day, local government had suggested I go to my doctor, my doctor had referred me to the ER, and the federal government was discouraging many people from rushing to the ER.
At the same time, I cannot deny that everyone involved is well-meaning, overworked and struggling to demystify ever-fluctuating guidelines. Not exactly a best-case emergency management scenario.
I walked out and, unwilling to quit, I checked back in with my assemblyman. This time, two senior staffers informed me that current protocol dictated that constituents petition their doctors for tests, an unsatisfying piece of advice that suggested the state government was passing the buck back down to lower echelons. These staffers recommended they conference in as I called my primary care physician again, which sadly accomplished nothing beyond hearing a doctor’s frustration at the absence of resources and protocol.
She told me that a colleague of hers, a pregnant doctor, had been denied a test when she went to the ER with severe Covid-19 symptoms. As healthcare providers, these people had no idea how to access testing themselves, and they were exasperated.
When I returned to quarantine, I scanned the wasteland of Post-it notes that littered my desk with names, numbers and half-baked instructions of every stripe. I gave the DOH hotline another shot, just to speak with an emotionally threadbare representative who told me that the case I had opened in the beginning was inactive and inaccessible, and that it sounded like I had the flu (despite my insistence that I had tested negative hours earlier).
The next morning – Day 6 of quarantine and 12 days following exposure – all of these maddening efforts started to build momentum. “Enough already,” I was told Dinowitz had said when he personally placed a call to the governor’s office demanding a test.
A friend on Capitol Hill connected me to someone in Sen. Chuck Schumer’s office. Another offered to connect me to Rep. Eliot Engel (D-NY), and Albany was finally calling me back. However, the act that surpassed these efforts to navigate the American polity was just a simple, unexpected phone call from the physician who had denied me a test the day before.
On her day off, she called to tell me that she had been thinking about my case all night, and that she wished she had silently defied the rules to test me out of principle. But that didn’t matter anymore, because the criteria had indeed loosened and I finally qualified! I rushed back to the clinic on March 13 with the air of having traversed a battlefield, brutalized, but not defeated.
Success comes at a cost
“Out of the 30 patients I’ve screened for coronavirus today, you’re only the second person that I think actually has it,” my new physician stated.
My heart rate was elevated, indicating a low-grade fever that I had not detected at home. When he listened to my chest, my right lung sounded dyspneic, labored and deprived of air.
“Are you sure you don’t feel short of breath?” he asked.
“I guess I didn’t realize until now,” I replied.
I had been so immersed in my mission, and so accustomed to respiratory abnormalities as an asthmatic, that I hadn’t even noticed that my breathing was impaired. Then, in a moment I hardly believed had arrived, he performed the test, an uncomfortable but quick procedure in which he inserted a thin, pipe cleaner-like nasopharyngeal swab through my nose, into my throat.
I won’t receive results for five to seven days. By the time I receive them, nearly three weeks will have elapsed from the time of exposure, and nearly two weeks from my first attempt to be tested. Given the exponential rate with which this virus has overtaken the globe, this is an unacceptable and positively dangerous amount of time from the perspective of containment and “flattening the curve.” If I prove to be positive, three weeks is ample time for the virus to have spread from the few people I may have exposed to hundreds or thousands more.
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This experience has taught me that we, as individuals, are not always attuned to our bodies or capable of accurate symptom assessment without professional input. Moreover, I learned that there appears to be no singular being or body that’s truly in charge on the ground, and there’s no foolproof protocol.
In the meantime, each affected individual must demand personal attention and systemic reform so that we can make our best play for catch-up containment. Reach out to the officials who represent you, lobby them, turn up the heat and see what they can do for you. After all, you elected them, they are beholden to you, and they may even care about you and want to help.