My daughter Molly was supposed to take the SAT on Saturday, but she is under parent-imposed quarantine right now due to worries about her potentially having covid-19, the disease caused by coronavirus).
She was not able to take the test in December with her classmates because of a sequence of very unfortunate injuries that eventually took her out of school for nearly two months, so she has had her eyes set on 14 March since then. She is a girl who likes making a schedule and sticking to it, and missing the December test date was hard.
I thought missing the test would be even harder. But it was not.
Perhaps the disappointment will sink in later, when she is feeling better. Or perhaps there is some solace in knowing that the entire world has been turned upside down at the moment, not just hers.
And yet, while her friends are relieved that school has finally been closed for a week due to growing fears and precautions related to covid-19, her feeling is different. Because Molly has been sick for nearly a week with a painful dry cough and a fever.
Her fever has generally been low grade, hovering around 100.5. But it has gone higher. And she has had it every day since Monday. The cough started earlier, last Sunday. And it has grown more painful each day.
Those symptoms, not alarming in ordinary times, are cause for genuine concern right now, because they are the symptoms associated with covid-19. I don’t know if she has the virus. We might not ever know, because I cannot get Molly tested.
In New Jersey, Molly’s symptoms are currently not enough to warrant a test. The state Department of Health has approved tests only for those who have recently traveled abroad to the identified high-risk nations or have had known direct contact with someone who has a confirmed case of covid-19. Molly does not meet either of those criteria.
And so, while she goes untested, she has the potential to infect others, including her family. And though Molly has been home, in social isolation, since Monday afternoon, we have not. Like so many other parents with sick kids in these past weeks, I have hesitated to utter a word about Molly’s illness to friends or acquaintances. I have not wanted to cause alarm or panic.
While she goes untested, she has the potential to infect others, including her family. And though Molly has been home, in social isolation, since Monday afternoon, we have not.
To be clear, I have no specific reason to think that Molly has covid-19. And if she does, I am not in a panic that she will not recover. She is 16, and, from what I have heard, the virus has difficulty adhering to the lungs of young people. But I have also learned that things can change quickly in the second week of the illness, and that the damage to the lungs can be permanent.
What’s more, I worry that if she is infected, she may have unknowingly spread the illness to others, perhaps some who are elderly or immunodeficient and could have a difficult time recovering from covid-19. I have multiple sclerosis, which is an autoimmune disease, so I am also worried about my health.
Beyond our family concerns, my broader worry is that all week I have watched people make decisions based on the fact that there had been no confirmed cases of covid-19 in my city. That changed Friday when the first case here was confirmed.
But we have all been watching the spread of the virus across the nation and around the world, and we have all been reading about the alarming shortage of tests in the United States. Yet many school districts have remained open, because shuttering them is not a simple decision: Low-income families depend on schools to provide breakfast and lunch, and many parents do not have alternate childcare. But open schools enable the potential spread of illness from one potentially carrier to the next, to the next.
The leadership in my home of Jersey City has been proactive in preparing for covid-19. This has included setting up a hotline for residents concerned they may be sick. I called the hotline on Friday and shared my daughter’s symptoms, hoping that she might be cleared for a test. At the very least, I want her listed in the Department of Health’s records.
I received a return call from a nurse on Saturday morning, about 20 hours later. In that time, my daughter’s temperature had thankfully all but returned to normal, even as her cough persists.
The nurse advised me to have Molly tested at her doctor’s office. I replied that she had been to her paediatrician but the doctor’s office did not have tests and that no tests are being administered without the approval of the Department of Health. The well-meaning nurse, who works for the Department of Health, seemed unsure about this.
She pivoted and advised me to take Molly to the emergency room. Again, I asked, Will they test her there? Because my understanding is that all tests must be approved by the Department of Health. She assured me, yes, they would test her.
Moments later, a nurse from my paediatrician’s office called to check in on Molly. She listened with incredulity when I recounted the conversation and told me to stay put unless Molly’s breathing becomes laboured or she is not urinating.
Apparently, a trip to the ER will not yield us anything at this point, other than exposure to more sick people. And if Molly is indeed infected with covid-19, she would expose others, who, in the catch-22 created by the stringent testing criteria and scarcity of tests, would also not qualify for testing.
I had cancer when I was very young and throughout my life have had chronic health problems, including multiple sclerosis, so I have spent decades navigating the healthcare system. I’ve become adept at finding competent, compassionate medical professionals, in whom I place great trust.
But what I see is that we are often very bad at thinking about the big picture. The big picture is messy and complicated. It’s easy for a political figure, or even a nurse fielding calls on a hotline, to tell people to get tested for covid-19 and to direct them to their doctors or to the emergency room. But the doctors don’t have tests, and in the emergency room, the sick will be exposed to other sick people and will add their own germs to the mix, only to be sent home because hospitals cannot meet the demand.
Some people might currently be proud of the relatively low — but rising — number of cases in this country without asking if we have all of the information we need. But that pride is foolish. Without adequate information, how can a school district, or even the College Board overseeing standardised tests, make responsible decisions about whether to close its doors? Officials are only operating with the available information, and so Molly’s sister went to school on Friday, along with the other children in this city. The SAT was set to proceed on schedule until the very last minute, after the first local case of covid-19 was confirmed.
Some people might currently be proud of the relatively low — but rising — number of cases in this country without asking if we have all of the information we need. But that pride is foolish. Without adequate information, how can a school district ... make responsible decisions about whether to close its doors?
What is difficult is thinking ahead, protecting each other, and being forthcoming about all that we do not know.
It’s not even so difficult, but it requires that we think beyond what we can see in front of us — thinking about the kind of care that keeps a sick teenager out of the busy, contaminating emergency room, and provides the tests that she needs now in order to keep all of us safe.
Perhaps my daughter’s experiences last fall — when her world was a triangulation of home, doctors and physical therapy — prepared Molly well for the life of social isolation, uncertainty and dashed plans that she once again finds herself in now. Perhaps it puts her ahead of the curve in understanding how to remain calm in the face of the unknown immediate future.
And perhaps it prepared me for the maddening work of safeguarding her health, while trying to appreciate the perspective of her teachers, who are facing other demands, and even of her sister, who has her own set of needs.
I feel cautiously optimistic that my child is on the mend, and that her illness is nothing but a blip that will be behind her in a few weeks. But I don’t know what kind of consequences could await others, including myself, if she has or had covid-19 and may have unknowingly spread it before her self-quarantine. And I know we as a nation can do better.
We must. We have known about covid-19 for months, and infectious disease specialists have offered their expertise at every turn on safeguarding our communities. We had time to secure tests and to set up systems for navigating this outbreak.
So many regular people — neighbours, teachers, small business owners, arts organisations directors, health care professionals, local governmental leaders — are being pushed to the limit while they do the work of calming nerves and adjusting routines to keep covid-19 in check. Perhaps the federal government will follow the example set by people. I hope it does because this is one test we cannot afford to fail.
Ann E. Wallace, PhD writes of her experiences with cancer and MS, motherhood, love and life in contemporary America. You can follow her on Twitter @annwlace409. This article first appeared on HuffPost US Personal.