BmoreArt

I wake up with a fever of 102 in the middle of a global pandemic. It doesn’t take a genius to figure out that I should immediately be tested for coronavirus in order to protect myself and help stop the spread of disease, but this doesn’t happen. After two weeks of fevers, pneumonia, and hospitalization, I am finally tested, but receive no results. At this point, I don’t need a test to tell me that I have Covid-19 and my experience suggests that thousands of very sick people are in the same predicament, suffering from a brutal viral infection with inadequate medical intervention and left out of official head counts. We need more information, more data, more accessibility to testing and health resources in order to protect ourselves and others from this deadly illness and it’s not happening.

My initial symptoms are insignificant. My head feels warm and buzzy. Is this a hot flash? Am I sick? I’m fine. I haven’t travelled overseas. I haven’t come into contact with anyone who has tested positive for coronavirus. Maybe I’m just having global pandemic anxiety that is inducing a physical reaction? Maryland has just closed schools and encouraged people to stay at home and social distance, and my son and I take walks around the neighborhood with our dogs.

On Sunday, March 15 I feel worse, but not terrible. I conduct a phone interview with an artist friend living in Italy, trying to understand what may be coming to the US in a week or two, and we publish it the next day as a dire warning. My body feels off, but not that bad. I suspect a fever but none of our thermometers are working. I spend an hour combing through our bathroom closet, throwing away dozens of expired medications. My husband orders batteries for our digital thermometer from Amazon, because  there are no thermometers in stock at any of the drug stores near my house.

On Monday I officially have a fever of 102. The batteries have arrived. I shiver, sweat, and ache in every bone and joint. I have no appetite, no sense of taste or smell. I am so tired I stay in bed all day. The only escape from this misery is sleep. I call my primary care physician, who is not doing in-person appointments and has switched his practice to phone triage to accommodate more patients. He asks me if I have been out of the country within two weeks (I hadn’t) and if I had come into contact with anyone who had tested positive (nope). He asks if I have a sore throat, cough, or shortness of breath, the primary symptoms of coronavirus besides a high fever (I do not). I ask if I can have a Covid-19 test, in order to protect my family and those I have been in contact with and am shocked to learn that I do not qualify. 

I am flummoxed. In the middle of an exponentially expanding outbreak, when thousands are dying daily, and the only tool we have to track and contain this virus is a test, a person with a 102-degree fever does not qualify? What kind of absurd, dark comedy am I living in? My doctor explains that unless I were elderly with symptoms or could prove contact with someone who tested positive, I cannot get a test. My instructions are to stay at home, hydrate, take Advil or Tylenol for the fever, and rest. I agree to call my doctor if my current symptoms worsen or if I develop respiratory issues, but there is no discussion of the possible progression of maladies experienced by those with Covid-19, the fact that symptoms change every few days, or what kinds of medicine I should take should my condition evolve. 

My husband moves into the guest room and forces me to drink Pedialyte several times a day, which is disgusting but I can’t taste it anyway. I sleep for several days, rarely getting up, and when I’m awake, I read articles that infuriate and terrify me about Covid-19 symptoms and our government’s lack of a coherent response. I think I’m getting worse, I tell my husband. He tells me to stop reading the news. 

At this point, it is just the beginning, but I don’t yet realize it. It has been several long days with coronavirus symptoms and I’m living every second in a bizarre purgatory of fever, chills, guilt, fear, and the frustration of not knowing if I have it or not. 

I wake up on Thursday to a flurry of texts from friends and colleagues. Am I better yet? How am I doing? Have I gotten tested? Have I talked to my doctor? Have I seen the latest idiotic thing our president has said? Do I still have a fever? 

It feels like a personal failure to tell all of them that, no, I am not better and yes, I still have a fever. American capitalism has trained us to think we have control over our lives and livelihood to the point where even serious health issues are seen as a mind-over-matter problem to be solved quickly, and I think the coronavirus pandemic has proven this as a complete fantasy. We are not in control and we are not prepared and the US healthcare system—or industry, as it actually is here (there are shareholders and payoffs, are there not?)—is not set up to care for people when they need it the most. 

I wait until Thursday at nine to call my doctor the minute the office opens. My sickness has gone respiratory, I tell him, thinking that now I will finally be tested. I have shortness of breath and a cough in addition to the fever, which shoots up every time the Advil wears off. I am weak with no appetite, and no sense of smell although my nose isn’t clogged. I am shocked that I still do not qualify for a Covid-19 test. It has been five days with fever and every single symptom except a sore throat. My doctor explains that as long as I’m not wheezing or feeling like I can’t get enough oxygen, I do not qualify for a test. 

On Friday evening, I become more and more terrified by my shallow and rapid breathing. I had taken a break from reading the news, but found a helpful triage site made by a group of doctors that suggested those suffering from coronavirus symptoms take an expectorant and decongestant to help with breathing. Within a few minutes of drinking the most disgusting battery acid pink liquid (generic Mucinex), my breathing calms. I still can’t take a deep breath, but it’s better. Whew. Reading about all those Italians suffocating in their own collapsed lungs does not help my mental state, but in this case the fear is warranted. I continue to take an expectorant and decongestant every four hours, and I can tell as soon as it leaves my system because my breathing becomes ragged again.

On Sunday, March 22, eight full days since I first fell ill, I awake to a splitting headache and feel a shortness of breath coupled with a new dizziness. Am I getting worse? Or is my body extra tired from fighting this thing? My doctor’s office is closed so I call and leave him a message. 

My husband and son are still asymptomatic. For more than a week, I have been a non-parent, almost a non-human in my own home. Every day they take long walks with the dogs, ride bikes, read books, play video games, watch movies. My son understands that he cannot play with the neighborhood kids and hasn’t complained about it, so I appreciate that and wonder if he is secretly terrified. I worry that the two of them will get sick, and this fear is worse than anything. 

I go back and forth about my symptoms, waiting for a call back. Should I harass my doctor to get the test so that I have irrefutable proof that I have it? Is it my duty as a citizen to be counted and added to the numbers so that doctors can do proper research on this pandemic in my community? If I can get approved for a test, do I have the strength to drive myself to a parking garage to wait in line for hours for a nose swab? And what do I do if my lungs get worse? Should I go to an urgent care health clinic or to the hospital and risk exposure to all kinds of germs? How sick is sick enough to go? How the hell is staying at home with zero medical intervention the best healthcare one can get during a global health crisis? I remind myself that I am one of the lucky ones who can breathe and whose family is healthy, and I just need to focus on getting better, little by little. I calm down.

Anyone who enters my room is encased in a yellow plastic gown, plastic face shield, and respiratory mask. Their outer layer is shed every single time they leave. By the end of my stay, there are two large trash cans overflowing with these tainted outer layers. They cannot take my germs with them into the rest of the hospital. I am contagious, potentially deadly to them, to other patients, and to those they love.

After three days my breathing begins to improve, and my doctor and I discuss an exit strategy. He tells me there are dozens of other patients in the hospital waiting for Covid-19 test results and that the federal testing program says it will take 6 to 8 business days to get the results back. My test has been sent to a CDC testing facility in Pennsylvania, and then to New York. He explains that there is a high rate of false negative results with these tests in particular, but almost no false positives, and that he has learned this from conversations with other health professionals across this country. What this means is there are a lot more people with coronavirus than what is being reported, even among those who meet the restricted qualifications to be tested. I realize he is preparing me for a false negative test result, even though from my symptoms it is clear that I have Covid-19. He tells me I am potentially contagious for two weeks after my last fever, and instructs me to behave as though I have received a positive test result no matter what.

On Wednesday, March 24 I am discharged from the hospital. It’s cold and drizzly and surreal as I walk to my car, still sitting in the ER parking lot, which is still mostly empty. I look forward to sleeping in my own bed, and my husband and I have hatched a plan for me to quarantine in our bedroom with the dog, and for him and my son to essentially live their lives as far away from me as they can in the same house for the next two weeks.

I am still exhausted and have no appetite. I am getting migraine-level headaches every afternoon, but I can inhale completely, with just a small amount of coughing. My pneumonia is on the mend. This time, I know better than to expect a speedy recovery. Covid-19 lingers and changes, flickers away and returns with unexpected force. It is brutal and almost calculating, and this fluctuation in symptoms and false sense of improvement encourages its spread. 

Two days later, people want to know if I am better yet and are shocked that I still haven’t gotten my test results. I’m better, but I’m not well, I respond. No results yet, I say. My regular doctor calls me to check in and tells me he was told 8 to 10 business days for my results. The CDC is experiencing a backlog and can’t keep up with the testing and he confirms that there is a high number of false negative results with these particular tests made in the USA. I am still experiencing extreme fatigue, headaches that show up each afternoon, but no fever. And I can breathe again.

At this point, if I receive a negative test, it really doesn’t matter. It’s not as if I would suddenly open up my doors and hug my child or make out with my husband or go grocery shopping. Can you imagine a single human acting this way after going through all of this? No. It’s clear that I’m not OK. It would be irresponsible to everyone I know and love, and disrespectful to all those healthcare workers at the hospital, to behave in any way that does not reflect that I have Covid-19.

When I get my test results, I will announce it publicly, but the truth is they don’t matter. My experience is proof that our healthcare system does not function in a responsible way and that people are dying as a result. It is dangerous for anyone and everyone to go outside. We are not testing even a fraction of the people who should be tested for Covid-19 in order to have accurate data and, of those tested, there are a high number of false negative results. This means we have potentially thousands more individuals who have coronavirus in our region alone, and our health response is inadequate and ill-informed, with individual hospitals, doctors, and healthcare workers bearing the brunt of this crisis. These people are my heroes.

At this point, I am pretty sure that I am on the mend, although I am fearful that my symptoms may return, based on what I’m hearing from others with similar symptoms, who report the return of fevers, after having a normal temperature for days. I received excellent care from St. Joseph’s hospital and from my regular doctor who is doing the best he can within a dysfunctional nightmare.

We all have an opportunity to make our voices heard and to demand that our government and the media, which continue to spread misinformation via White House briefings, take our demands seriously. We can write. We can tweet. We can choose not to watch those bogus performances. We can stay home and wash our damn hands. We can vote in the primaries and in November. And we can support the local businesses and organizations we love now so that they still exist after this crisis is over.

No one is coming to save us, especially not the federal government. We have got to educate and save ourselves, to support one another, to take our own health concerns seriously, and to demand a health care system that serves and protects everyone in the future.