On March 9, nine days after the first case of COVID-19 was confirmed in New York City, I walked into a meeting not knowing that several attendees had been at a conference that would later be identified as a super-spreader event. I was being extra careful to wash my hands and not touch my face; little did I know that the insidious virus, harmful we were told mostly to the elderly and immunocompromised, was lurking in the air we were breathing. 

Everyone at the meeting was infected with the coronavirus, and one died of it two weeks later.

I had what you could call the “Tylenol and Gatorade” variety of COVID-19. Later on, a friend and I joked that she had the Tom Hanks version and I had the Rita Wilson kind. I recovered at home, in complete isolation for 18 days, watching as the city around me started to burn, the virus sweeping through the metropolitan area like a wildfire. I was scared and I was sick, but I never came close to having to be hospitalized. And I recovered. 

I was lucky. Or so I thought.

Being a COVID-19 “survivor” can be the sort of misnomer that might seem ironic if it weren’t so sinister. It’s been six months since I woke up with the telltale symptoms: 103-degree fever, a respiratory infection, the feeling of an elephant sitting on my chest. It’s also been six months since I’ve been able to exercise. I still experience deep inner-ear pain and excruciating headaches. My vision had been notably worse since I had COVID-19 and, as a professional photographer, my heart sank last week when I was diagnosed with glaucoma—according to the ophthalmologist, apparently connected in some way to COVID-19. 

But I still consider myself one of the lucky ones. My lingering symptoms are a cakewalk compared with most.

We, as a country, are (more or less) tracking infections, hospitalizations, and mortality. No one, though, has kept track of the vast majority of COVID-19 patients who, like me, were left to recover at home. And it turns out that, even by the CDC’s own (admittedly conservative) count, one in three are not recovering in the time expected. 

Now that we know that COVID-19 is a vascular disease, it makes a bit more sense that it ravages every organ system. But what are we to make of these “survivors” who are four, five, six months into their recovery and mere shadows of their former selves? It’s like their bodies have aged decades instead of months. 

I started a grassroots movement called Survivor Corps while I was in isolation, with the mission of mobilizing an army of volunteers to donate their plasma and support science by participating in every medical, scientific, and academic study for which they qualify. My vision was that we, collectively, could help bring and end to the pandemic, with our antibodies and with our blood. So many of the answers to the mysteries of this virus lie in our bodies. 

It never occurred to me that we would have to act as a patient advocacy group, but that’s where we are. And there are a lot of us who need help.

To take just one of the hundreds of examples in my inbox, Dee, 43, from Colorado, says she’s been sick since mid-March. Her husband died of COVID-19, and both of her children have been hospitalized with complications connected to the disease, she explained. She wrote, “I am positive for antibodies and also for tachycardia, brain fog, excessive and prolonged hair loss, blurred vision…. extreme fatigue and insomnia. I have the smell of cigarettes almost constantly (no one smokes in my home), ear pain, a sore/hoarse throat, headaches, calf cramping, and dizziness that has not gone away.”

None of this had to happen. Just as the old maxim said to never discuss politics or religion at the dinner table, we need to separate the scientific process from any political influence by any party. Our health institutions, like the CDC, FDA, and HHS, need to work in coordination, not spend their days trolling each other on Twitter and making decisions loyal to a party rather than the rigors of the scientific process.  Science, and those responsible for its furtherance and dissemination, should remain as sacrosanct as our military. The slightest politicization of either dismantles trust in the entire system and puts lives on the line.

The death toll has already been unimaginable. The toll to the living is ongoing and is turning into a waking nightmare.

We are past the point of litigating what day in March the country should have shut down. What we can do, now, is focus on what we can repair. We have millions of Americans, many of them young and previously in perfect health, unable to resume their lives and desperate for the medical care they deserve. We need to have Post-COVID-19 Care Centers available nationwide, with particular attention paid to those communities that are already medically underserved. Treatment needs to be available to all those affected, whether or not they were able to secure a diagnostic test when they were largely unavailable and often inaccurate, and regardless of insurance coverage or employment status. 

Will a 9/11-type fund need to be set up? Probably. We will need a separate COVID-19 Social Security Disability program to be implemented as “long haulers” are now among the largest groups of disabled people in the country. Laws will have to be rewritten. There isn’t even a billing code for Post-COVID-19 care. We deserve better and we can do better.

When it comes to COVID-19, “recovery” means simply that you are no longer contagious. The word adds insult and injury to all the long haulers who haven’t even begun to recover. We are staring down the face of a public health fiasco that could last decades; we haven’t even started to research the possible long-term impacts the virus has had on our children’s bodies.

We are asking a lot of the medical profession. We know you have been drinking from a firehose since last winter, but we will work with you. We will work together to create the research so we can learn together and ultimately rebuild together. Too much damage has already been done. It’s time for the healing to begin.

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