#Mom who chronicled COVID-19 battle says virus may have given her glaucoma

When I got COVID in March, I was stunned because as an extremely healthy 45-year-old I hardly thought I would be among the first New York area diagnosed with a respiratory illness that I thought was only supposed to badly affect the elderly and the immunocompromised. Everything about that assumption turned out to be wrong.

You don’t need me to tell you that we are all vulnerable to the virus. As New Yorkers we wept as we lost loved ones through March and April as the virus tore through our city; we’ve all read the obituaries and know the horror stories of parents losing children and children losing parents.

And I learned the virus brought more rocky ups-and-downs than a case of the flu. I experienced the mornings that would start of fine but then turn into afternoons of dread, labored breathing and soul-crushing headaches.

But when I recovered I scampered out of my bedroom where I had spent 18 days in isolation, into the warm hugs of my family, I thought I was finished with the virus. After all, I had finally tested negative for the virus and positive for the antibodies. I just assumed, like the flu, it was over.

My stomach continued to bother me but I was determined to gain the weight I had lost (words I never imagined uttering) and the strength that had left me unable to exercise. Once known for outlasting brides and grooms at their own weddings, I could barely stay awake until 9 p.m.

It’s been six months; I still can’t stay up past 9 p.m and I can’t exercise at all, once a part of my daily routine. Shadows of my acute symptoms have returned in recent months, like waves. Severe nausea, deep inner ear pain and headaches come and go; each morning it feels like I am reaching into a shopping bag to pick out the symptom of the day.

The nausea was so unrelenting, at one point, I went to urgent care for a prescription for anything that would take it away (I had never experienced nausea other than during pregnancies and that didn’t hold a candle to this); I presented as so symptomatic that, despite my pleas, they insisted on giving me a COVID test.

Knowing it would be negative (yes, there have been a handful of reinfections but they have been so few and far between what would the chances be?) I requested an antibody test too. As expected, the diagnostic test was negative and despite the persistent symptoms, my antibodies remained high.

That blurry vision has been upsetting; I was a professional photographer until I got COVID and always took pride in my eyesight. I had recently gone for a full eye exam with all clear marks before COVID. As one of the extremely lucky ones who was able to get into Mount Sinai’s Post-COVID Care Center, I went to an ophthalmologist last week who diagnosed me with glaucoma.

I would say I am devastated but it hasn’t really sunk in yet. I also met with a GI specialist who diagnosed me with post-COVID IBS (which I interpret to mean, they had no idea what was wrong) and a physician who ordered an MRI of my head.

The medical community is stumped, but they need to start taking “long COVID” seriously and acting. We, as patients, will guide them. If we are going to be guinea pigs with a novel virus, let us help pave the way towards recovery.

One of the other misconceptions we had at the beginning was that this was a respiratory virus. Now that we know it has more to do with the vascular system, we are starting to understand why it is ravaging every single organ system.

I started a grassroots COVID movement called Survivor Corps that now has over 100,000 members. When I spend time on those pages I realize that I among the lucky ones; so many people who had mild to average “Gatorade and Tylenol” versions of COVID like mine are not recovering. The CDC estimates one out of three patients don’t recover quickly and we have already skyrocketed past six million infections nationally. You don’t need to be an epidemiologist to do the math and see that we have a public health crisis looming behind the one we are actively fighting.

In Survivor Corps we have members in their 20s who were marathon runners and are on month five of having a fever every single day and cannot walk up a flight of stairs. We have young previously healthy men (but mostly women) living the lives of the elderly. Every movement hurts; every doctor’s appointment results in a new diagnosis. Extreme neurological symptoms are leaving people with brain fog, unable to find their words. And it is safe to say that every single person will say that their mental health has suffered.

COVID is stealing away from these people their prime years. We need medical research to move, at warp speed, to come to the aid of COVID survivors. Rather than gaslighting them with diagnoses of anxiety (really, who isn’t anxious these days?) take long-haul COVID sufferers seriously. Post-COVID care centers need to be established nationally. And please know that this is not just a matter of the flu or ending up on a vent. There is a very large bucket in the middle, where I am, where you don’t want to be.