NORTH FORK, NY — It has been months since a North Fork woman — who asked not to be named for fear of the stigma and future potential impacts on her health benefits— was diagnosed with the coronavirus. But today, her life is a nightmarish version of what it once was, so drastically altered from the existence she once knew that there are moments she feels she cannot go on.
She's what's known as a "long-hauler" and her story echoes the words of many who say they are living in the shadows, struggling to get by as the specter of the coronavirus lingers.
On any given day, she puts bread in the toaster and then turns away and forgets that she's done it. Minutes later, smoke is billowing in the kitchen. She stops, mid-sentence, losing track completely what she's said just seconds before. And her days are filled with a long list of symptoms, physical ailments that continue to linger, months after the initial battle with COVID-19.
Back in February, she said, she was one of the hordes rushing to stock up on disinfectant, wipes, toilet paper and frozen meats and vegetables. She was one of the many who was confused, frightened, panicked by the unknown.
"We didn't know anything," she said.
With elderly parents, the fear was real, she said.
She's not sure where and when she contracted the coronavirus, whether at the store or at the hospital, where she'd gone for X rays for an unrelated issue.
One day, she said, she was talking with a friend, when "what sounded like kennel cough came out of my mouth, without my even knowing it," she said. "I said, 'I have COVID.' She told me I was paranoid. I said, 'You don't understand. That cough, I never had that cough before.'"
She told a relative that she thought she had the coronavirus and he, too, said she was overly concerned, adding that it was probably allergies.
That was on a Sunday, she said. By Monday, she had a 99.9 degree fever; her fever never went higher than that, in all the months that followed.
By March 16, she tried reaching her doctor's office, but he had closed the office. And there were no coronavirus tests to be had at the time, she said. "It was so limited then," she said. "Everything was so new."
At first, she said, while she was a little frightened, she told herself not to worry until she had something to worry about.
"Then, I started to feel like roadkill," she said. "All I wanted to do was to sleep. I isolated myself upstairs and I thought I was going to die. This disease, it wants you to rest."
Others she knew, she said, fought the coronavirus, but she was so exhausted, she couldn't, and that's why she believes she has lingering symptoms today.
There were no pre-existing conditions; she had only borderline high blood pressure, she said. "I had a fever for four days and I felt awful, but then, I started feeling a little bit better. Then, all of a sudden, came this full-fledged cough. Everything hurt, my heart, my lungs, my stomach. And there were no doctors available. It was horrible."
When she tried to be tested, with only a 99.9 degree fever, she didn't immediately qualify, she said. "Then one morning I woke up feeling like there was an elephant sitting on my chest. I couldn't breathe."
Thankfully, she was able to reach a tele-health provider, who ordered an albuterol inhaler and four pills of Dextramethasone.
"My other choice was calling 911 and going to the hospital — and I was so afraid I was going to be intubated," she said.
The medication began to work and her airways began to open, she said.
In the days that followed, she realized that stocking up on steak and frozen food meant nothing when she needed soup, saltines, and orange juice.
Eventually, the vicious cough subsided but then, she lost her sense of taste and smell — and seven months later, they have not returned.
Today, she's plagued by long hauler symptoms, by brain fog, debilitating memory loss, by confusion and a litany of physical symptoms.
"I could get up to get a glass of water and end up with a cookie because I don't know why I got up in the first place," she said.
She loses her breath when she tries to walk around the block and has lingering heart and breathing issues. She is grateful not to have blood clots in her lungs, but she suffers from stabbing pains in her hands, legs, and ankles. "It feels like someone took an axe and cut off my limbs," she said. "You want to throw up because the pain is so incredible."
She's finding it difficult to work. "I used to multi-task. Now, I feel like a loser."
In the days since the diagnosis, she's begun seeing a neurologist and exploring holistic treatments.
And what she's learned, she said, is that she is not alone. She's met others waging the "long hauler" war. "I've met other people in my boat who were just as terrified and living this nightmare," she said.
But few share the details of their stories, she said, afraid of the COVID-19 stigma as well as future repercussions, should the coronavirus be labeled a pre-existing condition. "I need my health coverage," she said.
She first learned in April that she had the antibodies for the coronavirus, she said.
Describing her experience, she said: "You have a whole host of different emotions: Frustration, depression, terror, embarrassment."
And there is the anger, especially when reading the backlash agains coronavirus protocols on social media. "You just want to say, 'Wear a mask, this is real. Don't tell me this isn't real. I didn't do anything to deserve this.' And yet, there are people who don't believe you, who say it's a hoax. This is real. But anytime you say anything on Facebook, you are attacked by those who think it's a hoax."
Another reason she's not told her story before is she's fragile, emotionally, and she can't handle the abuse mentally of public backlash.
Being a long hauler, is worse than anything she's experienced, she said.
"There are some days when I think, 'I don't want to do this. I don't want to live this way. I'd really rather just drive my car into an 18-wheeler on the highway and call it a day.'"
Once adept at her high-powered job, now the simplest tasks, those people take for granted, are all-consuming. She no longer has the energy or desire to be the overachiever she once was. "You lose that," she said.
She passes North Fork farm stands and can't smell the donuts or the scent of sweet flowers. "You go into a candle store and something has a scent and it's just blank. I can't smell propane. My house could burn in the middle of the night, and I wouldn't know. I feel like a blank piece of paper. There's no color left in my life."
There's a need, she said, on the North Fork for a support group, "for anyone who is suffering from COVID, where they can share their experience without being bashed, belittled or told we're crazy. We're not crazy."
And yet, despite the hell she's enduring, she said she sees photos of crowds out at bars, not social distancing, with no masks. She feels betrayed by the elected officials she said have not been there to help those hit the hardest.
But despite the anger that builds, she can't speak out. "Our society has become very divided and hateful. Right now, you can't say anything," she said.
She is grateful, she said, for neighbors who took the time to look through the window when she was most sick, asking if she needed groceries. "If it weren't for those two people, I probably would have died in that house," she said.
Struggling with coronavirus, she said; "You feel lonely. Isolated. Scared. You feel dirty. You don't even know if you are going to live."
Even today, her heart rate spikes; she's now immune compromised. And no one knows what the long-term impacts will be down the line.
"Other people are out there, going on with their lives. But we are left," she said. "And nobody cares."
Today, she can't drink any cola-based drink, anything made with lemons, or coffee. And now, even toothpaste "feels like acid, like washing my mouth out with Drano," she said.
With no sense of taste, the inclination is not to eat at all or to just eat out of depression, she said.
The depression, she said, is crippling. "People don't understand how hard it is. You fight so hard every day mentally," she said.
She has to keep clipboards with notes so she remembers daily tasks, or to pick up her medicine, and so that she remembers conversations she has with clients at work.
"This is my new life," she said, tears in her voice.
Her wish, she said, is for doctors not to dismiss those who are experiencing this ordeal, and for the research to ensue so answers can be found, so we can learn "how we got so broken."
And, she said, due to the political climate with the country divided: "You live inside your own nightmare because you are too afraid to vocalize that you are hurting."
The stigma, she said, is so bad that some refuse to get tested; they don't want to be associated with the disease. If she had to do it again, she said she probably wouldn't take the test.
She's lost friends, she said, for saying she believes President Trump isn't handling his COVID diagnosis correctly. "This is a real disease," she said. But rather than dialogue, she's been accused of being a "cop hater" and told "COVID is not real'. Don't tell me it's not real."
She added: "I really wish they were right and I was wrong. I would do anything for this to be fake."