While some parts of the country are seeing surges in COVID-19, cases in Massachusetts are down — but not gone. So, with the governor's reopening plan underway, early survivors of the virus are hoping their experience will convince others to be cautious.
In early March, Naomi London of Northampton, Massachusetts, started to get severe stomach issues and extreme fatigue.
“At the time, I thought I just had the flu, or I ate something bad,” she said.
When London was too weak to even feed her dog, she went to the hospital, but they sent her home with antibiotics. They didn’t have enough COVID-19 tests to give her one.
“I was told I didn't meet the criteria,” she said.
A few days later, feeling much worse and dehydrated, she went back to the ER at Cooley Dickinson Hospital, and this time she tested positive for the coronavirus.
At 71, London was a few years into retirement. She’d spent her career as a pediatrician, including several stints overseas doing humanitarian work.
“I went to Cambodia for seven months and I went to Zambia twice, and I worked during a dengue outbreak and a measles epidemic. And I never got sick,” London said. “And I had to come home to get COVID.”
She doesn’t know how she caught the virus. She’d been out on errands before social distancing was the norm. But the day she was admitted to the hospital, that question was not her top concern; her breathing was.
“The ICU doc showed me [a chest] X-ray. And I looked at it and said, ‘This is the worst X-ray I've ever seen in my life,’” she said. “And he said, ‘Yeah, it's yours. I think we need to intubate you.’”
London was on a ventilator for eight days. Afterwards, coming down from the sedation, she remembers a medley of songs looping over and over in her head, including "The City of New Orleans," "Rocky Mountain High" and the Jewish "Mourner’s Kaddish."
It took about three days to feel lucid again and to take full breaths on her own.
“From there on, I actually made really rapid progress every day,” she said.
'You’re gonna fight it. You’ll survive'
At about the same time, Dwayne Long, 49, a software analyst from Beckett, got a bad cough, chest discomfort and a terrible headache. His wife Paula drove him to Berkshire Medical Center for a COVID-19 test, which at the time had to be sent to California, and took more than a week to process.
While they waited at home for the results, he started having serious breathing problems. Paula remembers him sitting in his recliner all night. By morning, she said, “It was extremely scary. He was slightly blue-tinged and [he said], ‘We’ve got to do something. We’ve got to go in.’”
Dwayne went to the hospital by ambulance and didn’t see his wife for another five weeks. At first, doctors gave him high-flow oxygen through a face mask. He begged them not to put him on a ventilator.
“Dying from suffocation has always been my biggest fear,” he said. “The thought of them connecting me to a machine to [breathe] — that the power can be turned off — terrified me.”
But when he got sick enough, Paula gave permission, via FaceTime, to intubate him.
“And I just remember telling him, ‘You're gonna fight it. You'll survive. You're going to work through it,’” she said.
It was touch-and-go for 21 days, on and off the ventilator, including a bout of pneumonia.
Then he experienced what’s called an ICU delusion. As he was weaned off the sedatives, he didn’t know what was real and what wasn’t.
He occasionally saw the animated polar bears from Coca-Cola commercials dancing on his bed. At one point, he told his wife he was just back from a trip to North Carolina.
“The way they explained it was, your brain requires input. If it doesn't get input, it makes up its own,” Dwayne said. “And I was sitting in a dark room by myself with the door closed. So I created my own world, and unfortunately it wasn’t a happy place.”
When he was finally ready to leave the ICU, he vaguely remembers the nurses coming into his room, “like a flurry of storm troopers, unplugging me from the wall.”
They wheeled him down the hallway, lined with cheering hospital staff, as the hospital took a video of the occasion.
“They were actually more emotional than I was,” Dwayne said, “because, well, I was zoned. They had good meds!”
“It was one of our best days since [our teenage daughter] Bridget was born,” said Paula, who watched over FaceTime. “It felt so great.”
By that time, Paula and Bridget had also tested positive for the coronavirus — with only mild symptoms. Dwayne has diabetes and an auto-immune disease, which could explain why his version was so much worse.
But doctors aren’t always sure why the virus hits people differently.
'I’m in this by myself'
Renee Manley, 52, is a disabled vet who has been suffering from COVID-19 symptoms for more than three months. When she spoke on Zoom from her Springfield home, her face was in the dark, the curtains drawn.
“The light really bothers my eyes,” she said. “It's part of the virus.”
Unlike Dwayne Long and Naomi London, Manley’s symptoms developed slowly.
In March, she got a sore throat a couple weeks after volunteering with other veterans at the Soldiers' Home in Holyoke. She suspects that may be where she got infected.
Soon she lost her sense of taste, though it took her awhile to notice.
“I was throwing food out because I thought it was bad because I couldn't taste it, or it had a funny taste,” she said.
Gradually, she developed aches and pains, severe stomach problems, and body chills that she described as a “teeth-chattering type of chill, like you're literally freezing.”
But when she went to the emergency room, doctors told her she wasn’t sick enough for a COVID-19 test.
Over the next few weeks, as she got better and worse, she went back to the ER three times. One doctor told her, based on the symptoms, there was no doubt she had the coronavirus. But she still wasn’t tested nor admitted to the hospital.
“So I remember driving home and it hit me like a ton of bricks. I said, ‘I'm in this by myself — literally,’” she recalled.
Manley lives alone. And when breathing got difficult, she monitored her oxygen levels with an over-the-counter oximeter on her finger. She knew a healthy level was around 95%, but even when her levels dropped to the low 80s, she didn’t go to the hospital.
“I rode it out,” she said.
'OK, I'm not crazy'
Manley still gets headaches and fatigue. Her heart sometimes races up to 160 beats per minute. Her nights alternate between chills and sweats.
But without life-threatening symptoms, many doctors have been dismissive. While she says her primary care doctor has been helpful, she called another on-call doctor early one morning, “because I didn’t know what was happening to my body,” she said. “He’s like, ‘There's nothing wrong with you, and there's nothing I can do. So take a couple of Tylenol.’ And then he hung up.”
As she waits to feel normal again, she uses inhalers for her breathing and sees a therapist for the trauma of not knowing what comes next.
“I started sleeping with the light on,” she said. “I would sleep either fully dressed or with clothes ready to go in case I had to call 911.”
The place she’s found the most comfort has been social media. She joined a few Facebook and Reddit groups for what are called “long haul” COVID-19 survivors – people like her who report symptoms that won’t go away.
“I just felt like, OK, I’m not crazy,” she said. “So I log on every day and we compare notes.”
Manley is not counted among the official COVID-19 cases for Massachusetts. By the time she was tested, her results were negative; she thinks either the active virus had left her system or the test was wrong.
So she still keeps far away from others and hasn’t been with her adult son, who lives in Greenfield, since March.
She often looks out her window in Springfield’s Sixteen Acres neighborhood to see people having backyard parties with no masks.
“I'm really stunned and shocked that people are still not taking this seriously,” she said. “If they could see what I was going through, they would wear two masks!”
'So why am I still here?'
Just as the illness varies greatly case by case, so does recovery. When Dwayne Long returned from the hospital, he was so wiped out he needed a walker to get around the house.
“The bathroom is 20 feet away, and that was like running a marathon,” he said.
Six weeks later, he still coughs. But he could recently take a walking tour around the mansions of Newport, Rhode Island.
What’s most frustrating is what the virus has done to his memory and mental sharpness. He often can’t find words and has trouble planning ahead.
But he can still ask the big existential questions — and often does.
“Why am I here? If all those people that were as sick or less sick than I was — they didn't make it. So why am I still here?” he said. “Greater power questions.”
'If you’re going to mend fences, now’s the time to do it'
Naomi London — the retired pediatrician — considers herself lucky, too. It took her more than a month to rebuild muscle strength, but now she’s 95% back to normal, able to walk her dog, get groceries, and take up weaving again.
“I think the last thing to come back has been my concentration,” she said. “I'm just starting to read for more than like five minutes at a time.”
She’d like to know if she has immunity, but just in case, she never goes out without a mask. She donates her blood plasma as treatment for other COVID patients.
And she’s had some insights about life: “That it's unpredictable and fleeting and if you're going to mend fences with people, now's the time to do it.”
Twenty years ago, London had a falling out with a friend. After she recovered from COVID, she reached out, and now they’re back in touch.
This story first published on New England Public Radio.
This segment aired on July 9, 2020.