Long COVID survivor 'stuck on a hamster wheel just going around and around'
Pastor Ben Thomas sat in his living room chair catching his breath after walking up the stairs, an oxygen tube connected to his nose. The East Meadow man contracted COVID-19 two years ago this month, but the disease still affects every minute of his life.
"Climbing down is fine, but climbing up is hell," Thomas said. "I used to run this. No more. But one day I will."
Thomas is one of millions of Americans with lingering long-term effects of COVID-19 months after their initial infection. Two years after the first COVID-19 cases on Long Island, many still struggle with a condition that doctors can’t fully explain, with uncertainty about whether the symptoms will ever go away.
In some people, "long COVID" causes debilitating symptoms that drastically constrain everyday activities. Others have improved significantly, but still are not back to normal. There is no known treatment.
What to know
Millions of Americans have a condition called “long COVID,” in which symptoms linger for months after initial infection.
Some who were among the first Long Islanders to contract COVID-19, in March 2020, still are enduring long COVID symptoms.
For some, long COVID is debilitating and drastically constrains everyday activities. For others, there has been great improvement, but doctors say few patients with long COVID have returned to their pre-COVID normal.
As the number of new COVID-19 cases continues to fall and public officials talk about COVID-19 fading more into the background of American life, some with long COVID feel left behind.
Elizabeth Medina, 39, of Levittown, who has had an array of problems since contracting the virus in March 2020, including fatigue, hair loss and lack of taste and smell, said she feels "like I’m a non-factor in this world."
"It’s like, ‘Everybody’s fine, let’s move on,’ " she said. "But I’m like, ‘Wait, wait, there are still people here unresolved.’ I feel like I’m stuck on a hamster wheel just going around and around and everyone else is moving."
14 million to 42 million have symptoms
About 10% to 30% of people infected with the coronavirus experience long COVID, according to a preliminary estimate from RECOVER, a long COVID research initiative from the National Institutes of Health. The Centers for Disease Control and Prevention estimates that about 140 million Americans have contracted COVID-19, which would mean 14 million to 42 million have long COVID symptoms. Some studies found even higher prevalence.
The CDC defines long COVID as ongoing health problems four or more weeks after initial infection. Even many people with mild initial symptoms have lingering problems.
The most common symptom — in 58% of those with long COVID — is fatigue, according to an analysis of 15 long COVID studies published in August in Scientific Reports. Headaches, attention disorder, hair loss, difficulty breathing and loss of taste and smell were among other common symptoms.
Carl Shaughnessy, 59, has been so sick for the past two years that he and his wife, Susan, 63, reluctantly moved from Shirley to Florida in September because the cold air of Long Island winters exacerbated his breathing problems and caused chest pains.
Shaughnessy was forced to leave his job as a project manager for a real estate company because of severe fatigue, "brain fog" that makes it difficult to concentrate and remember things, and chronic pain.
"We didn’t plan on leaving Long Island, nor did I want to retire," Shaughnessy said. "I had no choice."
Shaughnessy said he’s constantly tired and gets winded very easily. He uses a cane while walking to balance himself. He’s fallen down in the past. The severe pain he frequently feels starts at the base of the spine, travels to the rib cage and causes pounding headaches.
"There’s no test that can currently identify what part of the body has been adversely affected to cause the chronic pain, to cause the 'brain fog,' to cause the tiredness," said Susan Shaughnessy, who is a registered nurse.
That echoes what other medical professionals and scientists have found: Tests often cannot pinpoint the cause of long COVID symptoms.
Carl Shaughnessy meets with his doctor, Dr. Sritha Rajupet, at Stony Brook Medicine on Dec. 2, 2020. Credit: Kali Chan/Stony Brook Medicine
Carl Shaughnessy spent 47 days in the hospital, and physical and occupational therapy allowed him to walk again and perform other tasks. But there’s been no change over the last year, he said.
"From being strong and being able to work and do whatever I had to do without getting tired, being able to think clearly — all of that stuff is gone now," Shaughnessy said. "I fight with depression. I just try to make the best of every day because this is my new norm."
The couple couldn’t find a long COVID program near their home, so they’re returning to Long Island in April to see doctors at Stony Brook Medicine’s Post-COVID Clinic in Commack.
The clinic has seen about 830 patients since it opened in November 2020, said Dr. Sritha Rajupet, primary care lead at the clinic.
Few people have returned to their pre-COVID normal, but almost all have shown some improvement, she said. Some "have defined a new normal that they’re comfortable with," by, for example, resting more and reducing the number of activities they’ll do on a given day, Rajupet said.
Although there is no known treatment for long COVID, some existing medications and therapies can help with individual symptoms, such as steroid inhalers for people with shortness of breath, she said.
Dr. Sarun Thomas, of NYU Langone Hospital-Long Island in Mineola. Credit: Debbie Egan-Chin
Dr. Sarun Thomas, director of the medical intensive care unit at NYU Langone Hospital – Long Island in Mineola and Pastor Ben Thomas' pulmonologist, said all of his long COVID patients continue to improve, although sometimes slowly. (Dr. Thomas and Pastor Thomas are not related.)
Some patients are so exhausted after a day of work that they may need naps, but the naps gradually get shorter, Dr. Thomas said. One previously healthy man in his 30s is back to playing soccer, although he can’t run down the field as fast as he could.
A recent study showed a correlation between long COVID and several factors, including type 2 diabetes. But the cause is still unknown.
Medina was never hospitalized with COVID-19, but she said she’s seen little improvement over the past two years, and new problems sometimes appear.
She still can’t taste and smell food, and previous favorite foods have a disgusting texture, like pizza that "feels like cardboard and rubber."
Medina has food allergies, but she now can't tell if she's inadvertently eating something harmful until it’s too late, so she always carries an EpiPen in case of a severe allergic reaction.
Medina also endures frequent pain and numbness from writing and typing in her job as a school guidance counselor in Manhattan, and exhaustion from working all day and her nearly five-hour round-trip commute. Walking a block, she said, feels "like I ran a mile."
"When you have this fatigue, you’re just tired and groggy," she said. "You can’t think clearly. I’m in a state of confusion all the time."
Scientists still don’t know how long symptoms of long COVID will last or whether others will emerge. That worries Medina.
"I think about the long-term damage I can have that they’re not even aware of," Medina said.
'Not where I think I could be'
Michael Sasuk, 57, of Babylon, has improved markedly after 38 days in the hospital beginning in March 2020.
Michael Sasuk, of Babylon, has made a lot of progress since he got out of the hospital in April 2020, but still has joint pain, endurance issues, less strength than pre-COVID, problems gripping, and other issues. Credit: Newsday/Steve Pfost
"I gained some of my strength back, but I’m still not where I think I could be," he said.
Sasuk, a retired NYPD detective and an emergency medical technician and EMT instructor, finds it harder to move patients or pick up heavy objects, has trouble gripping and gets winded when he exerts himself too much. He can’t walk as fast or as long.
He expected he’d have physical problems after leaving the hospital, but not for two years.
"I don’t know if this is a long-term thing, something I’m going to have to accept at this point, or if I’m going to get better," he said.
Ben Thomas spent 106 days in two hospitals with COVID-19. He’s improved slowly — a recent CT scan found improvements in his lung function — but he still needs an oxygen concentrator wherever he goes. He uses a wheelchair for longer distances.
When he’s at the grocery store, he asks for help getting products from lower shelves.
"I cannot even pick up a gallon of milk," he said.
Thomas returned to his duties as lead pastor of Queens Church of God in Queens Village, preaching in English and Malayalam, usually three to four times a week, although sometimes he asks for help carrying the Bible to the pulpit.
Thomas is hopeful he will one day no longer need the oxygen concentrator, but he is content that he can still preach and counsel and help others. That’s why, he said, God put him on Earth.
COVID-19 may have debilitated him, but, Thomas said, "It doesn’t stop me with my purpose in life."
David Olson covers health care. He has worked at Newsday since 2015 and previously covered immigration, multicultural issues and religion at The Press-Enterprise in Southern California.
