‘I want my life back.’ State College man shares experience as COVID-19 ‘long hauler’
Chris Fowler can ride a bike, but he can’t walk four blocks without getting sick. He can climb, but he can’t run. He goes to bed early, but he can’t work a full day without paying for it.
He doesn’t know why.
Two weeks ago, the 45-year-old State College resident lost all feeling in his face and throat — leading to four sleepless nights and doctors advising him to double his medicine.
On Feb. 26, Chris became sick while abroad with a fever, cough and fatigue. He and his doctors believe his lingering, serious symptoms are the result of long-haul COVID-19.
“I want my life back, and I can’t have it,” he said. “No one knows what the path is.”
Almost a year into the pandemic, few formal studies on long-haulers have been conducted, but preliminary reports describe the severe, lingering damage the coronavirus can have on the body. An Italian study reported that 87% of patients still had symptoms after two months; a British study found similar trends.
In a survey conducted by the Centers for Disease Control and Prevention, a third of 270 non-hospitalized coronavirus patients said they hadn’t returned to their usual state of health after two weeks. For comparison, roughly 90% of people who get the flu recover within that period.
The CDC published a list of persistent symptoms long-haul patients are experiencing, which include chest pain, brain fog, fatigue and hair loss, but because symptoms vary by patient, there is no set treatment plan.
With a team of doctors — a neurologist and neuropsychologist in Hershey and a pulmonologist at Johns Hopkins — and support from his family, Chris is trying to navigate his way to what he hopes is recovery.
The beginning of the COVID-19 pandemic
Chris and Lara Fowler, along with their two children, were living in Sweden as visiting scholars from Penn State when the COVID-19 pandemic began.
In early February, stories about the coronavirus were circulating around Europe, but the virus “felt very far away,” Lara said.
On Feb. 24, they flew to Geneva, took a shuttle to ski in the Alps and returned March 2.
By early March, the coronavirus went from an “abstraction to a reality,” Lara described in a blog post documenting their experience. And as they prepared to travel from France to Sweden, signs of the pandemic — signage, masks and enhanced cleaning — became visible, except on a flight from Paris to Stockholm where protocols were less apparent.
Chris, who felt like he had a “heavy weight on his chest,” called Sweden’s medical care helpline on March 3, was put on hold and opted for the callback option.
“No call back ever came,” Lara recounted.
After five days of trying, Chris got through the helpline and was “reluctantly” directed to a clinic three days later. On March 10, a doctor diagnosed him with bronchitis.
Because he traveled to France — not China or Italy — he was never tested for the coronavirus.
Navigating a global health crisis in a foreign country
Chris turned 45 on March 13, two days after Sweden reported its first COVID-related death.
“We figured we’d walk to a bakery and get his cake, and we weren’t a block away from the house,” Lara said. “He said, ‘I can’t walk. I can’t do this. I have to turn around.’”
Less than a week later, Sweden closed its borders. Fulbright participants — like Lara — were urged to return to the United States as soon as possible.
“We were having to make this decision. His health is poor. He likely has COVID; I may have COVID,” Lara said. “Either way, we’re both vulnerable and to pack up and to leave in the middle of this, when everyone was rushing home, seemed like it would expose us. We would either expose other people, or they would expose us.”
April came and Chris started to feel better. He went for a few runs. Then, his health became worse.
At 3 a.m. on April 26, Lara woke to a thud.
Chris — thinking he had a stroke and with a numb arm — had fallen to the ground.
“It takes hitting the ground and lying in a pool of blood to get an ambulance,” Lara recounted in her blog. “But, we finally did.”
As Stephen, their 13-year-old, waited outside for the ambulance and with Elizabeth, their 10-year-old, next to Chris to keep him warm, Lara scrambled to pack a bag for the hospital. When the emergency technicians arrived, Lara said they spent an “eternity” putting on personal protective equipment, put Chris on a stretcher and took him away — alone.
Chris spent the night on a metal gurney with his cellphone and charger serving as a lifeline to his family.
“There wasn’t a thing I could do for him,” Lara said. “Nothing.”
During a more than a 40-hour stay, Chris received his first COVID-19 test since the pandemic began, a requirement to get an MRI.
The test came back negative.
Days after his release, he had a telehealth visit with a doctor in State College, who said it sounded like bronchitis.
“We feel like we’re going back in time to a health care system in central Pennsylvania that has not seen the impact of this virus, yet,” Lara wrote of the diagnosis.
On May 9, the family “quietly” let themselves out of Sweden, Lara wrote — hoping to return “under better circumstances.”
Returning to the United States
The Fowlers returned to Centre County when positive case numbers were “trivial” compared to what they experienced abroad.
The state Department of Health reported 119 total cases in Centre County on May 10.
“We felt, in April, like we were living in Centre County now,” Chris said. “Centre County isn’t actually bad, but you don’t have to get outside the State College bubble too far to have people behaving as if this thing doesn’t exist and isn’t happening to anyone. That’s how Stockholm was.”
Chris doesn’t venture out much, partly because some still refuse to wear masks, an act that shouldn’t hold political meaning, Lara said.
“I thought about making a T-shirt that says, ‘My husband is dealing with the after-effects of COVID. Talk to me about it,’” she said. “A mask is a small and simple mechanism that could save an extraordinary number of lives and allow us to keep our businesses open.”
Their kids have been “rockstars” about mitigation efforts, Chris said — adding that their family has a personal relationship with the coronavirus.
“They have a lot of respect for what getting COVID means, so they don’t take it lightly at all,” Chris said. “Children are more malleable than adults. They say, ‘Oh, mask on. Remember your masks.’ Kids, they forget their gloves all the time or lose their hats — things like that. But, they keep track of their masks.”
Since February, Chris has felt a variety of symptoms — burning sensations in the lungs, aches, loss of appetite, exhaustion — and some have left him feeling as if he got hit by a truck. After his fall, he lost a significant amount of cognitive ability, describing himself as “pretty slow” over the summer and still dealing with long-term symptoms.
“I don’t know 100% that I had it. I just know that I went to what two weeks later was identified as a hotspot for COVID, and a chest infection, fevers, achy bones and fatigue followed,” Chris said. “It left me with damaged lungs for several months, likely a stroke — now, a nervous system thing. At some point, given all of those things, it adds up.”
Finding support among each other
Chris and Lara are thankful to have insurance, jobs and a team of doctors. They’re grateful to not have to worry about losing their home during the pandemic, but they’re still frustrated.
They don’t use the past tense to describe the experience because they’re still living through it.
“My current prognosis is to take this medicine and wait six months to see if I can walk three blocks instead of two blocks,” Chris said. “That’s a profoundly unsatisfying diagnosis.”
Without answers from doctors, long-haulers have found support among each other.
Body Politic, a wellness organization, created a small Instagram group chat in March, so long-haulers could share their experiences. Since June, more than 18,000 people have requested to join. Doubling in size, the organization now operates a series of Slack channels with thousands of active participants.
Lara is a member, but Chris finds it overwhelming.
There are groups for people who tested positive, are experiencing symptoms and are recovering. There are channels for symptomatic cases that last longer than 30 days and ones for caretakers. Participants use the forum to talk about recovery after being on a ventilator. Other channels focus on lesser known symptom groups, like respiratory and neurological effects, and are geared toward mental health, financial concerns and advocacy.
“I almost can’t take it because it’s so raw,” Lara said. “There are so many people experiencing such weird things. We didn’t plan to be part of this experiment but nor did anybody.”
