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2021-01-05 13:36:22

Lin Qing has the same dream almost every night: Her husband is trying to disconnect his feeding tube again, and she’s struggling to stop him.

Each time, the 65-year-old will wake up, her back drenched in sweat. Then, she’ll look over at her partner lying in his hospital bed, to make sure her feverish visions weren’t in fact real.

As 2021 begins, many in China are moving on from the pandemic. Despite sporadic localized outbreaks, lockdowns are now a distant memory for most of the country, and the government has already begun drawing a line under the crisis — honoring its coronavirus “martyrs” and setting up special exhibitions to memorialize its response.

Yet for Lin and others in Wuhan, the city where the epidemic began, the COVID-19 nightmare is far from over.

Both my heart and body feel exhausted.

Nearly 12 months after they were first infected, Lin and her husband remain stuck in a hospital ward. Though she only had mild symptoms, he is still struggling to recover from the severe brain damage he suffered during the disease’s acute phase.

Even now, the 70-year-old requires intensive treatment and round-the-clock care. The stress has pushed his wife to the brink of despair.

“Both my heart and body feel exhausted,” says Lin, whose name has been changed to protect her privacy. “Sometimes I’ve even thought, if the window in this room opened a little bit wider, I’d jump from it.”

Lin’s husband is part of an overlooked group in China — COVID-19 “long-haulers” whose suffering has continued long after they’ve been declared virus-free.

Long-haulers are struggling to gain recognition in countries around the world, but in China — where the pandemic was suppressed early and media have emphasized stories celebrating the country’s success — they’re increasingly fading from the public consciousness.

Shortly after emerging from its 76-day lockdown in April, Wuhan closed its emergency hospitals and declared it had zero remaining COVID-19 patients. In the months since, official data on the number of people still suffering from health problems caused by the coronavirus in China hasn’t been released.

When asked how many long-haulers remain in Wuhan, the city’s health commission declined to comment. Wuhan No. 1 Hospital, which operates a special outpatient department for recovered COVID-19 patients, didn’t respond to Sixth Tone’s interview request by time of publication.

The lack of official recognition has left families like Lin’s feeling isolated and afraid for the future. Many are worried they’ll be financially crippled by their mounting medical bills, as it’s still unclear to what extent government promises to cover COVID-19 patients’ treatment will apply to long-haulers.

Medical staff transfer a patient to an ICU at a hospital in Wuhan, Hubei province, April 2020. Pan Songgang/People Visual

Medical staff transfer a patient to an ICU at a hospital in Wuhan, Hubei province, April 2020. Pan Songgang/People Visual

Lin never imagined it would come to this. This time last year, she and her husband were enjoying the quiet life of a retired couple in Wuhan, tending to their garden, caring for their dog, and helping their granddaughter with her homework. In the evenings, Lin would cook dinner, while her husband played the piano.

But then, on Jan. 25, 2020, Lin’s husband suddenly passed out in the kitchen.

“I was on the living room sofa reading messages about the outbreak of the ‘new pneumonia’ when suddenly I heard him saying ‘oh, no!’” Lin told Sixth Tone in a previous interview in March.

From that moment, the couple entered a surreal new world, as it became clear that both of them had contracted the mysterious new virus sweeping through the central Chinese city.

With China scrambling to contain the growing epidemic, the couple was separated and sent to different hospitals for treatment. They wouldn’t see each other again for four months, with Lin’s husband transferred between several intensive care units as his condition worsened.

For weeks, Lin’s only connection with her husband was the 4 p.m. phone call she received from the hospital each day, updating her on his situation. If the staff called late, every minute spent waiting was torture.

In desperation, Lin’s family took to standing outside the hospital and staring up at the buildings, trying to guess which one her husband was inside. Sometimes, they even flew a drone around the complex, hoping it might capture a photo of him. 

By the time Lin’s husband was finally discharged from the ICU in June, China had successfully contained the outbreak within its borders — after nearly 4,700 deaths, according to official figures. Life in most cities was already returning to something resembling normality.

A man looks at a hospital bed being disinfected at Hankou Hospital in Wuhan, Hubei province, Feb. 27, 2020. The man’s father had previously stayed on the bed. Zhang Ziwang/Southern Visual/People Visual

A man looks at a hospital bed being disinfected at Hankou Hospital in Wuhan, Hubei province, Feb. 27, 2020. The man’s father had previously stayed on the bed. Zhang Ziwang/Southern Visual/People Visual

When the couple was reunited, however, it was clear their lives would never be the same. The disease had taken a terrible toll on Lin’s husband. Brain damage had left him unable to move or speak, and he relied on an oxygen supply and feeding tube to survive. 

The ordeal, meanwhile, appeared to have worn down his will to carry on. Though initially overjoyed to see Lin, he quickly became listless and resistant to further treatment.

“At first, he was so excited and happy to see me and our daughter, but those positive emotions didn’t last long,” says Lin. “Though he couldn’t say a word, we guessed he had suffered too much. He had struggled to survive to meet us, he’d fulfilled his last wish, and he was tired of living.”

But Lin refuses to give up. For the past six months, she has been taking care of her husband in the recovery unit where he was moved after leaving the ICU. 

For the retiree, coping with the physical demands of being a carer has been tough, especially as she only recently recovered from COVID-19 herself. But she has diligently learned how to turn her husband over, clean his waste, and remove the phlegm that occasionally emits from the tube inserted through an incision in his neck.

“At least I can see him every day,” Lin says.

A view of Wuhan Central Hospital in Hubei province, July 30, 2020. Zhang Yi/People Visual

A view of Wuhan Central Hospital in Hubei province, July 30, 2020. Zhang Yi/People Visual

Though the nurses have advised Lin to restrain her husband’s left hand — the only part of his body he’s now able to move — in case he hurts himself, she says she can’t bear to do it. Instead, she watches him closely all day and encourages him to be more patient and positive.

“I still need to get some rest at night, but I’ll immediately wake up if I hear anything strange,” Lin says. “Each time, I’ll always find that he’s removed the quilt and that his left hand is on one of the tubes.”

It’s still unclear to what extent Lin’s husband can recover. He has received physical therapy to help him regain his power of speech and limb usage. Though these courses can be agonizing, Lin says she’s doing her best to stay positive.

“When his condition gets better, I feel relieved,” she says. “But when it gets worse, I get sad.”

There are some signs of progress. Lin’s husband can now sit for several hours with his blood oxygen level remaining normal. When he was finally able to sit in a wheelchair, Lin ordered him a new T-shirt and pants, and adjusted them using a needle and thread to make them easier to wear.

“He has his pride. I can’t let him go around naked,” Lin says. 

These gains, however, have come at a crippling financial cost. Lin’s family already has a hospital bill of 300,000 yuan ($46,500), and that figure doesn’t include the many extra expenses associated with her husband’s treatment.

A COVID-19 patient receives medical treatment at Leishenshan Hospital, an emergency pop-up facility in Wuhan, Hubei province, March 2020. People Visual

A COVID-19 patient receives medical treatment at Leishenshan Hospital, an emergency pop-up facility in Wuhan, Hubei province, March 2020. People Visual

After exhausting herself trying to provide full-time care for 20 days, Lin was eventually forced to hire a nursing assistant, who charges over 200 yuan per day. She also has to buy her husband protein powder and other dietary supplements to aid his recovery.

Several months ago, Lin sold the house where her husband grew up to help pay for his treatment.

Other relatives of long-haulers in Wuhan are facing similar difficulties. Wang Yingying, 36, says her father is still hospitalized months after being reclassified as a “recovered” COVID-19 patient, as he’s still suffering from a pulmonary infection.

For most families, the pandemic ended when the lockdown was lifted. But for my family, it’s still ongoing.

“For most families, the pandemic ended when the lockdown was lifted,” says Wang, whose name has also been changed for privacy reasons. “But for my family, it’s still ongoing.”

Wang says she has no idea how she’ll pay for her father’s hospital fees. She settled an initial 40,000 yuan bill in April, but five months later the hospital began pushing her to pay off the much larger costs of her father’s recovery treatment, as the 63-year-old’s roughly 500,000 yuan annual medical insurance quota had already maxed out.

Doctors have told Wang to check the exact amount she owes on the hospital’s self-service machines, but she can’t bring herself to do it. She knows it will likely be at least 200,000 yuan — more money than her family earns in a year.

“Even now, I still don’t dare check the number,” says Wang. “The government expended so much effort to bring my father back from hell. But now, it (the recovery fee) has become so huge, I will never be able to pay it.”

It’s still unclear whether the government will provide aid to long-haul COVID-19 patients like Wang’s father. 

During the height of the epidemic, China covered the treatment costs of all confirmed coronavirus patients, spending over 1.4 billion yuan by April. The medical insurance system provided two-thirds of that amount.

Then, in June, Tong Zhaohui, a senior disease control expert, said in an interview with state broadcaster China Central Television that patients wouldn’t need to pay for their recovery treatment, remarks that quickly went viral. 

Yet patients are still waiting for details on how the government will handle recovery treatment payments. Early signs indicate that long-haulers waiting for large reimbursements will be disappointed.

A man rides a ferry on the first day after Wuhan lifted its 76-day lockdown, Wuhan, Hubei province, April 8, 2020. People Visual

A man rides a ferry on the first day after Wuhan lifted its 76-day lockdown, Wuhan, Hubei province, April 8, 2020. People Visual

An official at a local health care security administration in Wuhan tells Sixth Tone that once patients test negative for COVID-19, the government’s coverage of treatment costs comes to an end. As there is no set definition of the sequelae — or health conditions caused by — COVID-19, patients’ medical costs are dealt with according to the regular rules defined by national and local medical insurance systems.

“There still isn’t a clear standard for the sequelae of COVID-19,” says the official. “Such a specific standard requires a long-term tracking process.”

For Wang, this uncertainty only adds to her stress. She tells Sixth Tone she has often felt so overwhelmed, she can’t even bear to read her father’s text messages.

“Despite the pulmonary infection, he can communicate with me, and he has a strong will to survive,” she says. “I’m under such huge psychological pressure.”

The hospital bill has become so huge, I will never be able to pay it.

In other cases, medical staff are helping to pay for their own patients’ treatment, as their families are unable to keep up with hospital payments.

Lin says another COVID-19 patient moved into her ward during the summer. Despite the fact the woman’s husband had already died from the virus, her daughter rarely visited her in the hospital. She had taken on extra work in an attempt to pay off the treatment and nursing bills.

“Fortunately, the hospital didn’t stop treating her, even though she hadn’t paid the fees,” Lin recalls. In the end, the doctors and nurses donated money to buy the woman protein powder and other daily supplies, she adds. 

In November, the ward also gathered to celebrate the 70th birthday of Lin’s husband. The moment she woke up that morning, Lin recalls going over to his bed and whispering in his ear: “Today is your birthday, and I wish you won’t be tortured by this illness anymore.”

Her husband blinked his eyes in response, and the couple cried together in silence.

Additional reporting: Tang Xiaolan; editor: Dominic Morgan.

(Header image: People cross the Yangtze River by ferry in Wuhan, Hubei province, Nov. 24, 2020. Hector Retamal/AFP via People Visual)