Global Courant 2023-04-15 17:00:39
On a Monday morning in Irvine, Courtney Garvin eats her breakfast in bed after her partner prepared it before he left for work.
She’s done and goes to the bathroom. She sits down to brush her teeth and wash her face.
From there she takes her longest walk of the day: 25 steps to her unused office, where she lays down in a bed and starts knitting and petting her cat.
At noon, she takes a stairlift—a motorized chair attached to the stairs—down to the kitchen to eat lunch prepared by her partner, Connor Mayer. She puts the food in the microwave and sits down again.
Courtney Garvin, who takes the stairlift from her upstairs room, gets help from partner Connor Mayer to perform basic tasks around the house. Mayer prepares her wheelchair to go outside for fresh air.
(Allen J. Schaben / Los Angeles Times)
Garvin, 37, contracted COVID-19 three years ago and now has COVID for a long time, as do about 15% of adults in California, according to data collected by the Center for Disease Control and Prevention. She and Mayer say their world has shrunk. She can no longer work.
“I didn’t expect to be in a situation like this for another 50 or 60 years where I lose so much functionality and need full-time care. Chronic illness takes away so many of life’s pleasures, both great and small,” Garvin said in an email. (Because of debilitating fatigue, some interviews with Garvin were done via email or Mayer spoke on her behalf.)
Mayer’s life has also completely changed.
Connor Mayer pushes his partner, Courtney Garvin, into a wheelchair as they go outside for fresh air.
(Allen J. Schaben / Los Angeles Times)
On mornings when he is at work, he wakes up, makes coffee and goes for a run. Then he makes oatmeal and tea for breakfast and leaves them in thermoses to keep them warm. He also makes her lunch and a smoothie. After making sure she has what she needs, he bikes to work. After 5:30 PM he does the dishes and cooks dinner.
She walks about 150 steps daily and takes a short walk in the neighborhood with Mayer pushing her into a wheelchair, she said.
Garvin and Mayer said they shared their story in hopes of helping other people understand the impact of this disease on their lives.
“I don’t think anyone expects something like this to happen to them, but here we are,” Mayer said in an email. “When we got COVID in March 2020, we had no idea of the long-term risks associated with it. That sudden loss of independence was hard on both of us.”
A review of the medications Courtney Garvin is on while battling COVID for a long time.
(Allen J. Schaben / Los Angeles Times)
Long COVID is the broad term used to describe multiple symptoms that can persist for weeks or longer after an initial infection with COVID-19. These include circulatory problems, shortness of breath, neurological problems, gastrointestinal problems, and fatigue, among others. The severity of the symptoms and their impact on people’s daily lives can vary greatly.
Some people see symptoms improve over time, while others get better and then have some symptoms return.
The CDC has allocated $25 million to continue studying long COVID, and groups like the Patient-driven research collaboration working on research into the long-term effects of COVID-19.
While much of the public is moving on from the pandemic, people like Garvin must deal with the complex medical system and a condition for which there are no known treatments. Navigating the medical, financial, mental and physical challenges of this disease is a challenge.
Before falling ill in March 2020, Garvin worked as a storyboard artist and as a touring musician as a member of the Courtneys, and Mayer was in graduate school. Mayer is now one assistant professor in the Department of Linguistics at UC Irvine. When not working, he is a full-time caretaker for Garvin, limiting his social interactions to avoid reinfecting her.
Courtney Garvin used to play in a few bands, but that’s on hold until she recovers from a long COVID.
(Allen J. Schaben / Los Angeles Times)
Garvin retired from work in the fall of 2020 when her fatigue, migraines and shortness of breath made it difficult for her to walk more than a few steps and speak more than a few words.
She became disabled and went to doctors, many of whom dismissed the symptoms as her health deteriorated. She moved to Irvine in the summer of 2021 where she was diagnosed with lung COVID.
“The consistency of the experience of going to doctor after doctor, seeking help and being disbelieved and condescended to is really surprising to me,” Garvin said. “It points to the underlying systemic problem in our culture where we view chronic illness as a moral failing.”
In addition to the mental and physical challenges, Garvin noted that infrastructure issues such as the lack of wheelchair-accessible counters and a shortage of automatic doors at doctors’ offices and the Department of Motor Vehicles made her feel invisible.
Courtney Garvin first fell ill with COVID in March 2020.
(Allen J. Schaben / Los Angeles Times)
The couple live in a UC Irvine townhome that is considered compliant under the Americans with Disabilities Act, but the unit’s stairs are a problem for Garvin. After several calls to the housing association, letters from doctors and insurance companies, the couple installed a stairlift, but paid for it out of pocket.
Garvin and Mayer spent about $62,000 on medical expenses, including compression garments ($450), the stairlift ($2,750), support groups ($860), and copays ($3,300). They’ve also spent countless hours in waiting rooms, on hold with doctors, and dealing with insurance and disability paperwork.
Post-viral diseases like long COVID are not newbut some doctors across California consider long COVID to be a new phenomenon.
“It’s grim to think how many people’s lives could be changed because we didn’t understand the long-term effects well enough to include them in considerations of preventive safety measures,” Mayer said.
Courtney Garvin takes a break from descending the stairlift from her upstairs room as her Connor Mayer prepares to help her with basic tasks at home.
(Allen J. Schaben / Los Angeles Times)
Dr. William W. Stringer, a pulmonologist and critical care physician who started the post-COVID program at Harbor-UCLA Medical Center, is trying to better understand those long-term effects.
“I think there are a lot of people who are not recognized by specialists and doctors,” says Stringer, who has treated patients with some of the worst long-term COVID symptoms. “It’s also a huge financial problem, between the lack of social work and help for food and trips to the doctor.”
Mayer said it’s frustrating for him to see a serious health problem have little public awareness and sympathy. Towards the end of the interview, Garvin said she was exhausted and let Mayer speak for her.
“Strength is something I’m pretty lacking at the moment,” she said. “I’m completely worn out.”
Have you had COVID in California for a long time?
The Los Angeles Times is working on a series of stories to understand the experiences of long-term COVID-19 patients and their caregivers. You can contact The Times here.
