You’ve seen the joke many times, you may have even told it. Every day on social media for weeks now, there are multiple people posting something along the lines of, “I’ve been social distancing for years,” or “Self-quarantine is something I’m used to.” It’s good for a few likes between fellow extroverts in a pandemic, but in Cat Williams’ case, it’s no joke.
The Charlotte resident has suffered from cystic fibrosis her entire life, though she was only diagnosed in her 20s. The disorder is caused by a genetic mutation that clogs the lungs and digestive system with mucus, and patients have to take extreme precautions when interacting with others. The social distancing aspect was depicted in a 2019 film about two cystic fibrosis patients titled Five Feet Apart, a reality we can all relate to now.
“Before people came up with the COVID-19 distancing, people with cystic fibrosis were already having to practice that,” Williams says. “The cystic fibrosis community looks at people doing social distancing now and complaining about it. I mean, our whole lives have been dealing with that.”
Williams isn’t bitter, however, at least not with the people who are actually practicing social distancing. With COVID-19 arriving in the United States and Charlotte, she’s now more vulnerable than ever. She’s concerned about what will happen if the local population doesn’t adhere to the advice of experts and officials in an attempt to “flatten the curve,” meaning to lessen the amount of people who contract COVID-19 in a short time so as not to overwhelm the fixed capacity of the American health-care system.
Probably the first thing that our local, state and federal governments have all agreed upon, based on the advice of experts and scientists with the Centers for Disease Control and Prevention, is that the best way to flatten the curve is through social distancing practices, including quarantining at home with your immediate family or household members.
Williams has been alarmed to see videos of people ignoring those recommendations, behavior that could not only prolong the crisis we’re faced with but, worse, flood hospitals and lead to preventable deaths.
“I think people are really reluctant to give up their instant gratification,” she says. “It is hard to see the images of people just out at the beach in Florida when they have so many cases there and such a large elderly population. The fact that they would be willing to kill off so many people, I just … it’s hard to put into words at this point.”
Now, with President Trump and other Republican leaders teasing the potential to open the country back up for business as positive cases continue to rise, the plight of Williams and other vulnerable people may be just beginning.
I’m speaking with Williams over the phone following her noontime nebulizer treatment, one of nine that she takes throughout the day. All cystic fibrosis cases are different; doctors refer to it as a “boutique disease” because different medicines work for different people.
Overall, medical treatments have improved greatly since 25 years ago, which is around the time Williams was diagnosed. Since then, the average life expectancy of a cystic fibrosis patient has stayed nearly parallel with her age. Today, that life expectancy hovers around 50 years old. Williams is 49, and considers herself in the end stages of the disease.
She has a relatively severe case, with two rare genetic mutations that make the most recent innovations in treatment ineffective on her. She’s been on supplemental oxygen tanks for three years, needing them 24/7. She only takes the tubes off when she gets dressed, and even that leaves her out of breath.
Williams needs a double lung transplant, though she’s in a difficult situation, as she’s not quite sick enough to be placed high on the wait list, and certainly doesn’t want to get sicker just for better placement.
In the meantime, she attends pulmonary rehabilitation, which allows her to exercise in ways that would be impossible with the limited oxygen supply she has at home. Her fitness is the one aspect of the wait list conundrum that she can control, as physicians also take into account how likely she is to survive the surgery.
She’s become a strident advocate for more pulmonary rehab funding, as it’s often not covered by health insurance despite its proven benefits. Williams says the rehab is important not only because of how it’s helped her physically, but socially.
“It’s not only for the physical aspect and the safety of it, but also for the social interaction,” she says, adding that she’s lost most of her friends since transitioning to supplemental oxygen. “Most of the people in [pulmonary rehab] are people much older, but the social aspects of just being around people who understand how hard it is to live that life and to drag the tanks around just to try to do something simple like shopping for shoes that suddenly becomes this really difficult task.”
On March 16, her hospital shut the rehab center down until the end of the month, at least. Williams agrees that it was the right decision, though it will take away one of her last remaining lifelines to the world outside of her home. Her biggest concern since the arrival of COVID-19, however, is not with herself, but with what could happen more broadly if the local health care system is flooded with COVID-19 patients.
She’s spent years in and out of hospitals across the state, and she’s especially familiar with the respiratory units and intensive care units where COVID-19 patients are treated.
According to Williams, it was already difficult to get an empty bed on a respiratory floor during flu season before COVID-19 struck.
“Twenty years ago there were a lot of empty beds in hospitals, but now the economic model that they’re running on, they don’t have extra spots, they don’t have empty rooms. The hospitals stay full,” she says.
Williams says she’s also met many respiratory therapists who split their time between hospitals, working different shifts at different sites that are hours away from one another on the same day.
“So many new people are moving into our city every day … If you’re not just constantly building hospitals and bringing in more medical staff … as soon as they build a building the beds are full,” she says. “I’ve had to wait 23 days before, as sick as I am, in end-stage and on oxygen, but these places stay full, and that’s before COVID.”
Williams fears that some people won’t take the recent threat seriously because they’ve heard that only elderly people and other immunocompromised people like herself are at risk, or even if they’re infected, that they’ll be treated and let go. That’s not always the case, however. Stats released by the Mecklenburg County Health Department show that, of the first 142 positive cases here, more than half were between 20 and 39 years old, and more than 80% were in people younger than 60.
In Italy, where the death rate has surpassed China, hospitals have had to choose who deserves treatment due to limited beds. No stranger to wait lists, Williams wonders what that situation could mean for her here in Charlotte.
“If resources get stretched like Italy, the worst case scenario, I’m basically Old Yeller in the hallway while you get my ICU bed,” she says. “And people will just say, ‘She was gonna die anyway from cystic fibrosis.’”
It sounds pessimistic, but Williams has experienced the realities of how people view her. She’s gotten heckled by people assuming she’s a smoker because she’s wearing oxygen tubes, despite the fact that she’s never smoked. She’s been told she suffers from a child’s disease and, “at least you don’t have cancer.” She was even called old by someone with the Cystic Fibrosis Foundation, presumably meaning it as a compliment for surviving so long.
Now as COVID-19 sweeps across the country, she’s seen similarly off-putting remarks online about at-risk populations.
“They think that it won’t affect them, that it only affects those people, the others. They don’t think that everyone’s life has value,” she says.
And yet it’s not all doom and gloom for Williams. She’s been lifted up by other online interactions — members of her neighborhood’s NextDoor page, for example, who offer to run errands for the elderly and differently abled folks like herself.
“There’s a lot of good people out there,” she says. “Not everyone is being self-centered. There are a lot of people who are taking it seriously. It’s just, it will be sad that the rest of us are so affected by the people that don’t give a damn.”
This work by Queen City Nerve is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.
