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Loken Lee, wearing a black mask

Loken Lee, a designer and undergraduate student at the Art Institute of Chicago, poses for a portrait near her home in Printer Row on March 8, 2021. She was recently diagnosed with Multiple Sclerosis, putting her on the list eligible for vaccinations.

Manuel Martinez

Even After The COVID-19 Vaccine, Some With Life-Threatening Conditions Remain Wary

Mike Altergott could have died last February, and it wasn’t the first time.

He was feeling exhausted during a show with his band Space Gators. Four hours after the gig, he was in the ER. Doctors said his intestines were close to rupture, which can cause sepsis.

Altergott has Crohn’s Disease, a condition where an overzealous immune system attacks the gut, causing scar tissue and blockage. Altergott needed surgery in November, and has taken an immune-suppressing drug since 2014. That makes him susceptible to infections, a big problem during a global pandemic.

People with serious underlying health conditions like Altergott’s have been eligible to sign up for the COVID-19 vaccine in most of Illinois since late February. Still, many of those with immunocompromised bodies say that even with a vaccine, their lives won’t change the way others’ might.

Altergott got the vaccine on Monday and cried from relief in the parking lot. Still, he’s strict about quarantine, and says he has to be careful about when and who he interacts with -- and will be doing that for quite some time.

“With the vaccine, at least I can do things now that I need to do for my life and I don’t have to fear dying, but I have to still maintain that respect for others,” Altergott said. “We don’t know everyone’s backstory and I think we should all assume at a minimum that they’re going to be interacting with someone who is vulnerable that they love.”

Remaining careful

For most people, the COVID-19 vaccine is more than a drug -- it’s hope life can feel like life again and that the end of lockdown is approaching.

The Centers for Disease Control and Prevention announced Monday that fully vaccinated people can gather unmasked and indoors with other people who are also fully vaccinated, but should continue wearing masks in public.

But immunocompromised people say they have to remain more careful. For them, the vaccine is an extra cushion of safety, not a free pass.

Altergott worries he could still be vulnerable, and will be masking until there’s no community spread. Even if he feels confident that he won’t get seriously ill, he doesn’t want to be reckless while the virus is still out there, something he’s seen others do.

“That is deeply distressing to witness,” he said. “We must continue that mindset of protecting the vulnerable and protecting others. I would challenge those people who challenge the benefits of wearing masks and distancing — have they experienced loss in their life? Do they want to be responsible for that kind of loss in someone else’s life due to their negligence?”

At the start of the pandemic, Loken Lee thought she was healthy. Then she was hospitalized after five days of head-spinning in August.

She was laying on her bed when a student doctor burst into the room with a smile.

“He looked over the radiologist’s shoulder and he saw the lesions in my brain and said, ‘This is great news, you have [multiple sclerosis] just like your mom,’” she recalled. “I just looked at him with the most evil glare. Are you serious, this is how you’re breaking this life-changing news to me right now?”

Multiple sclerosis, or MS, is a disease where the immune system attacks the protective coating around nerves in the brain, tissue called myelin, causing communication breakdown between them and the rest of the body. It’s like a rat chewing on wires.

People with MS can wake up some days unable to walk. Loken said months later she’s still wobbly and that people may think she’s just clumsy. To treat MS, Loken gets a biannual infusion that completely wipes out her b-cells, leaving her vulnerable.

She’s a fashion design student at the School of the Art Institute of Chicago and took one in-person class this semester. She kind of regrets the decision, but is jealous of peers who can push the limits of their safety.

Living with the disease is still so new that Loken has to remind herself a bus ride could be gravely risky.

“There will be days I go without thinking about it,” she said. “I kind of forget about it and then I remember and it’s like f*** this sucks. I still have this thing looming over my shoulder, in my brain, in my head, literally.”

Normal life is still far away for Loken. Friend hang outs are out for now. She passes the time by watching true crime shows with her roommate. The monotony is lonely.

She misses her family in Seattle and hopes to visit once she’s vaccinated, despite the risk. Now that the CDC says that unmasked gathering between vaccinated people is safe, Loken sees herself eventually introducing one or two close friends back into her social circle, as long as they’re still taking precautions.

Picking and choosing acceptable risks

The immunocompromised people who spoke to WBEZ said that at some point, they have to pick and choose between acceptable risks. Staying inside has its own consequences to mental health.

Others don’t have time to wait.

Patricia Lee has stage 4 breast cancer. When she gets the vaccine, she’ll visit her son in Los Angeles. Her first grandchild is due in April.

“After the vaccine hopefully, if I do get the virus, I wouldn’t die from it,” she said. “I would maybe get sick. With my condition, I don’t know how long I could live. Stage 4 cancer is not very hopeful. They don’t have a cure for cancer, yet.”

She used to be an usher at church, a caretaker for her daughter in a wheelchair. For now, she’s quarantined with her boyfriend.

She misses all of it. But, she says, she just can’t risk any of it right now.

Vivian McCall is a freelancer. Follow her @vivmccall.

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