Five years after the start of the COVID-19 pandemic some people have not left it. Most people have moved beyond. Those with Long COVID still contend with what the virus wrought. They are diminished and sequestered by what has happened to their bodies. They say it can be difficult to watch everyone else go ahead with life while they cannot. Yet, there is still room for hope and joy.
Kelly Lay of LeRoy is an unusual case. She is one of the rare few who is almost certainly allergic to the COVID spike protein, a one in 8 million shot.
“I won the wrong lottery," Lay said with a laugh.
Lay’s symptoms started after she got the vaccine and went into anaphylactic shock.
“I kept having issues with fatigue. I had an eye disorder develop that caused retina damage in one of my eyes and is slowly damaging both eyes. I had ADHD symptoms," she said. "It became much harder to remember things. I forget words easily."
She has contracted the novel coronavirus twice since then. Once she did get COVID, she was sick for a month. She couldn’t leave her bed and could barely walk. Lay recovered but has had it again and spent another month in what the Mayo Clinic calls a Long COVID crash.
“It's a fatigue that’s hard to even comprehend," Lay said. "I went to the ER, and I could not keep my eyes open to tell the doctor what was happening. It was like dragging yourself out of like muck. The effort just to even say words was like a marathon."
She has had frequent and terrible migraines, especially when stressed or overly tired.
Lay used to work on an organic farm. She would walk 30,000 steps a day in the summer and not blink. She could eat anything she wanted because she was going to burn it all off. She’d sling 80-pound bags of mulch without a thought and kept bees.
“And all of that is pretty much gone," she said. "I’m hoping to have recovered enough this year to maybe start the garden back up, but I can barely walk to the end of my street without spiking my heart rate up so high that it’s dangerous."
She now carries Epi-pens because another odd facet of the condition is sometimes people get suddenly allergic to things to which they had not previously had a reaction. Soda, for instance. She takes meds to deal with the mental fog and mostly tries not to exhaust herself. Lay tries to build stamina, but if she overdoes it, it’s bad. Slow and steady always. Stress can also trigger a crash.
“The biggest thing is just, honestly, scheduling, which is such a funny thing to have your ADHD get worse, and then your whole life be based around like planning for rest and scheduling," she said. "I’ve never ever maintained a planner, and now it's like a must-do."
That mental fog and crushing fatigue are characteristic of Long COVID.
Hannah White said she used to be a normal 30-something. Now, she can't go running. She's on a maintenance regimen of two nebulizer breathing treatments, plus others, depending on the day, plus added treatments depending on symptoms. She has asthma, a potential heart syndrome, and vocal cord dysfunction.
"I went to The Eras Tour in 2023 and jokingly took a picture of my inhaler, because without it I wouldn’t have been able to attend the concert," White said. "I have good days and bad days. My breathing has improved some since being treated for Long COVID, but still isn’t anywhere near where it was pre-COVID."
Rachel Mesouani of Bloomington got COVID early, in March of 2020, even before there were tests. She got it again in August of 2021. She was just 30 years old. After the first infection, Mesouani started to notice her balance was off and her thinking was not as sharp.
“The most alarming thing I noticed in March was it started getting harder to hold complex logic in my head," she said. "And I'm a software developer, and I've got to hold complex logic in my head. And then after I got sick in August, that skill was almost completely gone."
It was so bad, she couldn’t remember how to get from one place to another just blocks away. And she’s lived in Bloomington Normal since she was three.
“I had to put it in my GPS," Mesouani said. "I think that was the moment it really hit me, something is drastically wrong."
Since then: So many diagnoses, so many doctors, recurring bouts of pneumonia. She may have a rare kind of autoimmune disease. She has fainting episodes. Mesouani is a fall risk. Since August she has had a persistent low-grade fever that spikes depending on how much she uses her brain.
“I had to relearn how to read," she said. "I had to relearn how to walk. I still can't read on a screen."
State Farm let her go in May of last year. She can’t be a software developer now. She has to wait until she wakes up to know whether she can do anything that day.
“It's terrible. It's debilitating. It will change everything about you. It is a whack-a-mole," she said. "One day, my brain is a problem, and we try and fix that, and then the next day, two other systems are out of whack."
If she over-extends, she must lay down because she can’t even hold her head up. Mesouani had been career-focused. She had hoped by this point in her life to be a lead developer. She was training for a marathon. She did woodworking. With an uncertain grip strength, power tools are now off the table. Her mechanisms for relief and recreation have gone away.
“It’s incredibly frustrating,” Mesouani said.
Invisible malady
You might think that after getting Long COVID from the vaccine, Kelly Lay would be nervous about vaccines. Not so. She said to get diagnosed she had to go to the largest diagnostic hospital in the Midwest to find a provider who had ever encountered another reaction like hers.
“Because of that and because it’s so hard and dangerous for me to vaccinate, everyone who does protects me, protects my husband, protects my family,” said Lay
Long COVID is not all that visible. People see the bubbly up personality and not the three days in bed after a social event, Lay said.
An appeal for community
“I hope people hear my story and walk away with the realization this could happen to anyone. I took the CDC [Centers for Disease Control and Prevention] COVID guidelines seriously (and still do!), was up to date on all my COVID vaccines/booster shots, yet it still happened to me," Hannah White said. "I also hope people hear my story and choose kindness and empathy toward people like me."
As the study of Long COVID continues there’s the possibility of an advance that could help. Mesouani said she’s also on year four of Long COVID and doctors say if you got the original strain of the virus, the likelihood of recovery now is low. For people who have had newer strains of the virus, she said it’s possible they have Long COVID and don’t know it because it’s milder than before.
“We know that every time you get COVID, your chance of ending up just like me, goes up and it goes up" Kelly Lay said. "And there's some evidence to show that, you know, somewhere in the market of 20 to 27 infections, your chance of long COVID is almost 100% and that seems like a lot, but like, people get COVID like two or three times a year."
She said her niece is two years old and has had COVID once. She worries if her niece has it once a year, will she be disabled when she is 27?
Lay calls for more research on the condition, a tough ask in the present federal climate and tight state budget.
The path forward
Those with Long COVID learn new coping methods to match their limits. They try to focus on the next small step. Kelly Lay said she has to be brutally honest with herself about her capacity. She said yes to being a LeRoy council member and no to small food advocacy opportunities and expanded beekeeping.
“I think if you let yourself sink too much into grief, you stop moving forward,” Lay said.
For Rachel Mesouani "coping" now includes audiobooks. She has taken up whittling to try to regain dexterity and hand strength. She persists.
“What I tell everyone, is that this is an infinite game, and the goal is to keep on playing," she said. "And that's what I remind myself. You just have to get through this moment and then you can deal with the next one. So that's really all I can do."
Mesouani is on year two of waiting for approval of disability.
Kelly Lay said she has had a lot of grace and luck in that her work before the pandemic prepared her for her current job and the employer is understanding about her limits. She is a local food educator for Prairie Fruits Farm and Creamery. Lay said many people with Long COVID become destitute.
And Rachel Mesouani said even with the harsh limits the condition imposes, there is room for joy.
“Oh, my wife gives me the most hope and the most everything, because we still have really, really good talks, and she's a tremendous help on the hard days,” Mesouani said.
The days Mesouani can get around without a walker, she said, are an “excellent thing.” For Christmas she whittled ornaments. Santa yes but also, as a joke, ornaments that look like her rescue inhaler. She took up baking. Kneading bread is fun and good physical therapy, she said.
Rachel Mesouani and Kelly Lay said they take it day by day.
