HERMITAGE, Tenn. (WKRN) – “It’s so hard. I have walked down the hall in my house and I see all these pictures of me laughing and smiling and I just kind of seem like a ghost going through.”

It’s an honest statement from Barbara VanMeter-Nivens who found herself in the COVID-19 ICU on a ventilator, 18 months ago.

“I thought, this is it. I’m going to take my last breath and see a nurse instead of my family,” a tearful VanMeter-Nivens continued, “and that was really hard.”

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Now home, the disease is still debilitating. “I have long-haul COVID.”

Some of the signs are clear. Her foot is in a boot from COVID toes. “My hair is just falling out, constant migraines, I still can’t taste or smell,” VanMeter-Nivens explained.

But the most heartbreaking isn’t as obvious. “I’m sorry, I have to look at my notes,” VanMeter-Nivens said while picking up a paper.

She has a difficult time remembering her own story. “Just talking to you today is very vulnerable for me,” VanMeter-Nivens admitted.

Her decreased cognitive function is part of the brain fog caused by long-haul COVID. So much so that her daily tasks must be written down for her to check off. “It’s extremely frustrating,” she said.

Especially so for the active wife and mother who has worked her entire life, until recently. “It was their decision. [My job] called me two weeks ago, and I cried. Because again, that’s losing a part of me. A part of who I was.”

She hasn’t been the only one who has been affected by the changes. “It’s true what you said about your family mourning you. They’ve mourned the old me and I’ve mourned the old me,” said VanMeter-Niven.

Unfortunately, this story isn’t unique to VanMeter-Nivens.

Dr. Jim Jackson is a psychologist at Vanderbilt University Medical Center. “We’ve got five groups, we could probably have 55 groups—the need is that great,” he said.

Hundreds of people currently participate in the long-haul COVID support sessions.

“They provide connections with people who have the same values, people who often feel marginalized in the context of politics, and they found a home in these support groups,” Jackson explained.

Jackson added long-haul COVID is caused by inflammation and insufficient amounts of oxygen in the brain. “What we’re finding is really meaningful, significant cognitive deficits of the sort that impede day to day functioning. People have car accidents, people forget to turn off their stoves, and people forget the names of friends that they know well. Problems that are really disruptive, which for many people, are resulting in issues with employment,” Dr. Jackson explained.

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Real symptoms that are affecting real people.

“You think about the future. What is your life going to be? What am I going to be able to do?” VanMeter-Niven asked.

She calls that journey ‘Barbara 2.0’. And while she’s unsure what that will look like, there’s support in the process and she says that’s enough.