Community Rallies Behind District Schools Nurse With Long COVID

SANTA MONICA, CA — Maya Lindemann, 31 at the time, was on a jog in the early days of the COVID lockdown when a persistent cough and difficulty breathing stopped her.

Just a week later, she had so much difficulty breathing on a Zoom call that her coworkers called 911, Lindemann said in her testimony before the California State Senate hearing on long COVID. She would continue to have multiple episodes like this.

She was continuously dismissed by healthcare providers and first responders, who kept telling her nothing was wrong — but her physical symptoms and fatigue were only getting worse, Lindemann told the state senate.

The Santa Monica-Malibu Unified School District nurse would realize she had long COVID and a slew of related illnesses that would render her bedridden for the next year and a half. She is now looking to complete an expensive brain surgery and specialized treatment to lessen her symptoms, according to a GoFundMe campaign for Lindemann.

Community members have donated to help cover a number of Lindemann's healthcare costs related to her conditions. The GoFundMe campaign for Lindemann raised $52,117 in just a month.

Lindemann is an integral part of the Santa Monica and Malibu school communities, which explains the outpouring of support for her, according to Gail Pinsker, the district's Community & Public Relations Officer.

"Maya was a beloved nurse in our district who brought great care, concern and enthusiasm for student health and welfare to her work every day. Her kindness, skill, and positive outlook was welcome and appreciated on the campuses she served," Pinsker said. "Maya was an integral part of our early Covid response, battling through her own challenges with it at a young age, as medical professionals were just learning about the virus. She is a fighter and battled hard to continue working through ups and downs until her condition completely debilitated her. Her effervescent personality and contribution to our nursing team and student health and success is greatly missed."

Lindemann's long COVID resulted in a number of connected diseases, including severe chronic fatigue syndrome, an illness marked by intense fatigue. Energy exertion — even as small as talking can exacerbate it, according to the GoFundMe and Center for Disease Control and Prevention. Severe patients like Lindemann often describe the condition as "living death," according to the GoFundMe.

"At its worst, Maya describes her illness as steps away from being 'locked in.' There are days, weeks, months at a time during which her body becomes so crashed that she cannot even reach over to pick up a drink, and her brain feels like a staticky tv on fire," according to the GoFundMe.

Lindemann has also developed connected illnesses like Postural Orthostatic Tachyardic Syndrome, a condition that causes heart racing, dizziness and fatigue when going from lying down to standing up, according to Cleveland Clinic. Lindemann developed Mast Cell Activation Syndrome, which causes gastrointestinal issues, according to the GoFundMe page.

Lindemann is now looking at treatment options, which are extremely expensive, according to the GoFundMe page.

"Thankfully, an Arizona-based team of neurologists that specialize in complex cases like Maya's has given her hope that she can undergo treatment and surgery that they believe will lead to an improvement in her debilitating symptoms. Even with great insurance, the specialty care, treatments, surgery, co-pays, medications, and supportive costs (caregiving, lodging, transportation) are unbelievably high," the GoFundMe reads.

The GoFundMe breaks down how donations can help Lindemann through her treatment: $10 can purchase multiple days of hydration packets necessary to manage a nervous system disorder; $50 is equivalent to one copayment for pain medication; $100 is a physical therapy treatment to relieve symptoms and $500 pays for one round of injection therapy.

Her surgery and hospital copay will be over $15,000, with a monthly charge of $10,200 for at least six months of surgery recovery. The GoFundMe goal is set at $75,000.

"We are hopeful that this surgery and treatments will help her regain her health so she may return to the work she loves and her active lifestyle," Pinsker said.

Lindemann reminded the state senate to keep long COVID patients in mind when considering how they react to the pandemic.

"As the world eagerly moves on to 'living with COVID', consider for a moment what that means for those of us for whom the destruction of COVID never left our bodies. We are stuck in the chasm between the accepted outcomes of death and recovery," Lindemann said in her address to the state senate.