How My COVID-19 Hallucinations May Have Saved My Life
After testing positive for coronavirus, this hospital employee shares her shocking experience with visual and auditory hallucinations.
Courtesy Marilyn F. Schneider
Marilyn Schneider, 57, an executive secretary of 22 years for the Cleveland Clinic Fairview Hospital, contracted COVID-19 in late March and was admitted to the hospital. Before and during her hospital stay, she experienced hallucinations and delirium—a phenomenon doctors are noticing among severe patients.
There may be several reasons for these neurological symptoms, explains Pravin George, DO, a board-certified neurologist, Neurology-ICU, at the Cleveland Clinic where Schneider works. The infection can lead to low oxygen saturation and cause some damage to the brain or seizures; the sedatives doctors give to keep ventilated patients relaxed may play a role, as well.
“Some people are also getting brain inflammation from COVID-19,” says Dr. George. “This is usually from the severe form of COVID-19 disease.”
Schneider spent seven days on a ventilator and was discharged six days after that. Here’s her story in her own words.
I started in denial
On March 27, all of us at the Cleveland Clinic Fairview Hospital who could work from home packed up our office necessities so we could self-quarantine. That evening around 7 p.m., I felt excruciatingly cold. It felt like someone stood behind me and dropped a bucket of ice water on me. I couldn’t get warm, so I stood in a very hot shower until my skin turned red. When I went to lift my leg over the tub, it felt like someone had put a rusty old rebar spike through my knee caps
I think I was still in denial that I could have COVID-19. I checked my temperature, and within a half-hour, it went from 101 to 104.5 F. It was then that I knew without a test I had COVID-19. I called my supervisor, who gave me the caregiver COVID-19 hotline number. When the healthcare provider on the caregiver hotline realized that I was immunosuppressed—I’m a breast cancer survivor—she advised me to get tested.
Meanwhile, I couldn’t shake my fever and had trouble breathing, along with two other COVID-19 symptoms, a loss of appetite and my sense of smell. The next day, which was Saturday, I had an appointment at 4:30 p.m. to get a COVID-19 test. By 5 a.m. on Sunday, I got a message that I was positive and to continue to quarantine and wait for more directions, which came later that morning.
My behaviour turned bizarre during quarantine
By April 1, I was starting to question things and just not myself. I found notes around the house that said, “Remember to feed the dog,” “Remember to put the dog out,” which is odd since my dog died six years ago. I also kept thinking my son was in the house and needed me. Yet, he is a graduate student at university and doesn’t live with me. He did encourage me to go to the hospital each time we talked or texted on the phone, but I refused to go because I didn’t think I was sick enough.
It was very frustrating for my family and me because the world was on lockdown, and they couldn’t come to me. My sister told me I called her and told her I was going to call the squad—that’s what I call the ambulance. She thought that was a good idea too, but I didn’t do it right away.
The COVID-19 hallucination that saved my life
Early on the morning of April 2, I was lying in bed and wondering why I heard voices and sounds since I live alone. When I turned in my bed, I saw a duplicate of myself staring back at me, reaching out to me, pleading for my assistance. Scary doesn’t even come close to describing this experience! Yet, this was my wake-up call. In the days prior, I believed the coronavirus symptoms were something I could handle myself. It took seeing the mirrored image of myself to jar me back to reality.
Once I reached through myself for the phone, I called 911; my next memory is standing in the street outside my home, waving down the ambulance. The moment of clarity following that was calling my mother from the ER. It was her 81st birthday, but I wasn’t calling to wish her a happy birthday; I was telling her that I was in the emergency department and I was not making it home. At that time, I truly felt I had nothing left in my arsenal to fight this virus.
While I was in the hospital, two friends who are health care workers went to clean my house and told me they saw clear evidence that I was struggling. There were blankets, pillows, and sheets scattered and my iPad was open. Notes to myself were everywhere. My wallet contents were thrown about, along with medications and thermometers. I guess this was a true snapshot of when my life was taken over by COVID-19.
Going on a ventilator—and a family “reunion”
When I got to the hospital, they started working on me right away. In the blink of an eye, I was in the ICU [intensive care unit]. Once I realized I was safe, I put my efforts into doing what was asked of me—prepping my mind and body for the ventilator. Everything seemed to be moving so fast. I just wanted to sleep. At the time I was intubated, my blood pressure spiked to 200/100 and then fell to 30/40.
I stopped breathing for a moment and had what some might say was a medication-driven vision, or hallucination, or a spiritual message. I entered a place where I was met by my husband, who had died when he was 37, a sister who died 50 years ago at the age of five, my father who passed seven years ago, my maternal grandmother, and my aunt—who was also my godmother.
In this hallucination, all of them insisted that I had to return to reality. My aunt and grandmother were nurses when they were alive. My aunt said, “I don’t know how to fix her.” And my grandmother said, “we’re not supposed to, we have been away from nursing too long.” Then my grandmother pointed to the ICU staff and said, “They are supposed to fix her.” The next thing I remember is a nurse calling my name and asking me to give a sign that I was with them (I was still on a ventilator). I gave them a thumbs up.
The hospital staff was incredible
My condition improved and declined a few times while hospitalized. I remember a time when one of the caregivers was holding my hand. I was alone, confused, and my blood pressure was erratic. I was told my blood pressure would go down when someone held my hand, so a nurse held my hand for a couple of hours—I needed it. Everyone at the hospital was amazing and encouraging.
I was on a ventilator for seven days but remained in the hospital for an additional six days before being discharged. My family communicated with my caregivers virtually. Every day when the environmental services department came into clean my room, they always said, “I hope you feel better” when they left. I wouldn’t wish this on anyone, but I could not have been in a better place. I’m fully recovered but still experience exhaustion. This disease is a huge unfinished puzzle with a lot of missing pieces. I’m just willing to be one of those pieces to help others.
My hallucinations served a purpose
I talk about my hallucinations not to sensationalize but to educate. I think that all these things happened so I could fill my arsenal and continue to fight. I felt like I was in a horror movie, and that if I shut my eyes, COVID-19 would consume me and take me away. Dr. George has mentioned in his talks that sometimes the patient gets lost in the hallucination, and living alone might have meant that I would not have survived. I tell people that the first hallucination I’ve ever had in my life saved my life!
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