Mother 'Trapped' Inside Her Body Could Only Communicate by Blinking After Meningitis Infection
"Nobody could hear me. Nobody could understand. I was trapped, panicking, terrified, and losing control," Dr. Rikke Schmidt Kjaergaard writes in her new memoir
Severe illness is daunting enough, but when Dr. Rikke Schmidt Kjaergaard was hit with an acute form of bacterial meningitis, her life became the stuff of horror films.
In her new memoir, The Blink of an Eye: A Memoir of Dying — and Learning How to Live Again, the scientist and mother of three reveals what it was like to be trapped inside her own body — and only communicate by blinking.
“Since my recovery, I have been asked over and over what it feels like to be conscious and aware but unable to communicate; to be paralyzed and understand what people were saying around me, but only able to move my eyes from one side to another — and blink,” writes Kjaergaard, 45, who resides in Copenhagen. “If I were to sum it up in a single word, it would be loneliness. I felt alone in the world, abandoned, let down, desperate, and frightened. The worst part was that I didn’t know if I would remain like that, forever entombed in my own body.”
It was New Year’s Day 2013 when Kjaergaard first became gravely ill. On the way to the hospital, her heart stopped. Though she was brought back, she would remain in a coma for 10 days, according to the book. Kjaergaard then began the slow and painful process of coming in and out of consciousness. Meanwhile, doctors scrambled to diagnose her.
Kjaergaard’s husband, Peter, who rarely left her side during the five months she was in the hospital, was the first to notice that his wife could communicate by blinking, according to the book. For several weeks, Kjaergaard communicated with her eyes and was completely paralyzed. (Later, a diagnosis of critical illness polyneuropathy would explain her inability to move.)
“Peter kept telling me over and over again where I was, what had happened, and that I shouldn’t be afraid of anything. But I was afraid. Every time I woke up and he wasn’t there, I was terrified,” Kjaergaard writes of her moments of consciousness. (Her memory would often fail her and she also faced terrifying hallucinations.)
“Where was he? Why wasn’t he there? Who were all these strangers? Why couldn’t I move and talk?” Kjaergaard recalls. “I often cried when I woke up alone. Tears were running from my eyes, with no sound, because I couldn’t say anything. I was screaming on the inside for him to come. Nobody could hear me. Nobody could understand. I was trapped, panicking, terrified, and losing control until he would return.”
Death from meningitis, an infection of the protective membranes surrounding the brain and spinal cord (called meninges), can occur in just a few hours, according to the CDC, and while most people recover, they may be left with permanent impairments such as brain damage, hearing loss, and learning disabilities. Bacterial meningitis caused 500 deaths in about 4,100 cases in the United States each year between 2003 and 2007, the CDC reports.
Symptoms include nausea, vomiting, sensitivity to light, and confusion, according to the CDC. These signs can develop over the course of several days, usually appearing in three to seven days after exposure.
Slowly, Kjaergaard relearned how to breathe, swallow, walk, and speak on her own. Clinically brain damaged, Kjaergaard also had nine of her fingers partially removed, according to the book. When she finally returned home, the academic and artist fought to regain a semblance of her life prior to the devastating illness. Her biggest source of strength and support came from her loved ones.
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In The Blink of an Eye, Kjaergaard remembers an experience with her son, Daniel, that helped her “heal.”
One evening while at home, the author struggled to make her family dinner.
“The onions drove me crazy. I had no strength in my hands. I couldn’t bend what was left of my fingers,” she writes. “Some of my fingers started bleeding from the work. I was overwhelmed with how unfair it was. How difficult it was to resume living, and how it seemed it would always be.”
She was crying in the kitchen when Daniel found her.
“Mum,” Kjaergaard remembers him saying. “I think you have the most beautiful hands in the world.”
The Blink of an Eye is on sale now.