The interview subject has given permission for this content and her identity to be shared.
Everyone experiences illness or disease at some point in their lives; it’s an inevitable fact. Everyone’s illness experience changes them in some way and affects the person they become in the future.
It was May of 1975 when Ellen Laurence was sitting in the tall grass behind the house she shared with her husband Norm, and her 18-month-old son Chris. Behind her, an abandoned church sat, with water running through the basement, as she hand-clipped the grass around her. At the age of 25, the last thing she remembers before slipping into a coma because of a mosquito bite, is the feeling of the air blowing on the grass, and the sound of the water running through that church basement. The moment represents a divide between two halves of her life, but how did her coma affect the person she is today?
Ellen was a labor and delivery nurse, but because of the need to take care of her young son, she was picking up shifts at a nursing home in Boulder, Colorado. While working in May of 1975, she realized she couldn’t see out of the sides of her eyes—she was losing her peripheral vision. Norm came to pick her up, and they rushed to the Emergency Department at Boulder Community Hospital—the same hospital she worked at as a nurse.
Bloodwork was drawn and found to be normal by the doctor who was on-call that night. The doctor—who Ellen referred to as “a jerk”—asked whether she had been fighting with her husband because he believed the vision loss to be psychosomatic. The insinuation that she was fighting with her husband, and that there wasn’t a physical cause of her vision loss was humiliating to her, as her suffering was very real and her husband overwhelmingly kind—not the kind of person to pick fights. She was sent home without answers or treatment, and they were only left with the doctor’s lasting accusation.
Over the next week at home, Ellen’s symptoms worsened. Following the vision loss came weakness, loss of motor control, and even an altered level of consciousness where she was unable to speak coherently or communicate with anyone. She was taken to another doctor where a spinal tap was performed. In a spinal tap, a needle is inserted between vertebrae in the spine, and a sample of cerebrospinal fluid is taken to test for infection. The spinal tap showed an elevated white blood cell count—indicating an infection somewhere in her body. She was admitted to the hospital where she stayed for a week receiving broad spectrum antibiotics to try and combat the infection. After a week, she was sent back home despite her unchanged physical state because the doctors insisted the infection had subsided.
The infection, however, had not subsided, and while at home Ellen only got worse. Her mother and sister, Julie, took turns watching her and her young son while Norm was at work because she was physically unable to take care of herself. There came a point when Julie had to hand feed her and dribble water into her mouth to make her eat and drink. After a few days, Ellen was losing weight and her condition was deteriorating, so her family demanded the hospital readmit her.
In the hospital, Ellen slipped further and further into unconsciousness, while the doctors strained to figure out what was causing her symptoms. Eventually, even general hospital care wasn’t good enough to keep her alive, so she was moved to the Intensive Care Unit (ICU) where she could be given greater care. But while in the elevator on the way down to the ICU, she stopped breathing and her heart stopped. She was “coding.”
The nurse and doctor in the elevator started CPR, and the doctor did an emergency intubation where a tube is put down her trachea so that they could manually breathe for her. Ellen vividly remembers climbing up a rough, ridged pipe towards a bright, white light. With warmth, beauty, and peace coming from the white light and filling her after weeks of pain, confusion, and cold, Ellen was ready to let go. She remembers needing to keep her toes curled around a ridge on the pipe or she would let go and die. Out of the light came a voice that told her, “It’s not your time,” and despite the warmth and peace of the light, Ellen trusted the voice and kept fighting. By some miracle, the doctors were able to get her pulse back—a feat that is often not accomplished after cardiac arrest despite what movies and TV shows might suggest.
She was still unable to breath on her own so a hole was cut in her throat and a tube connected to a ventilator that would breathe for her was inserted. Despite having a heartbeat, the Electroencephalogram (EEG) that monitored her brainwaves showed no activity unless the bed was bumped. When brain waves shown on an EEG are absent, it is believed that the person loses all of what allows them to think, move, function, and live life (Young 474-478). Ellen was declared brain dead by the doctors, and Norm, who was only 27 at the time, was asked for permission to perform an autopsy. Enraged at the thought, he declined, believing that his wife was still there, and that there was still hope she would recover.
Over the next three months in the ICU, despite her eyes being taped shut, Ellen remembers the quilted pattern of the bedspread in the ICU, a collection of colors seared into her mind. She also remembers the electrical outlet the ventilator was plugged into, and thinking “my husband is a clutz, I hope he doesn’t run into it.” Someone was always by her side in the ICU, whether it was family, or the labor and delivery nurses that she worked with from the floor above.
One night, the hospital called her husband, parents, and sister while they were sleeping, saying that they should rush to the hospital because she most likely wouldn’t make it through the night. Sitting outside her room, Norm waited all night listening to alarms go off while doctors and nurses rushed in and out of the room trying to save Ellen. By some second miracle, she made it through the night.
Soon after that night, a specialist was brought into the hospital to consult on her case and try to come up with a diagnosis. He said it was most likely “rampaging multiple sclerosis” which would mean no chance of recovery. At best case, the doctor said it could be viral encephalitis, but that they wouldn’t be able to confirm it until an autopsy took place. The same doctor performed a brain biopsy where a small piece of the brain is taken to test for different illnesses or infections. The brain tissue taken came back necrotic—the tissue was found to be dead—and the diagnosis of brain death was further supported. Funeral arrangements were made reading July ____ 1975 with all information but the date filled in, as it seemed they were now just waiting for her body to die alongside her mind.
As a last resort, her uncle—a veterinarian—read about a researcher in South America who was developing a vaccine for viral encephalitis. He convinced the researcher to send a vial, but it was confiscated by the FDA.
After a few weeks with no changes, Ellen was moved from the ICU at Boulder Community Hospital to a rehab and chronic care ward at Boulder Memorial. It was thought that she would be moved to the “Med D” ward for those in a vegetative state, but the nurses eventually decided against it as she began to come out of her coma.
Ellen’s EEG began to show brain waves, and she began to open her eyes over the coming weeks. While more conscious, she was still unable to communicate in any way, move, or even swallow. She tried to communicate her wants with her eyes because she couldn’t speak, but she was largely unsuccessful. Because she wasn’t able to swallow, the nurses were going to put in a g-tube—a tube into the stomach to be fed through. Right before the surgery to put in the tube, Norm brought a McDonalds cheeseburger into the room, and put the smallest piece into her mouth. Ellen swallowed the bite of cheeseburger, the surgery was cancelled, and she later said she will never be able to forget the taste of the mustard that was on the burger ever again.
While in long term care, Ellen began to regain motor function bit by bit. Starting with small hand and head movements because she was so weak from the infection, and later progressing to full motor function. She wasn’t able to communicate for a while even as she regained motor function, and she remained confused and disoriented to her surroundings.
Because of her confusion, she tried to escape from the hospital multiple times after she regained motor function, and while weighing only 84 pounds, she succeeded at escaping. Hitchhiking her way across east Boulder, she tried to get back to Lewisville, Colorado and to her old life because she believed that was how everything would make sense. While driving back from work a few hours away in Denver, Colorado, Norm saw her getting into a stranger’s car while stopped at a stop light and was able to take her back to the hospital.
When able to communicate again, she was still disoriented, and her personality had changed. Because of the confusion and disorientation, she never knew where she was, and she quickly became frustrated and angry because of it. While in the elevator with a neurologist she thought was mean, she ripped off the doctor’s glasses and crushed them under her foot.
No one knew how long she would have to stay in the hospital, if her personality would go back to the sweet, loving person from before the infection, or what cognitive functions she would regain. Because of the uncertainty, her parents sold their house on the other side of Boulder to move closer to the hospital and care for Ellen’s young son Chris. The selling of the house took an emotional toll on Norm because it was the reason he met Ellen. Norm, an architect, was hired by Ellen’s parents to design a house for them, and during the project, they fell in love. The selling of the house represented the disappearance of the last part of the life they had together before her coma.
Because the new house was closer to the hospital, Ellen was able to be released to home care with only regular physical therapy and occupational therapy appointments to improve her strength and mobility. Despite her improvements physically, she still wasn’t one hundred percent cognizant of where she was and wasn’t able to be trusted alone. At one point she tried to unscrew a round light fixture from the ceiling because she thought it was a portal. Afraid that she would try and escape again, her husband even tied a rope connecting his ankle to hers while they slept so that he would be woken up if she tried to run away.
Little by little, her cognitive function improved, her personality returned, and she was able to move back to Lewisville with Norm and Chris. Not even two months after returning to Lewisville, she was able to return to work as a labor and delivery nurse in the same hospital she had been a patient at for over three months.
The doctors diagnosed it as viral encephalitis as she made her improvements. Viral encephalitis causes the brain to swell because of an inflammatory response by the body in response to the virus’s invasion. As the infection subsided over the many months it took for her to recover, the pressure on her brain decreased, and her neurologic symptoms were reduced until they disappeared altogether (Said paras 9-14). The infection likely came from a mosquito that had bitten a bat or snake from South America where the virus in endemic.
“I’m no longer afraid of dying,” said Ellen, “there was such warmth and peace that I’m not afraid anymore.” She also said she now knows the depths of Norm’s love for her. At only the age of 27, he stayed by her side, took care of their son when he wasn’t at work, and never gave up on the hope that she would live. Illnesses and experiences in healthcare don’t only affect the person suffering, they effect the family members surrounding them as well. Norm is now quick to cry and show emotion, a trait that Ellen believes stems from months of uncertainty while she was in the ICU.
A few years after recovering, they had a baby girl, Becca, who was born healthy. A few years after that, they had another girl, Annie, who is special needs and has a very limited ability to communicate with the world. While not exactly the same, Ellen believes that her inability to communicate her wants, needs, and thoughts in the coma made her a better mother to Annie because she is able to empathize with the frustrations Annie experiences. Though no one will know exactly what Annie experiences, having a mother who experienced some of what she goes through regularly has helped to give her a better life.
Ellen also believes her experience as a patient changed the way she cared for her patients as a nurse. Having been in the same vulnerable position as her patients, she learned how to be sensitive and understanding to their fears and all of the uncertainties that come with illness. She tried to comfort and physically touch all of her patients because touch was what she found most comforting when she was sick. The care and attention put towards a patient may not be what’s thought of traditionally as a form of medicine, but it is a form of healing. Comforting a patient can go a long way in their recovery and overall experience in the hospital. Though nobody would ever want to go through something like Ellen did, she takes solace in the fact that because of her coma and infection she was able to provide others with better care and understanding than they would have received before. She believed she was shaped for the better because she was able to better help her patients and her daughter Annie through their own illness and disease.
Laurence, Ellen. Telephone interview with the author, 16 Nov. 2021.
Said, Saema. “Viral Encephalitis.” StatPearls [Internet]., U.S. National Library of Medicine, 11 Aug. 2021, https://www.ncbi.nlm.nih.gov/books/NBK470162/.
Young, G. Bryan. “The EEG in Coma.” Journal of Clinical Neurophysiology, vol. 17, no. 5, 2000, pp. 473–485., https://doi.org/10.1097/00004691-200009000-00006.
Sanchez, Paula, et al. “EEG Recording of a 61-Year-Old Woman in a Coma State, after Termination of a Generalized Tonic-Clonic Seizure.” ResearchGate, Sept. 2017, https://www.researchgate.net/publication/319607817_Outcomes_of_patients_with_altered_level_of_consciousness_and_abnormal_electroencephalogram_A_retrospective_cohort_study.