A Personal Tale of Post-Infectious Encephalitis
Encephalitis, often called sleeping sickness, made an appearance in Buffalo, New York, in 1946. Among the victims who survived was six-year-old Trumbull Rogers, now Associate Editor of the Annals of the New York Academy of Sciences. Below are his recollections of the life-affecting experience.
Published April 1, 2002
By Trumbull Rogers
Academy Contributor

My mother’s entry under “Illnesses” in my baby book was precise: I contracted measles on April 6; improved by April 11; but became extremely drowsy by the 12th. Dr. W. Pierce Taylor, our pediatrician, called in another family friend, Dr. Douglas P. Arnold. Together they concurred in a diagnosis –– encephalitis.
An inflammation of the brain, encephalitis viruses come in many varieties, some named for where they were first diagnosed –– Central European, Murray Valley [Australia], Japanese or St. Louis encephalitis. Currently, we are most aware of the variety known as West Nile Virus, an arthropod-borne (arbovirus) infection that made its first appearance in the United States in the summer of 1999. (See West Nile Virus: Detection, Surveillance, and Control, Dennis J. White and Dale L. Morse, Eds., Annals of the New York Academy of Sciences, Vol. 951, 2001, for more on this virus.)
But not all forms of encephalitis are caused by the bite of the “dread tsetse fly” or Culex mosquito. One example is post-infectious (in my case, postmeasles) encephalitis, which is an acute disseminated encephalitis characterized by perivascular lymphocyte and mononuclear cell infiltration and demyelination. It is thought to result from the weakening of the immune system caused by the original measles virus.
1 in 1,000 Cases
According to a 1997 article by Dr. Michael J. McKenna, of the Massachusetts Eye and Ear Infirmary in Boston, post-measles encephalitis “occurs approximately 1 in 1,000 cases. Usually it manifests three to four days following the acute illness and is clinically characterized by seizures, obtundation and coma. The mortality rate of central nervous system involvement is approximately 25%. Half of those who survive have permanent sequellae, including mental retardation, seizures, motor abnormalities and deafness.” (“Measles, Mumps, and Sensorineural Hearing Loss,” by Michael J. McKenna, Immunologic Diseases of the Ear, Joel M. Bernstein et al., Eds., Annals of the New York Academy of Sciences, Vol. 830, 1997, p. 292)
After Drs. Taylor and Arnold made their joint diagnosis, they arranged my transfer to Children’s Hospital in Buffalo. I have no memory of any of this prior to finding myself lying in a large room with high windows. However, I remember hearing the occasional echo of a door closing somewhere far away, receding footsteps and distant voices. I was alone in a place that shifted each time I drifted into consciousness. Events that no doubt spanned only an hour or two seemed like several days.
Little Hope for Survival
Early on, the doctors told my parents there was little hope for my survival aside from one slim chance: a new drug had shown some success in treating the condition, but it was experimental. They wanted to try it on me, if my parents were willing. I’m not certain, but this drug was probably a corticosteroid, even though it was not widely available for human use at the time. Although it has never been proved that steroids are effective against post-measles encephalitis, many physicians use them today in treating this disease. I’m told my parents’ decision to let the doctors use the drug –– whatever it was –– saved my life.
I gained consciousness in my hospital room several days or perhaps a week after my arrival there. But I was not completely cured. My left arm was paralyzed and I had lost the ability to speak. Although there may have been other symptoms, these are the ones I recall most vividly.
By paralyzed, I mean that, my left arm, when left to its own devices, flexed so that my curled fingers rested against my left shoulder. To keep the arm straight, the doctors attached it to a splint, which made lying on my left side awkward and uncomfortable. It also meant that I needed assistance when I wanted or was required to turn over.
When my nurse changed the bandage, at least once daily, she positioned my elbow near the center of the splint. She then forced my arm down until it lay flat. Then she wrapped the clean bandage around both, securing the arm in place. I don’t recall feeling any pain during this process, though later I would.
Returning Home
In the matter of talking, I remember being restricted to two rudimentary forms of communication: “Uh-huh” (for yes) and “Uh-uh” (for no). This condition lasted for what, in retrospect, seems like a long time, an impression that is borne out by my baby book. It has me beginning to talk on April 27, the day after my seventh birthday and 16 days after I entered the hospital.

On Friday, May 3, I was taken home and put to bed in one of the two second-floor bedrooms that looked out on the backyard. I was now freed of my hospital existence and could continue my recovery in the familiar surroundings, sounds and smells of home. But I still wore my splint and needed around-the-clock nursing.
I have no idea how long my convalescence lasted, but it probably continued until the end of May. Although I’m sure my brother and sister were curious about what had happened to me, I don’t remember seeing very much of them. I’m sure their visits were kept to a minimum.
Soon after my recovery, I was taken to a room that I recall being decorated with cartoon-like characters and was hooked up to an electroencephalograph. There must have been at least two sessions, because I can remember more than once picking patches of dried glue out of my hair, like scabs off my scalp.
“Awakened” with Dopamine
Although I was aware of having been close to dying, my child’s mind had no conception of what that really meant. So, even in adulthood, when I said the words it was like mouthing a memorized set piece that had no core connection to me. People sympathized, and I enjoyed that, but inwardly I felt like a fraud.
That feeling ended on December 7, 1998, however, when I watched “The True Story of Awakenings” on the Discovery Channel. The program included some of Dr. Oliver Sacks’ (Awakenings, HarperCollins, New York, 1973) “home movies” of his “frozen-intime” patients after he “awakened” them with dopamine.
But more arresting were the images of other faces, those forever contorted into idiot expressions (“Did I look like that?”) and “frozen” bodies; hearing a sister’s tale of her brother’s loss of artistic potential; seeing a young girl go through an ordeal similar to my experience.
Watching this program was like seeing myself as I had been, as well as how my life might have gone. This revelation –– of what I was exposed to and then escaped from without damage, of how fortunate I was in my doctors and nurses and in my parents’ courage in letting me be the guinea pig –– still resonates
Also read:The Rising Threat of Mosquito & Tick-Borne Illnesses