Today, Phil is a successful software engineer, father and husband, remarkably articulate and smart. It wasn’t smooth sailing getting there, though.
In 1964, Phil was 8, in third grade. He thinks he got the mumps from school: at that time, pre vaccine, it was going around. He had a “fairly standard course of mumps, with the swelling and so on. And then several days into that I was feeling better and was in my PJs on the floor playing with whatever it was I was playing with at the time, and I heard a ringing in my left ear and then nothing.” He could no longer hear in that ear. “And then shortly thereafter I started feeling very dizzy and the vertigo started. What happened was the world started spinning counter-clock-wise around an axis somewhere up and to the left. And it took my brain about a week to sort out and the vertigo to subside.”
Phil’s family were members of an early HMO, and the head of pediatrics there examined him and confirmed that he had encephalitis as a complication of mumps and that the “encephalitis severely damaged the auditory and vestibular nerves on my left side. There was deafness on the one side.” The vestibular nerve does a number of things, but most importantly for this story, helps maintain balance.
All his life, Phil lived with the after-effects. The encephalitis “pretty much knocked out the vestibular nerve. Many years later as an adult my intern heard the story and he made me a bet he knew he could win: he said ‘I bet you can’t walk a straight line with your eyes closed.’ And of course he was right, because I have learned to use vision to compensate for the loss of the vestibular function. Sometime it’s a little comical. When my son was young he loved vestibular stimulation. And there is a theme park up in New Hampshire geared towards little kids and they had this lovely antique gravity driven roller-coaster. As roller coasters go, it’s very gentle, designed for little kids and their parents. I took my son on it once; he loved it, but I was white-knuckled and ready to heave everything in my stomach because I couldn’t deal with the motion of the roller coaster car.”
What was left of his vestibular function collapsed during final exams week in the spring quarter of his sophomore year in college. “What happened was I got this series of vertigo attacks and ultimately it landed me in the university’s teaching hospital. And they did a work up and pretty much concluded that it was the last gasp of the vestibular nerve on the left side. They followed me from then until I graduated, and when I graduated they gave me a referral to somebody at Mass. Eye and Ear. When I got to Mass. Eye and Ear this particular provider was no longer there and they had me see somebody else who apparently did not get a good grade in Bedside Manner 101, because when he was examining me the first thing he said to me was, ‘by all rights this should have been bilateral’.”
“The other thing that was damaged of course was my hearing. When they did neurological testing back after I recovered from the mumps encephalitis I had some bone conduction because it was my right ear picking up sound transmitted through my skull but nothing from my left ear. And so the other sort of comical thing is, if you make me try and rely on directionality of sound – I’m completely lost. If you hide in the bushes and call my name I’m going to have to use vision — I’m going to have to turn in a 360 degree circle looking for signs of motion visually.” Games like Marco Polo were not for Phil.
Phil considers himself lucky, on many levels. He points out that the encephalitis could have been much worse: “I think I was very lucky, given that I’d contracted mumps encephalitis. There was a child two years younger than me in my elementary school who died of chicken pox encephalitis.” And “if this guy that had flunked Bedside Manner 101 had been right, I would be deaf. Fortunately I have the hearing on my right side.”
He says: “The other thing I was lucky about – I gather mumps can result in sterility. But I am the proud father of two wonderful grown children. “
No, he does not think any of the childhood diseases are benign. “There was no measles vaccine, so I had measles. I think that’s when I hit my record for body temperature, I ran 105° (Fahrenheit) fever for a little while, so that wasn’t particularly fun. I hope I don’t get shingles because I had varicella. Might as well mention rubella too. Rubella was part of the picture too – I know a woman my age who is on the autism spectrum, but her autism had a known cause: her mother contracted rubella when she was pregnant with her. She was a rubella baby.”
Lucky as he was, he’d rather not have had the disease to start with. “Needless to say that is something I would rather have not happen. This is one of the reasons I think the whole anti-vax movement is particularly irksome. I think it’s crazy to let these childhood diseases take their natural course.
Acknowledgements: I am very grateful to Phil for sharing his story and helping with the draft and to Alice Warning Wasney for comments on the draft.