Harriet as a young girl. Picture provided courtesy of Harriet.
was born in August 1965, by far the youngest of six children: her next older
sister was 8 years older. The family did not have much time to just enjoy the
new baby. In December 1965, the family was headed to a Christmas concert, baby
Harriet cradled in her mother’s arms (pre-carseat days). Their plans changed
when the baby started seizing. The family rushed immediately to the Emergency
Room. The hospital intake form had “measles?” written on it next to the baby’s
vitals and symptoms (“seizures”). During the next few weeks that Harriet spent
at the hospital, the diagnosis was confirmed: measles that led to encephalitis.
Harriet’s condition was serious: her family did not know if she would live or
die. The hospital told them, explains Harriet, “that even if I did live, I
would be so severely mentally retarded that they should put me in a home.”
Harriet survived, intelligent and articulate. She did,
however, suffer lifelong damage. She says: “I know I have scar tissue on my
brain because when I was nine or ten I was taken for a CaT scan, at that time
it was a brand new expensive machine, it was so exciting and I was to be one of
the first ever to use it… and I
moved. So we
I had to do it again. The neurologist told my mother about
lesions on my brain. My sister remembers it described as shadows on my brain.”
The cost to her was physical, cognitive and social.
A Childhood Clouded by Risk:
of the costs of the encephalitis was uncontrolled status (epilepticus) seizures,
meaning one seizure after another after another for more than an hour (a
potential consequence of viral encephalitis
). This meant Harriet was repeatedly
hospitalized. It also meant she needed extra protection against disease. To
protect her, she was kept at home, not sent to daycare, and her parents had to
choose a caretaker who took no other children (except for Harriet and her own
children). Childhood seizures often resolve at age 6 or 7 years so her
schooling was delayed. Harriet did not
go to preschool or kindergarten but did enter school for Grade 1. While her
parents did not completely isolate her, wanting her to have a normal life, she
was allowed to play with only one or two kids at a time, and her parents made
sure the kids she played with were not sick. Her parents worried constantly, unsure their
youngest will survive her childhood.
missed 28 days of her first grade, and had two or three hospitalizations that
year, failing first grade. Two events stand out in her memory: “I was left in my sister’s care one time and
when she came into check on me I was not moving. She was screaming and crying ‘I killed her, I
killed her. She’s dead. Mom and Dad are going to kill me.’ I must have been having an absence
seizure. One of the bonuses of measles
encephalitis is tormenting your older sisters.”
another event, “two of my sisters took me for a treat to McDonalds. This was not like it is now when people eat
fast food regularly: this was a once in a year special occasion. I must have said I felt tired and this set off
the panic. I was grabbed and rushed out
of there to the hospital emergency room and one of my sisters was yelling that
I was about to die. I was fine and I am
still pissed off (a little) about leaving my special treat.” Harriet’s sisters
believed that fatigue was an indication a seizure is about to arrive. That was
not the case: fatigue was a separate and additional price of the encephalitis.
Harriet was 7, her medication was changed. She is not sure if it was the change
of medication or just growing up, but she never had another seizure as a child. The
seizures returned in her mid-twenties. Harriet says: “I was hooking up the TV. My daughter heard a strangled cry
then a loud thump and ran down the stairs and saw me seizing. My daughter and
her friend called 911 and she said, ‘my mother’s in shock!’ The operator,
trying to understand her, asked: ‘she’s been shot?’ And she said ‘no, she was
shocked. She was hooking up the TV and she was shocked.’ And the operator goes,
‘oh, she was electrocuted?’ That’s too big of a word – she was only nine.
Luckily it was just a simple seizure, not like when I was a child. It
aggravates me when other parents describe their child’s simple seizure as their
worst nightmare, I know it looks scary, but if a couple of nine year olds could
handle it then other people can as well.” Harriet’s neurologist was not
concerned either despite Harriet’s history. Harriet would have two more
seizures before it was decided to use medication.
Harriet and her daughter as a baby. Picture provided courtesy of Harriet.
The physical consequences of the encephalitis range from unpleasant
to life-threatening, brought here in no particular order.
Harriet describes a variety (1001 types) of migraines that
affect her. For brevity, I will only mention a few. She has the classic,
painful migraines, various optical migraines, and bizarre neurological
migraines. In one type of optical migraine words cannot be recognized as such
and individual letters act like pixels creating a picture.
The most severe migraines she has leave her completely
unable to respond. She says “I don’t know my own name, I can’t do simple tasks
that I’ve done before, and at the most extreme I lose postural control and I
slump over and freeze” (though she has never actually fallen). These episodes leave her completely helpless.
She has hyperaccusis, a situation where “your brain amplifies ordinary sounds, I
hear my hair cracking.” “You can’t sleep because the pillow makes too much
noise. I hear the wires in the wall.” Earplugs don’t help, because you would
hear the sound of the earplug.
In addition, she has both high and low blood pressure. She
explains that although most people worry about high blood pressure, low blood
pressure can cause the heart not to beat enough and “you can’t get enough blood
flow.” So Harriet has to carefully monitor her blood pressure.
She doesn’t handle heat well, which she explains is common
among those that suffer brain injury, but in her case, it’s made worse because
she does not sweat properly (not because of dehydration) and she cannot always
properly sense temperature.
She suffers from non-recoverable fatigue, which she
describes as “not brought
about by exertion, and not curable by rest. It’s brought on by doing your usual
routine. Though I do find that one of the most common triggers is
decision-making, going shopping. It’s a severe fatigue, and you can’t rest your
way out of it like normal fatigue, and that’s probably one of the most
debilitating things.” That is one of the reasons she is unable to work.
Cognitive Impairment and its Social Costs:
number of cognitive problems make social interaction much harder for Harriet
than for most people.
Harriet is unable to recognize faces. This caused problems
for her throughout life. She says, “I
grew up in a small town where everybody knew everybody, and I didn’t know a
soul. I have to depend on people recognizing me. They would think I was stuck
up because I didn’t acknowledge them on the street, but I didn’t know who they
today, “if you change your hair I don’t know who you are. If you stop me in the
grocery store and I’m used to seeing you in the office I don’t know who you
are. Even my daughter – it’s kind of funny, but I can recognize the way she
walks. I have to do a great deal of thinking so I can recognize her, but
basically I recognize her clothes, if she changes her hair and gets news
clothes I don’t know who she is, and I have to depend of how she walks, because
I can recognize how she walks. But you
show me a picture of her face and I might not recognize her.”
combination of lack of facial recognition and delayed cognition, which she also
has, leaves her vulnerable to manipulation: “when someone is being nice to me I
can’t sense if someone is untrustworthy.” On the other hand, she may say things
that are not socially appropriate (“the blurts”). Or be accused of manipulation
because of responding directly to question (“terminal honesty”)”.
memory problems – problems with word recall and with remembering appointments
and what to do. Together with delayed cognition, this too makes social
interaction and daily life complex: “the
only times I’m able to respond during a conversation is to use routine
building. You have to prepare for every little thing. Even for normal things in
your daily life you have to build routines into them.” Luckily, “…technology
has caught up and for rare events you can program them into your smart phone, and it would beep and warn you
that it’s coming up. And that’s because otherwise it just doesn’t exist.”
Harriet suffers from an exaggerated startle reflex and a parasympathetic
nervous system disorder. This means that her body overreacts to situations.
Harriet gives an example of her computer crashing, and her reaction was to run
downstairs and find herself sitting in a chair, her body vibrating with rage
but calm in her head. She explains how it can exacerbate social interactions:
“if I complain at a store, if there’s a sensitive person there, they will
recognize all the non-verbal signals that my body is giving off. I might be a
little frustrated but my body overreacts, and I’m giving out signals of rage. They’re
reading this rage, and I can’t get them to calm them down to listen to what I’m
Harriet says: “Because of the contrived
controversy about the MMR, I’ve been trying to explain to people. Because
vaccines are so effective, people no longer know what measles looked like. I
consider myself on the mild side of the severe consequences of measles,
especially being four months old – I was most likely to die in that age. I was
in absolute terror when I first learned about SSPE
[an incurable and fatal
complication of measles; see also here
], because I
was trying to figure out why all these changes were happening to me. It was 10
minutes of absolute terror reading about it, and then it was, okay, this is not
it, it would have killed me years ago, this is something else. But that was
terrifying.” Everytime I reach a different life stage(school age, puberty,
mid-twenties, and now perimenopause) I have different cluster of symptoms. My neurologist sent me for a MRI because of the changes and “weird”
brainwaves. She concludes: “I’m trying
to speak out. People just don’t know that this is the real risk. It terrorized
my family for years.”
Acknowledgments: Thank you to Harriet for sharing her story and working with me on the writing, to Alice Warning Wasney for reading my draft, and to Dr. Nathan Boonstra for his comments and help in understanding the medical issues.