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14 years
ago...
David Askew woke up
with what he thought was the flu. A few days later, he didn’t recognize his
own children. How do you live in a world where every moment is disconnected
from the last?
On Friday, July 9, 1993, David Askew woke up feeling nauseous with a fever
and a headache. A forty-one-year old computer whiz and manager of
information services for a Mississauga-based importing company, he had been
installing new computer systems and putting in eighty-hour weeks. This was
supposed to be his last day at work before three weeks of vacation at home
with his wife and three young children, but he was too sick to go into the
office. His family doctor suggested bed rest, lots of fluids and Tylenol
every four hours.
David took it easy over the weekend; he had a meeting in Hamilton booked
for the following Tuesday and was hoping to recover in time for it. His
wife, Linda, offered to drive him and asked her mother to take care of the
children.
On Tuesday morning, they got up at seven. As Linda was getting dressed,
David, just out of the shower, came back into their bedroom with a towel
around him and a face cloth in one hand, and sat on the end of the bed.
“Aren’t you going to get dressed?” Linda asked. She was rushing around to
get ready, and he wasn’t moving. She asked for the face cloth and reached
out to take it from him. “You don’t know anything about a computer disk
drive,” he said. “You don’t know what you’re doing.”
“I just stopped dead in my tracks.” Linda recalls. “I couldn’t say
anything.” She rushed down to the family room on the main floor to phone
their doctor, out of earshot of David. “David is hallucinating,” she told
the doctor, who said she should get him to the hospital immediately. She
asked her mother to look after the older kids (David John was seven at the
time and Karen was four). Then she brought David to the car, put her
youngest (two-year-old Peter) in the backseat and arrived at the Credit
Valley Hospital fifteen minutes later. Dr. Gaspar Israelian, the
neurologist on call, was already waiting, having been alerted by the
Askews’ family doctor. He examined David and asked him a series of
questions: “What is your name? What is your address? Are you married?” A
CAT scan revealed an abnormality in the right hemisphere of his brain.
When Israelian finished the exam, he turned to Linda. “Your husband has a
type of encephalitis,” he said. “I’m about to perform a spinal tap to see
if it’s viral or bacterial. We’ll know from the spinal fluid.”
“Emergency was in an uproar,” Linda recalls. “People were wearing gowns, masks
and gloves because they were concerned about infection.” But she knew
nothing about encephalitis.
“I can tell by the look on your face that you don’t know how serious this
is going to be,” Israelian added. “There’s an inflammation of the brain. He
could die within twenty-four hours. Because we don’t know how contagious
this is, I suggest that you have someone take the baby. I don’t want you to
leave. At this point in time, your husband knows nothing except that you
are his wife. You are his only link to reality.”
Linda called David’s father to explain the situation, and he came to the
hospital to pick up Peter. “David didn’t even recognize his dad,” Linda
says now. “He didn’t know his kids, or what he did for a living.”
Over the next two days, she watched her husband deteriorate. “I lost count
of the number of CAT scans. The swelling wasn’t going down. He lost control
of all bodily functions.”
“You could almost feel the infection (which turned out to be viral)
damaging his brain.” says Israelian. He explained that David may have first
contracted it through a childhood infection. “It’s a common cold sore
virus, herpes simplex. Why it goes on to infect the brain is anybody’s
guess. It’s very rare.” On Thursday, he told Linda that he would have to
inject a corticosteroid into David’s brain. “He had to do something drastic
to get the swelling down,” she says. “He said the steroid might work, or it
might kill him.” Three hours after the injection, a CAT scan showed that
the inflammation was finally subsiding.
Although the immediate crisis was over, David remained hooked up to an IV
containing acyclovir -- a powerful anti-viral agent -- for three weeks.
Linda slept on a cot in his room until the IV was removed. She remembers
every detail, but for David, of course, the whole experience is a blank. “I
remember being in hospital,” he says. “That’s all.” And there is the visual
reminder: a huge scar on the inside of his left forearm that marks the site
where the acyclovir burned into his flesh.
Israelian vividly remembers the mixed emotions he felt after saving David’s
life. “We ended up with a very intelligent guy, a computer man, who was
well-liked by everyone. But one piece was missing. The computer had no
memory. Despite early diagnosis and intervention, and the use of the
antiviral agent that saved his life, he was left with no short-term memory.
It was one of the most heart-wrenching things. There’s no other way to
describe it.”
David Askew is not alone. Amnesia and other memory disorders affect
hundreds of thousands of Canadians. The most common causes are Alzheimer’s,
strokes and head injuries. But memory loss can result from Parkinson’s
disease, epilepsy, alcoholism, neurosyphilis, tuberculosis, multiple
sclerosis, AIDS, heavy-metal exposure, brain tumours and encephalitis,
among other conditions. Although the various types of amnesia are more
prevalent among older people, severe memory problems can and do strike
people at any age.
Until recently, people like David Askew were regarded as hopeless cases, unable
to learn anything new and destined to live in institutions. However, memory
specialists at the Baycrest Centre for Geriatric Care have developed a
breakthrough program to help amnesiacs rebuild their shattered lives and
achieve some personal independence. It would be two and a half years before
the Askews would discover it, but there would be help for them.
Linda, David and I are sitting around their kitchen table, looking out onto
a swimming pool and an expansive, heavily treed backyard. They have lived
on this quiet crescent in the Deer Run subdivision of Mississauga for more
than a dozen years. Linda is tall, blond, attractive – an outgoing woman
with an air of self-assurance. David seems a little shy by comparison. The
Askews worked hard to build a more affluent version of the close-knit
family and community life they had both enjoyed as children growing up in
Rexdale.
Linda describes their life before the encephalitis. “We had good jobs in
management, and the house was almost paid off. Our plan was to pay off the
mortgage in our forties and save money for the kids’ education. In our
fifties, we were going to build a retirement home in the Bahamas.”
I asked them how they first met. “We knew of each other in high school,”
says Linda. “I was two years younger. I had heard of David because he was
very athletic.” David joins in: “I was a high jumper. I set the school
record at five feet ten and a half inches. I also played baseball, football
and did the pole vault.” As the story unfolds, they laugh and tease each
other. “I was a pretty shy guy,” says David. “I thought, if she’s that
good-looking, she’s probably taken.” They met officially a few years after
high school at the wedding of a mutual friend. “I had gone to the wedding
with my family,” says Linda. “When we came out of the church, I was about
to get in the car. My eyes met his across the parking lot. It was just
riveting. My sister said, “Will you stop staring at that guy and get in the
car.” I was wondering, Is he going to the reception? This was so
electrifying.” He did go to the reception, they danced, and they’ve been
together ever since. Life was sweet for the Askews and their three children
on Sawgrass Crescent – until that Tuesday morning in 1993.
David stayed at the Credit Valley Hospital for seven months. Over that
time, he slowly began to heal. He regained control of his bodily functions
and started walking again. But his memory was another matter. Once the
brain inflammation had gone down, the CAT scans showed that the temporal
lobes had been permanently damaged. That area contains the hippocampus,
where the formation of new memories takes place.
Scientists first learned about the role of the hippocampus in 1953, when a
twenty-seven-year-old man from Connecticut with severe epilepsy had most of
his hippocampus surgically removed in order to stop his daily seizures.
Although the seizures did, in fact, end, doctors were shocked to find that
his brain couldn’t form new memories. If anyone was introduced to him, he
would forget the person’s face and name within minutes. Forty-four years
later, he’s a seventy-one-year-old man with no memories of events that
occurred after 1953.
During David’s stay at the hospital, Linda was painfully aware that each
moment for her husband was disconnected from the last. “He would forget
that he was about to shave,” she says. “He kept repeating things over and
over again.” He was listless and showed no initiative. This active,
intelligent guy, who was always busy doing sports, playing with the kids,
fixing things around the house or working on the computer, would sit in his
hospital room not moving for hours at a time. He was also confused and
disoriented. He kept asking, “Why am I here?”
On TV, amnesia victims usually sustain some kind of head injury and then
awaken without any memory of their identity or past life. The plot moves
along until the character receives another blow to the head and is
miraculously cured. This scenario doesn’t have much to do with real life,
but it does portray an oversimplified form of retrograde amnesia, in which
a person can’t recall events that occurred before the injury or illness. It
also dramatizes the fact that memory is an integral part of identity. The
more common form of amnesia is anterograde amnesia, in which a person can’t
form new memories or recall events that occur after the injury. With
retrograde amnesia, the victim has no past; with anterograde, no future.
During David’s acute phase of encephalitis, he had both forms: he couldn’t
remember anyone from his past except his wife, and he couldn’t remember any
new information. As certain parts of his brain began to recover from the
trauma of the illness, he regained his reasoning, logic and other
intellectual capacities, as well as many of his memories up until three or
four years before the illness. He had no memories of the birth of his
two-year-old son, Peter, and he kept thinking that his grandmother, who had
died a couple of years earlier, was still alive.
After the crisis had passed, Linda repeatedly showed David pictures of
Peter. She then arranged for the children to begin visiting their father at
the hospital. After three weeks, she returned to her downtown marketing
job, but she brought the kids in every day at 5:30 for two or three hours.
These were trying times for the family. “The kids would upset him” says
Linda’s mother, Alice Laidler. “The least little bit of noise would upset
him.” A month passed before he started recognizing his youngest son; to
this day he can’t remember Peter’s birth.
While in the hospital’s rehab program, David underwent ongoing occupational
therapy to assess his memory. “It didn’t look like there was going to be
any major change over time,” says Israelian. “It didn’t look very
promising.” Linda was frustrated because the therapist spent endless hours
testing David’s short-term memory, but couldn’t do anything to improve it.
By Christmas, she started to take matters into her own hands. She brought
him home, for four days, over the holidays. The visit was a revelation. He
was more animated, more motivated than at any time since the encephalitis.
“It was wonderful,” Linda says. “The therapists said he didn’t initiate
tasks and had a limited attention span. I had to stop him from painting a
bedroom! Don’t tell me he could only do something for a limited time.” She
saw signs of the old David surfacing. “He said, ‘Let me make you a cup of
tea.’ That is my true husband.”
When he returned to the hospital, his doctors recommended that he be
discharged to a live-in facility like Chedoke-McMaster hospital in
Hamilton, or a similar U.S. institution. But Linda was adamant. “I said,
David isn’t going anywhere without me.” She intuitively recognized a truth
that specialists in the new field of cognitive rehabilitation have only
recently discovered. A person with memory impairment functions better in a
familiar environment.
On Valentine’s Day of 1994, seven months after contracting encephalitis,
David went home for good. Linda had arranged for two therapists to work
with him two days a week and the kids’ nanny was there full time. But it
quickly became clear that it wasn’t going to work. “David would say, ‘Why
are all you strangers here? He would tell this woman in her fifties to get
out. After his first week at home, I had to hand in my resignation.”
“The first year was total, constant management of David,” she says,
“twenty-four hours a day. If I left the room, he didn’t know I was close
by.”
She has used his disability benefits from work to make the mortgage
payments and gifts of food and clothing from family, friends and their
church to live on. Even with that support, though, she felt isolated: “It
was all up to me to determine what was best for David. I was going by
instinct – what made him happy, what made him mad. It was hard to explain
to the children why he was often upset. They were frightened and
embarrassed.”
Linda’s mother – who frequently took care of the children - witnessed the
impact on them firsthand. “David was violent when he first got home from
the hospital. I remember when he heaved the VCR up against the fireplace.
This made the children scared. Yet they loved their dad so much.”
David John, who’s eleven now, missed having a dad who’d play catch or go
for ice cream. “It felt very wrong. I used to have my regular dad who
really had fun doing stuff, so I wasn’t used to it. I just left him alone
for a while.”
In February of 1996, two years after David came home, Linda happened to see
a small ad in the Mississauga News. “Morris Moscovitch at Erindale College
was looking for volunteers for a study at his memory lab,” she recalls.
“David got his bachelor of commerce at Erindale. Proximity is a factor I
consider when putting David into a situation. It would give him something
positive to do.” She spoke with Moscovitch and agreed to bring David in the
following week. In the interim, she happened to catch a segment about
amnesia on 20/20. “Barbara Walters called Moscovitch North America’s most
renowned expert on memory loss. That gave me confidence.” After completing
the tests, Moscovitch referred Linda to Brian Richards.
Brian Richards and Guy Proulx are the memory specialists who developed
Baycrest’s innovative program for amnesiacs. For Linda it was a tremendous
relief: “They had seen other patients like David. One man is in his sixties
and can’t remember his wife. They knew what I’d been going through.”
How do you teach a patient to learn when he can’t remember anything for
more than a few minutes? “Rehabilitation is about learning,” says Proulx, a
neuropsychologist who first began working with brain-damaged patients as an
orderly when he was sixteen. “We teach patients to use intact parts of the
brain to compensate for severe memory deficits and learn practical ways to
function in daily life.”
There are two basic kinds of memory: short-term, which has limited capacity
and temporary storage, and long-term, which holds information that has been
processed and stored for days or decades. However, memory can be further
broken down into four subtypes that more clearly illustrate David’s strengths
and deficits. Episodic memory involves awareness of yourself in time and
place – remembering personally experienced events like where you parked
your car, what you did on your vacation, or what you ate for dinner the
night before. Semantic memory involves general knowledge of principles,
concepts, the meaning of words, facts and information about the world.
Procedural memory involves skills and routines, such as how to drive a car,
ride a bike, fix things or play the piano. And finally, prospective memory
involves making a mental note of something you intend to do in the future,
and then remembering to do it.
Amnesiacs like David, with damage to the temporal lobes, have great
difficulty with episodic and prospective memories. But researchers have found
that procedural and semantic memories acquired prior to brain damage tend
to be preserved. For David, these were a valuable knowledge base and memory
store that he could draw on.
Over the past decade, Proulx and Richards had developed a memory book – something
like a Day-Timer – and beeper system as a practical tool to replace
episodic and prospective memory. “David uses them as an external memory,”
says Richards. “The beep is the cue.” The big challenge is to teach someone
like David to remember when and how to use the system.
The memory book has a TODAY section, which organizes activities and
appointments for a given day. David’s beeper, clipped onto the book, has
settings every thirty minutes from eight in the morning to midnight. Each
evening he writes down activities planned for the following day and sets
the alarm to go off at the scheduled times. He might set the beeper for an
appointment with Brian Richards at nine, for example, a visit to the
children’s school at two, a concert at eight. When the beeper goes off, he
checks the book, pushes the stop button and performs the task. “If he sees
it in his handwriting,” says Linda, “he will act on it.” Then he checks off
the activity to remind himself that he has completed it.
Richards and Linda spent months training David to respond to the beeper by
opening the book. “We went over to Baycrest every morning for the first
week and then twice a week for three months,” Linda says. “We both knew
David had to be taught the same thing, over and over again. Beeper, go to
the book. It sounds easy,” says Linda. “It wasn’t easy. He would sleep for
five hours after these sessions. We don’t realize the physical energy it
takes to make the brain work.”
The memory book also has a CALENDAR SECTION, for scheduling future events;
a DETAILS section, in which David records experiences he would like to
remember; a MAP section, to help him get around; and a THINGS TO DO
section, for recording plans with unspecified dates.
When he began his treatment, he was totally dependent on Linda to remind
him to do everything, including take pills three times a day for colitis.
This was a source of frustration and resentment. “I’ll take my own pills,”
he would tell her. “You don’t have to give them to me.”
“He’s an intelligent man,” says Richards, “and would react poorly to being
treated like an unintelligent man.”
Learning to use this system gave him a degree of independence for the first
time since his illness. “The memory book gives me a sense of control,” he
says. “I don’t have as many wild mood swings as I did. I can put the brakes
on.” His memory hasn’t improved, though, only his ability to compensate for
it. A recent CAT scan shows the damage is the same.
He can also be more of a parent again. In his memory book, he’ll find a note
under THINGS TO DO – “Peter’s bike needs a new brake line. The tire needs
air.” And he’ll fix it. “Before”, he says, “everything was a surprise. That
was stressful. Why can’t I remember this simple, basic stuff?” Their home
was a sanctuary, but also a prison because Linda was afraid to take him
out.
One of the first big milestones in David’s move toward greater independence
was taking his son to a Blue Jays game in June 1996. Linda was supportive
but concerned: she drove them to the game, telling her son that he and his
father should go to the bathroom together so they wouldn’t get separated.
The day went without a hitch – they even took the GO train home together –
and was a great confidence-builder for David.
“Since he started using that beeper system, he’s remembering a lot better,”
says David John. “We can do a lot of things now. This summer, we went to
Canada’s Wonderland, and it was really fun. He went on a lot of rides with
us because Mom was too scared. I really feel that I have my dad back.”
Karen, a precocious and outgoing nine-year-old, says: “It isn’t scary now
because he likes doing more things that are fun. He likes bike riding and
swimming.” She’s also learned some strategies to deal with his moods. “We
have to keep him busy, so he won’t get frustrated. When he gets frustrated,
I ask him to do something. I’ll say, ‘Dad, do you want to go for a swim?”
It’s a Thursday morning in May. I’m meeting Linda and David at their kids’
school, a five-minute drive from the house, so that I can watch them tutor
some of the Grade 2 students. David and I shake hands. “Hi, Mark,” he says.
This is our third meeting, but he doesn’t actually remember me; Linda has
briefed him beforehand. He looks alert and energetic. “You seem pretty
fresh today, David,” I say. He has a quick comeback: “Usually my wife
accuses me of that.”
Every Thursday morning, David and Linda spend two hours helping Grade 2
students develop their reading skills. “I always wanted him to feel
productive,” says Linda. A year and a half ago, David began going to the
school himself on Thursday afternoons to help Grade 1 students with
reading, math and computers. On Wednesdays he works with Grade 7 boys who
need remedial help in English. He comes alone and uses a map to find his
way.
The Askews are in the school library and computer resource centre. Children
from Mrs. Philip’s Grade 2 class come in one by one with reading
assignments. David and Linda each sit with a child at separate tables
working through their assignments. He asks one young girl: “Do you know
where Australia is?” She says no. “It’s called the land down under. We’re
on the north side of the equator and Australia is on the south side of the
equator, down under.”
Another young girl, talkative and animated, is reading a book called How
Birds Live. She reads aloud: “The oyster-catcher has a long beak like a
chisel for eating shellfish.”
“What’s a chisel?” she asks David.
“A chisel is a steel piece of metal,” he says. “You can hit it with a
hammer to split wood or make a hole in a wall. It’s got a flat, pointed
end.”
“My dad has thousands of tools,” the girl says. “He’s in California.”
As I watch this exchange and David’s obvious pleasure and satisfaction, I
think of Linda’s description of him before the treatment: “He would just
sit and stare, doing nothing.”
They get to a section about the dodo bird. The girl says, “I feel sorry for
the doo-doo bird. It’s extinct.” David corrects her. “Dodo, not doo-doo.
Doo-doo is something completely different.”
Back at Sawgrass Crescent, the Askews’ garage is filled with stuff donated
by friends, neighbours and relatives for a yard sale. They need the money
for car repairs and dental work for the kids. “We had a great school
concert last night,” Linda says. “David John plays trombone in the junior
band. Karen sings in the primary choir.” Their dad was in the audience, she
says, singing, watching the kids and waving. I’m thinking about David’s
progress and how great it is that he can once again enjoy being a proud
parent. Then it hits me. What does he remember about the concert today?
“Nothing,” he says.
To preserve important thoughts, feelings, experiences, he writes them down
in the DETAILS section of his memory book right away: “Monday, October 21.
Peter got his beaver tail. November 5, 1996: What I love most about Linda.
1) Good looks; 2) Sex appeal; 3) Honesty; 4) Your love is only for me.”
Against the odds, David and Linda have succeeded in rebuilding a life and
future for themselves and their children. Linda is both an optimist and a
realist. Those qualities, and the bond she shares with David, have given
her the strength and will to gradually extend the family’s life from the
sanctuary and prison of their home out into the world. She knows what David
can and can’t do and has gained the serenity that comes from valuing what
matters most.
“David has taught all the children to play chess,” she says. “They have
their father back. Does it matter if they have to say, ‘Dad, it’s your
turn?’”
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