A Very Special Brain
Jan. 7, 2004 -- 60
Minutes II -- CBSNEWS.COM
The brain, the most complex of all organs, defines us in more ways
than we can even think about. There are about 35,000 genes in the
brain, and if only a few of those are missing, the result can be
devastating and fascinating.
Williams Syndrome is a rare birth defect in which about 20
genes are missing. Six years ago, correspondent Morley Safer
reported on people diagnosed with Williams Syndrome. Their stories
were so fascinating that 60 Minutes II decided to go
back to see how they’re doing.
But first, here’s a look back at 1997 in this 60 Minutes
classic.
Gloria Lenhoff remembers more than 1,000 songs, yet she can’t add 5 plus 4.
Michael Williams can play almost anything, yet he can’t go out the door without getting lost.
Meghan Finn studies music in college but can’t tell left from right.
60 Minutes met these remarkable people at a music camp in Massachusetts -- people with profound disabilities but with an equally profound passion for music. They often have unusual, almost elfin features. Their IQs average in the 60s, but they have the social skills of talk show hosts, what’s been called “cocktail party personalities.”To a stranger, any sense of their handicap quickly disappears, and one is overwhelmed by their friendliness and openness.
“Music is a huge part of my life. To me, music is like soup. Music comes down to your throat. It feels so warm. So music is like soup. It tastes good,” says Meghan.
Gloria says she can sing in 25 languages: “I could sing in Macedonian, Korean, Yiddish, you name it.”
Among the things that seem to be common among people with Williams is extremely sensitive hearing. It’s remarkable. They can even hear whispering.
But part of that really sensitive, acute hearing is a negative reaction to loud noises. For example, thunder sounds like a cannon going off to Meghan: “Just shot off, right next to our house, and it made me cry so hard.”
For the most part, they are among the happiest people you’ve probably ever met. And they can’t stop smiling. But are they really happy most of the time?
“Yes, I am,” says Bob. “I am, too,” adds Jason Dennis.
Michael Williams had always
known he was different, but he only learned last year that his
condition had a name. For the first time, at the music camp, he met
other people just like him.
“Somehow, I felt that I fit in,” says Michael, who is most
comfortable at the piano. But as a child, his parents never dreamed
that he would be capable of handling the complexities of the
instrument.
“My other kids had piano lessons. He didn’t, we didn’t think he
could do it. After they went out to play, he would sit down – for
hours on end, for days on end. And all of a sudden, one day he
played a song,” says Frank Williams, who admits he was devastated
when his son was born and he clearly wasn’t normal.
But that changed a long time ago. “We were blessed,” says Michael’s
father.
“The opportunity to study an individual with Williams Syndrome is
exciting. It provides a window on brain development,” says Dr.
Barbara Pober, who runs a Williams Syndrome clinic at the Yale
University School of Medicine. “We can learn an awful lot about what
it means to have a handicap from folks with Williams Syndrome.”
And what it means to be shunned and isolated. Last year, Meghan
tried living in a college dorm. While she did make a few friends,
her mother, Liz Costello, says she had a rough time: “She doesn’t
fit in. She knows she doesn’t fit in. That’s very hard.”
Since that story first aired,
we’ve learned more about Williams Syndrome. Most people who have it
are not only using different parts of their brain when they listen
to music, they’re using more of it than the rest of us. And they are
more engaged emotionally.
Michael Williams is still most comfortable at the piano. 60
Minutes II caught up with him in September performing at a
retirement home in upstate New York.
We also went back to see some of our Williams friends when they got
together for one last time at that music camp in Massachusetts. Ben,
a very grown-up 17-year-old, plays the drums. Gloria has made two
CDs, and now sings in 30 languages. Jason is playing the drums and
working part-time at a video store.
And Meghan is living in California, and attends regular classes at a
local college, where she’s learned to ignore people who make fun of
her. “I’m not gonna be pushed or shoved or anything like that –
because nothing’s gonna pass me by. I’m a tough woman,” she says.
And, we met two new faces, both pianists and composers: Tori, 22,
and Alec, 18. Alec was barely two months old when his mother, Lori
Swaezey, sat him down next to her while she played a jazz piece on
the piano.
“When I came to a certain whole note in the piece, he matched the
note, and just sang, ‘Ooh.’ I looked at him and he smiled like crazy
and was kicking his legs,” recalls Swaezey. “I couldn’t believe it.
I knew there was some very spooky connection with music at that
point.”
While there’s no question that
those 20 missing genes can have a devastating effect on the lives of
people with Williams, it also seems to create an undeniable bond
among them.
“When I’m with, like, all of these people that are around me right
now, I feel like I fit in,” says Tori. “I feel safe. All these guys
have taught me not be negative and you know, I’m just happy.”
And they have remained positive through tremendous adversity. In
Ben’s short life, he’s already been through five major surgeries to
correct heart and spinal problems – problems that can be common for
people with Williams. His mother, Terry Monkaba, told Safer that
music got him through a very tough, young life.
“From when he was very small, music was the thing that calmed him
down. And music is what taught him to walk. He didn’t walk, he
marched to music when he was 4-and-a-half,” says Monkaba, who admits
it’s been difficult for them as a family. “Benjamin has a two-year
younger brother who has really been angry for many years because he
was cheated out of a regular brother. So it makes family life, you
know, very difficult.”
When we last met Dr. Pober, she was running a Williams Syndrome
clinic at Yale. In June, she left for further genetic study, but her
connection with Williams patients remains strong. Since our first
story, the human genome project has been completed. Geneticists now
know that most people with Williams are missing the same 20 genes.
And they think they know why they are so engaged by music.
“There was a very recent study that had individuals with Williams
Syndrome listen to music, and then had controlled individuals listen
to music and compared the areas of the brain that were activated,”
says Pober. “Folks with Williams Syndrome activated more brain areas
and not the same area that you or I would activate. So, it was an
overall greater activation … The underlying differences could
explain why persons with Williams Syndrome are so much more
connected to music. Seem to respond to music differently.”
The great tragedy of Williams,
however, is that they know they’re ill. “They’re smart enough to
know they’re different. And that is a great hardship for most
adolescents and adults,” says Pober.
In Meghan’s case, her mother says she’s accepted that she will never
have children, but still has great anxiety about being alone.
“She said to me a couple of years ago, ‘You know, mom, I just wanna
have someone that I can grow old with, too. And have somebody, you
know,’” says Liz Costello. “And so, she has a friend who has
Williams Syndrome who’s, she’s engaged to be married. And she said,
‘Part of me is so happy and the other part of me is so sad ‘cause I
don’t have anyone.’ But you know, who knows what the future’s gonna
bring? You know, who knows?”
Last summer, with her mother looking on, Meghan recorded a song for
her own CD. “I sometimes ask myself why are we going through this CD
thing, but boy, it’s magical. It’s just magical,” says Meghan’s
mother.
“She has a disability. She’s not a savant. There are many things she
can’t do, she won’t be able to do. But you know, she has something
that when she sings, people love to listen to her.”
MMIII, CBS Worldwide Inc. All Rights Reserved.
The following is an update of the above story. It aired as part of the Whiz Kids: Science, Music and Memory segment of 60 Minutes on February 6, 2005.
Correspondent Morley Safer
also talked to a group of musicians who are prodigies, too, in their
own unique way. They have a condition called Williams Syndrome, a
rare birth defect in which just 20 of the 35,000 genes in the brain
are missing. It’s enough to cause severe disability.
But the people that he met with Williams Syndrome seven years ago
are all thriving; because of a singular talent they developed as
children.
Gloria Lenhoff remembers more than 1,000 songs, yet she can’t add 5
plus 4. Michael Williams can play almost anything, yet he can’t go
out the door without getting lost. And Megan Finn studies music in
college, but can’t tell left from right.
Safer met these remarkable people at a music camp in Massachusetts.
They are people with profound disabilities, but with an equally
profound passion for music. They often have unusual, almost elfin
features. Their IQ's average in the 60s, but they have the social
skills of talk-show hosts -- what’s been called cocktail party
personalities.
To a stranger, however, any sense of their handicap quickly
disappears, and one is overwhelmed by their friendliness, their
openness.
How important is music? "Music is a huge part of my life," says
Finn. "To me, music is like soup. Music comes down to your throat
and feels so warm. So music is like soup. It tastes good."
Lenhoff can sing in 25 languages, including Macedonian, Korean,
Bulgarian, and Yiddish.
Among the things that seem to be common among people with Williams
Syndrome is extremely sensitive hearing. For instance, they can hear
whispering.
But they are among the happiest people you've ever met, and they are
always smiling.
Williams always knew he was different, but he only learned last year
that his condition had a name. At the music camp, he met other
people just like him for the first time. "Somehow, I felt that I fit
in," he says.
He is most comfortable at the piano, and composed the piece he was
playing. But as a child, his parents never dreamed he was capable of
handling the complexities of the instrument.
"My other kids had piano lessons. He didn’t. We didn’t think he
could do it," says Frank Williams, Michael's father. "After they
went out to play, he went down—plink, plank, plink, plank—for hours
on end, for days on end. And all of a sudden, one day he played a
song. 'What Now, My Love?' was his first song."
Frank Williams admits he was devastated when his son was born, and
he clearly wasn't normal. But that changed a long time ago. "We were
blessed," says Frank.
"The opportunity to study an individual with Williams Syndrome is
exciting. It provides a window on brain development," says Dr.
Barbara Pober, who runs a Williams Syndrome clinic at the Yale
University School of Medicine.
It's a pathway to understanding how perception works by
understanding the effect of those 20 missing genes.
"Surely their language skills must be a great aid to scientists
because you really can learn something from them about their
condition, no," asks Safer.
"Right. I mean, we can learn an awful lot about what it means to
have a handicap from folks with Williams Syndrome," says Pober.
They can also learn what it means to be shunned and isolated. Last
year, Finn tried living in a college dorm. While she did make a few
friends, her mother, Liz Costello, says Finn had a rough time.
"'Why don’t people call me? Why don’t my friends, who are nice to me
in classes, ask me to do something on the weekend,'" recalls
Costello. "She doesn’t fit in. She knows she doesn’t fit in. That’s
very hard."
Michael Williams and the others are still performing. And Sept. 7,
2004, was proclaimed "Mike Williams Day" in his hometown of South
Glens Falls, N.Y.