A Very Special Brain
Jan. 7, 2004
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 theyÃƒÂ¯Ã‚Â¿Ã‚Â½re doing.
But first, hereÃƒÂ¯Ã‚Â¿Ã‚Â½s a look back at 1997 in this 60 Minutes classic.
Gloria Lenhoff remembers more than 1,000 songs, yet she canÃƒÂ¯Ã‚Â¿Ã‚Â½t add 5 plus 4. Michael Williams can play almost anything, yet he canÃƒÂ¯Ã‚Â¿Ã‚Â½t go out the door without getting lost. Meghan Finn studies music in college but canÃƒÂ¯Ã‚Â¿Ã‚Â½t 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, whatÃƒÂ¯Ã‚Â¿Ã‚Â½s been called ÃƒÂ¯Ã‚Â¿Ã‚Â½cocktail party personalities.ÃƒÂ¯Ã‚Â¿Ã‚Â½
To a stranger, any sense of their handicap quickly disappears, and one is overwhelmed by their friendliness and openness.
ÃƒÂ¯Ã‚Â¿Ã‚Â½Music 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,ÃƒÂ¯Ã‚Â¿Ã‚Â½ says Meghan.
Gloria says she can sing in 25 languages: ÃƒÂ¯Ã‚Â¿Ã‚Â½I could sing in Macedonian, Korean, Yiddish, you name it.ÃƒÂ¯Ã‚Â¿Ã‚Â½
Among the things that seem to be common among people with Williams is extremely sensitive hearing. ItÃƒÂ¯Ã‚Â¿Ã‚Â½s 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: ÃƒÂ¯Ã‚Â¿Ã‚Â½Just shot off, right next to our house, and it made me cry so hard.ÃƒÂ¯Ã‚Â¿Ã‚Â½
For the most part, they are among the happiest people youÃƒÂ¯Ã‚Â¿Ã‚Â½ve probably ever met. And they canÃƒÂ¯Ã‚Â¿Ã‚Â½t stop smiling. But are they really happy most of the time?
ÃƒÂ¯Ã‚Â¿Ã‚Â½Yes, I am,ÃƒÂ¯Ã‚Â¿Ã‚Â½ says Bob. ÃƒÂ¯Ã‚Â¿Ã‚Â½I am, too,ÃƒÂ¯Ã‚Â¿Ã‚Â½ 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.
ÃƒÂ¯Ã‚Â¿Ã‚Â½Somehow, I felt that I fit in,ÃƒÂ¯Ã‚Â¿Ã‚Â½ 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.
ÃƒÂ¯Ã‚Â¿Ã‚Â½My other kids had piano lessons. He didnÃƒÂ¯Ã‚Â¿Ã‚Â½t, we didnÃƒÂ¯Ã‚Â¿Ã‚Â½t think he could do it. After they went out to play, he would sit down ÃƒÂ¯Ã‚Â¿Ã‚Â½ for hours on end, for days on end. And all of a sudden, one day he played a song,ÃƒÂ¯Ã‚Â¿Ã‚Â½ says Frank Williams, who admits he was devastated when his son was born and he clearly wasnÃƒÂ¯Ã‚Â¿Ã‚Â½t normal.
But that changed a long time ago. ÃƒÂ¯Ã‚Â¿Ã‚Â½We were blessed,ÃƒÂ¯Ã‚Â¿Ã‚Â½ says MichaelÃƒÂ¯Ã‚Â¿Ã‚Â½s father.
ÃƒÂ¯Ã‚Â¿Ã‚Â½The opportunity to study an individual with Williams Syndrome is exciting. It provides a window on brain development,ÃƒÂ¯Ã‚Â¿Ã‚Â½ says Dr. Barbara Pober, who runs a Williams Syndrome clinic at the Yale University School of Medicine. ÃƒÂ¯Ã‚Â¿Ã‚Â½We can learn an awful lot about what it means to have a handicap from folks with Williams Syndrome.ÃƒÂ¯Ã‚Â¿Ã‚Â½
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: ÃƒÂ¯Ã‚Â¿Ã‚Â½She doesnÃƒÂ¯Ã‚Â¿Ã‚Â½t fit in. She knows she doesnÃƒÂ¯Ã‚Â¿Ã‚Â½t fit in. ThatÃƒÂ¯Ã‚Â¿Ã‚Â½s very hard.ÃƒÂ¯Ã‚Â¿Ã‚Â½
Since that story first aired, weÃƒÂ¯Ã‚Â¿Ã‚Â½ve learned more about Williams Syndrome. Most people who have it are not only using different parts of their brain when they listen to music, theyÃƒÂ¯Ã‚Â¿Ã‚Â½re 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 sheÃƒÂ¯Ã‚Â¿Ã‚Â½s learned to ignore people who make fun of her. ÃƒÂ¯Ã‚Â¿Ã‚Â½IÃƒÂ¯Ã‚Â¿Ã‚Â½m not gonna be pushed or shoved or anything like that ÃƒÂ¯Ã‚Â¿Ã‚Â½ because nothingÃƒÂ¯Ã‚Â¿Ã‚Â½s gonna pass me by. IÃƒÂ¯Ã‚Â¿Ã‚Â½m a tough woman,ÃƒÂ¯Ã‚Â¿Ã‚Â½ 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.
ÃƒÂ¯Ã‚Â¿Ã‚Â½When I came to a certain whole note in the piece, he matched the note, and just sang, ÃƒÂ¯Ã‚Â¿Ã‚Â½Ooh.ÃƒÂ¯Ã‚Â¿Ã‚Â½ I looked at him and he smiled like crazy and was kicking his legs,ÃƒÂ¯Ã‚Â¿Ã‚Â½ recalls Swaezey. ÃƒÂ¯Ã‚Â¿Ã‚Â½I couldnÃƒÂ¯Ã‚Â¿Ã‚Â½t believe it. I knew there was some very spooky connection with music at that point.ÃƒÂ¯Ã‚Â¿Ã‚Â½
While thereÃƒÂ¯Ã‚Â¿Ã‚Â½s 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.
ÃƒÂ¯Ã‚Â¿Ã‚Â½When IÃƒÂ¯Ã‚Â¿Ã‚Â½m with, like, all of these people that are around me right now, I feel like I fit in,ÃƒÂ¯Ã‚Â¿Ã‚Â½ says Tori. ÃƒÂ¯Ã‚Â¿Ã‚Â½I feel safe. All these guys have taught me not be negative and you know, IÃƒÂ¯Ã‚Â¿Ã‚Â½m just happy.ÃƒÂ¯Ã‚Â¿Ã‚Â½
And they have remained positive through tremendous adversity. In BenÃƒÂ¯Ã‚Â¿Ã‚Â½s short life, heÃƒÂ¯Ã‚Â¿Ã‚Â½s already been through five major surgeries to correct heart and spinal problems ÃƒÂ¯Ã‚Â¿Ã‚Â½ 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.
ÃƒÂ¯Ã‚Â¿Ã‚Â½From when he was very small, music was the thing that calmed him down. And music is what taught him to walk. He didnÃƒÂ¯Ã‚Â¿Ã‚Â½t walk, he marched to music when he was 4-and-a-half,ÃƒÂ¯Ã‚Â¿Ã‚Â½ says Monkaba, who admits itÃƒÂ¯Ã‚Â¿Ã‚Â½s been difficult for them as a family. ÃƒÂ¯Ã‚Â¿Ã‚Â½Benjamin has a two-years 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.ÃƒÂ¯Ã‚Â¿Ã‚Â½
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.
ÃƒÂ¯Ã‚Â¿Ã‚Â½There 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,ÃƒÂ¯Ã‚Â¿Ã‚Â½ says Pober. ÃƒÂ¯Ã‚Â¿Ã‚Â½Folks 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 ÃƒÂ¯Ã‚Â¿Ã‚Â½ The underlying differences could explain why persons with Williams Syndrome are so much more connected to music. Seem to respond to music differently.ÃƒÂ¯Ã‚Â¿Ã‚Â½
The great tragedy of Williams, however, is that they know theyÃƒÂ¯Ã‚Â¿Ã‚Â½re ill. ÃƒÂ¯Ã‚Â¿Ã‚Â½TheyÃƒÂ¯Ã‚Â¿Ã‚Â½re smart enough to know theyÃƒÂ¯Ã‚Â¿Ã‚Â½re different. And that is a great hardship for most adolescents and adults,ÃƒÂ¯Ã‚Â¿Ã‚Â½ says Pober.
In MeghanÃƒÂ¯Ã‚Â¿Ã‚Â½s case, her mother says sheÃƒÂ¯Ã‚Â¿Ã‚Â½s accepted that she will never have children, but still has great anxiety about being alone.
ÃƒÂ¯Ã‚Â¿Ã‚Â½She said to me a couple of years ago, ÃƒÂ¯Ã‚Â¿Ã‚Â½You know, mom, I just wanna have someone that I can grow old with, too. And have somebody, you know,ÃƒÂ¯Ã‚Â¿Ã‚Â½ÃƒÂ¯Ã‚Â¿Ã‚Â½ says Liz Costello. ÃƒÂ¯Ã‚Â¿Ã‚Â½And so, she has a friend who has Williams Syndrome whoÃƒÂ¯Ã‚Â¿Ã‚Â½s, sheÃƒÂ¯Ã‚Â¿Ã‚Â½s engaged to be married. And she said, ÃƒÂ¯Ã‚Â¿Ã‚Â½Part of me is so happy and the other part of me is so sad ÃƒÂ¯Ã‚Â¿Ã‚Â½cause I donÃƒÂ¯Ã‚Â¿Ã‚Â½t have anyone.ÃƒÂ¯Ã‚Â¿Ã‚Â½ But you know, who knows what the futureÃƒÂ¯Ã‚Â¿Ã‚Â½s gonna bring? You know, who knows?ÃƒÂ¯Ã‚Â¿Ã‚Â½
Last summer, with her mother looking on, Meghan recorded a song for her own CD. ÃƒÂ¯Ã‚Â¿Ã‚Â½I sometimes ask myself why are we going through this CD thing, but boy, itÃƒÂ¯Ã‚Â¿Ã‚Â½s magical. ItÃƒÂ¯Ã‚Â¿Ã‚Â½s just magical,ÃƒÂ¯Ã‚Â¿Ã‚Â½ says MeghanÃƒÂ¯Ã‚Â¿Ã‚Â½s mother.
ÃƒÂ¯Ã‚Â¿Ã‚Â½She has a disability. SheÃƒÂ¯Ã‚Â¿Ã‚Â½s not a savant. There are many things she canÃƒÂ¯Ã‚Â¿Ã‚Â½t do, she wonÃƒÂ¯Ã‚Â¿Ã‚Â½t be able to do. But you know, she has something that when she sings, people love to listen to her.ÃƒÂ¯Ã‚Â¿Ã‚Â½
A Very Special Brain