Staying Positive During Devastating Challenges

Staying Positive In The Face
Of Life’s Most Devastating Challenges
Attorney With Rare Genetic Disorder
Hopes To Inspire Others

Cary M. Berman arrived in the world 52 years ago already saddled with a rare neurological disease, though neither he nor his parents knew.

He was well into adulthood before it was confirmed that he suffered from Late-Onset Tay-Sachs (LOTS), a genetic disorder that leads to damaged cells and a steady deterioration of muscle control. He was 1 of 250 in the world when diagnosed with LOTS, and it explained lots of medical challenges that he encountered in his life.

Usually, symptoms start with clumsiness and weakened leg muscles. Over time, there is more loss of mobility, which can lead to the need for a cane or wheelchair. Speaking and swallowing difficulties also can emerge. There are also psychiatric consequences in 50 percent of the patients with LOTS.

“Basically, my medical challenge has brought imbalance and chaos to every aspect of my life,” says Berman, who tells his story in “Genesis: Born with Tay-Sachs” (www.livingwithtaysachs.com). “My challenge has been to bring balance back into my life.”

Like many who suffer from Tay-Sachs, Berman concentrates on strategies for managing life with the disease because a cure does not exist, though research is ongoing.

Tay-Sachs is caused by a missing enzyme, hexosamindase A. Three forms of the disease exist, according to the National Tay-Sachs and Allied Diseases Association. They are classic infantile, a fatal version where babies show symptoms at about six months; juvenile, which most often appears between ages 2 and 5; and late-onset, the version Berman has, where the symptoms usually appear in late adolescence or early adulthood, though can appear later.

French Canadians, Louisiana Cajuns and people of East European Jewish descent are considered high risk. Berman is Jewish.

Berman says he has been able to do battle with his medical condition with the help of his family, friends and faith. His stubbornness also doesn’t hurt.

“When someone tells me I can’t do something, I want to do it,” says Berman, who worked as an assistant public defender in Illinois for 27 years before his disease sidelined him.

He hopes that by sharing his experience, he can inspire others who face difficulties.

 “Everyone in life has at least one challenge to address,” Berman says. “It might have to do with health, finances, family or something else. But I think there are some common approaches that apply for overcoming adversity of any type.”

He offers these suggestions:

• Take control. This is no time to accept defeat. “I believe in taking active control of your life rather than approaching challenges in a passive fashion,” Berman says. “Don’t just sit back and let things happen to you. Yes, the challenge you face may be extremely difficult, but you need to be a catalyst in your own life, making the bad situation better.”

• Maintain a good mental attitude. Perhaps nothing is more important in dealing with challenges than mental attitude, Berman says. To nourish a positive attitude, he often pushes himself to attempt things outside his comfort zone, such as when he learned to rock climb in Thailand. “I realize not everyone will do something that that extreme,” he says. “But the key point to remember that it’s not about the activity, it’s about your attitude. Anything you can do that helps you keep a positive attitude is the right activity.”

• Embrace friends and family.  Having a support network makes all the difference, because everyone needs others to lean on in times of trouble, Berman says. “Without a doubt, the most powerful and important relationship I have is with my wife, Carmen,” he says. “She is my best friend and most trusted confidant.”

But friends can come in all sizes, races, genders and backgrounds, and his certainly do, he says. “The great thing we do is listen to each other, which is the way you have a meaningful conversation,” Berman says.

“Listening isn’t the same thing as agreement. We sometimes disagree, but we maintain our respect.”

“To me, the most successful person is not the one with the most money or the most prestigious career,” Berman says. “The most successful person is the one who can deal with adversity effectively.”

About Cary M. Berman

Cary M. Berman was born with a rare disease and tells his story in “Genesis: Born with Tay-Sachs” (www.livingwithtaysachs.com). He received a law degree from the John Marshall Law School in 1988. He worked as an assistant public defender in Cook County, Ill., for 27 years, and won an appeal in a murder case with is first assignment. On the personal side, he is married, earned a black belt in taekwondo at an early age and learned to rock climb in Thailand, taught by a cousin who is one of the top climbers in the world.

Understanding Human Behavior by Studying Animals

What Can Animals Teach Us
About Kindness And Empathy?
Studies Of Our Non-Human Friends May Show
How Genes Inspire Our Better Tendencies

While humans are capable of acts of cruelty, greed and deception, they also possess plenty of positive characteristics such as kindness, compassion, friendliness and empathy.

But why? Are those better angels of our nature something nurtured in us by our parents, or do we arrive on the planet genetically predisposed for them?

It’s something scientists have puzzled over, and many of them may be finding answers not with human research but by concentrating on animals.

“The idea that we could learn about kindness or compassion by studying animals might seem strange,” says Peter Schattner, a scientist and author of the book “Sex, Love and DNA: What Molecular Biology Teaches Us About Being Human” (www.peterschattner.com). 

“But since similar genes are often found in animals and people, what we learn from animals may well be relevant to understanding human behavior as well.”
Dogs are especially good species to study to learn about kindness, devotion and other pro-social traits because they have been genetically bred to display those traits, Schattner says.

“Look at it this way,” he says. “Dogs are the result of an extended genetic ‘experiment’ carried out by humans to artificially select the very personality traits that we value in them.”

Another reason geneticists like to study dogs is that, as species go, they are relatively young.

“Most scientists estimate people began breeding wolves for gentleness and tameness 15,000 to 30,000 years ago,” Schattner says. “Compare that to humans. We are believed to have diverged from chimpanzees, our closest living evolutionary relatives, about 4 million to 9 million years ago.”

The time span is important because fewer DNA changes between dogs and wolves have had time to develop. That makes it easier – though not necessarily simple – to track genetic changes to determine what genes affect behaviors, Schattner says.

Dogs aren’t the only animals scientists study that could help unlock clues about human traits and their genetic origins, Schattner says. Other examples include:

•  Mice and friendliness. Scientists studying the biological origins of Williams Beuren syndrome are making progress with mice. The syndrome is a medical condition that has several traits, but one of the most striking is that people with this syndrome are unusually friendly, even toward strangers. Scientists can engineer mice to have a similar chromosomal makeup as people with Williams Beuren syndrome. One result of this research so far is that, at least in mice, the friendliness associated with the syndrome appears to be linked to a single gene.

•  Siberian silver foxes, gentleness and friendliness. Research on Siberian silver foxes began in what was then the Soviet Union in the 1950s in an area where local farmers raised the foxes for their fur. A Soviet geneticist began trying to breed a tamer fox that was easier for the farmers to handle. He did this by mating the tamest males with the tamest females. Within four generations – and a silver fox generation is only about three to four years – the animals were showing signs of domestication. Over time, the researchers showed that gentleness and friendliness were genetic. “One result of all this is the foxes became so tame and adorable that allowing them to be killed for fur became difficult for the scientists,” Schattner says. “They began selling them as pets.”

•  Rats and empathy. Perhaps one of the more surprising experiments involved rats. University of Chicago researchers placed two rats in a large cage. One rat was free to wander, but the other was trapped in a smaller cage within the cage. The trapped rat would cry out in alarm and, remarkably, the free rat would try to open the other rat’s cage, which was no easy task. Even with no reward, three-fourths of the free rats in the experiment chose to open the trapped rat’s cage. “The results of these experiments were disturbing to people who believe that only we humans are capable of empathy and compassion,” Schattner says. Some scientists were still skeptical, saying the rats’ may have been pro-social, but didn’t necessarily demonstrate empathy or compassion.

About Peter Schattner

Peter Schattner (www.peterschattner.com) is a scientist, educator and writer with 30 years of research experience in molecular biology, genetics, biomedical instrumentation and physics. He is a recipient of the Technical Innovation Award from the American Institute of Ultrasound in Medicine. Schattner received his doctorate degree from the Massachusetts Institute of Technology under Nobel Laureate Steven Weinberg and has held research and teaching positions at the University of California, California State University and Stanford Research Institute. He is the author of numerous scientific articles and reviews, as well as the textbook “Genomes, Browsers and Databases.” His latest book, “Sex, Love and DNA: What Molecular Biology Teaches Us About Being Human,” is his first book for non-scientists.