Personal Stakes
BY VICTORIA STUART

 

I

n ancient African mythology there is a figure who has one leg shorter than the other, so that he can stand with one foot in heaven and one foot on Earth. “This may be the best metaphor for the meaning of my life,” says D. Marvin Jones, professor of law.

While bridging the gap between academic research and reality is a constant challenge for University of Miami faculty, for Jones and other professors like him, the struggle has a direct impact on their lives. • In the School of Medicine, associate professor Norma Kenyon searches for a cure for diabetes: Her seven-year-old daughter suffers from the most vicious form of the disease.

In the School of Education, associate professor Elizabeth Harry works to educate teachers and families about children with special needs: Her own special-needs daughter died at the age of six.

In the Department of Psychology, research assistant professor Kristin Kilbourn is conducting research on the connection between behavior and biology: Her mother died from cancer when Kilbourn was only 18, and she is convinced that nontraditional treatments could have prolonged her mother’s life..

And in the School of Law, Jones teaches constitutional law: He grew up during a time when “colored people” were denied the basic American guarantee that “all men are created equal.”

"Our research is much more than a matter of intellectual curiosity for us. It's a part of our life's mission," explains Kenyon, who is associate director for research and program development, and director of preclinical research at the School of Medicine's Diabetes Research Institute (DRI). "We're fortunate that it's also part of the University's mission. The University of Miami is on the leading edge of research in many fields, but more importantly, it is also a pioneer in translating that research into effective tools for change."

Dr. Kenyon photoFor Kenyon, Kilbourn, Harry, and Jones, that emphasis on "translational research" has a very personal impact.

In Kenyon's case, it provides the imperative for her research into a cure for diabetes. "There are many organizations and institutions in this country that are working on preventing diabetes, but there is relatively little being done to help the people who already have it," she says.

Kenyon, the daughter of Norman Kenyon (M.D. '56)--the president of the first graduating class of the University of Miami School of Medicine and a voluntary professor of surgery at the school, had always been interested in diabetes research and had earned her Ph.D. in immunology. She completed her second postdoctoral fellowship at the University's Diabetes Research Institute, then was hired by the former Coulter Corporation, now Beckman Coulter, Inc.

"But after working in a corporate environment for several years, I had a strong desire to return to teaching and research," Kenyon explains, "so I accepted a position at Duke University."

During a short trip there to begin setting up a laboratory, she called home to check on her children before boarding a plane to Miami and was informed that her 14-month-old daughter was in the hospital. She had developed dramatic-onset Type I diabetes, the most vicious form of the disease. She was bleeding from several organ systems and unable to breathe on her own. She remained on a respirator for five days.

"I did not expect to see her alive again," says Kenyon, who slept in a chair by her daughter's crib in the hospital throughout her child's ordeal.

After a long struggle, her daughter recovered, but was so physically devastated that she had to relearn how to speak and walk. "The baby I knew was gone, and we had to start everything all over again," Kenyon says. "Today, she is a pretty normal seven-year-old, with one exception: She still has Type I diabetes. I am, literally, her pancreas. Without the proper care and medication, she could die in less than 24 hours. That's how devastating this disease can be. Until it happens to you, you don't understand how difficult it can be to live with, so that has made me more sensitive to how I view diabetes and the impact it can have on the lives of patients and their families."

Following her daughter's initial illness, Kenyon left Duke to return to the University of Miami's DRI to pursue research into islet cell transplantation, the best hope for a cure.

"The DRI is renowned nationwide for setting the standard on this type of research," Kenyon explains. "I came back here knowing the strength of the institute and hoping to play a vital role in developing a cure."

Her research has most recently resulted in effective islet cell transplantation in monkeys, who have the closest immune system to humans.

Kenyon is also active in educating patients with diabetes as well as their families. She frequently speaks to groups throughout the community and has worked with the institute's foundation to initiate an awareness campaign with the theme of "Don't Abandon this Generation."

"Being a walking statistic has given me a unique perspective on my research," Kenyon says. "I look at things as both a scientist and a parent. When a treatment method is developed, and there are side effects or complications, I think, 'How would those side effects affect my daughter and others like her?' For example, an acceptable toxicity level to a scientist is very different from an acceptable toxicity level to a parent.

"I'm grateful that my daughter is alive and to know that there's hope," Kenyon continues. "Dr. [Camillo] Ricordi (scientific director of the DRI) is always telling us, 'Don't hope; just do it.'"


or Elizabeth Harry, that kind of practical attitude resulted from desperation and a true pioneering spirit. Harry was teaching education classes at the University of the West Indies in Trinidad when her first child, Melanie, was born. "Within a month after her birth we realized that Melanie had cerebral palsy, a type that left her intelligence intact but caused great physical difficulties," she explains.

Harry was forced to resign from her teaching position to care for her child full-time. She eventually opened her own school and daycare center for special-needs children in Trinidad.

Professor Harry photo"At that time, there was no support system for children with disabilities in Trinidad, so when Melanie was three years old, I went to Canada and earned a diploma in special education," she says.

Harry then returned to Trinidad and founded The Immortelle Center, named after a tree that grows wild in the forests of Trinidad. "The staple crop of Trinidad is the cocoa plant, which grows in the shade of the Immortelle tree. Immortelle is French for 'everlasting,'" she explains. "My idea was that this school would provide enough shade for these fragile children who couldn't grow up in the direct sunlight."

The center served more than 40 children and continues to operate today--as a nonprofit corporation operated by the students' parents. Harry turned the center over to them three years after her daughter's death at the age of six. Harry then left Trinidad for Syracuse University, where she earned a Ph.D. in special education.

"After that experience, helping families understand and help loved ones with disabilities became my driving focus," says Harry, who joined the University of Miami in 1995. A faculty member in the Department of Teaching and Learning at the School of Education, Harry focuses her research on the experiences of families from ethnic and minority groups. She has completed several studies and two books about the effects of culture and special education.

Surprisingly, Harry never planned to become a teacher. "In college, I loved English literature, but I thought I was too practical a person to stay in the ivory tower," she explained. "But when I began teaching in the field of learning disabilities, it was altogether different. I was driven by need. There was no help to be found, so I had to help myself. I found that I had developed a passion for the work. The greatest reward I got out of it was being able to provide resources for the families. I knew what it felt like to be the parent of a child whom nobody was prepared to help.

"I still carry that with me today. That's my driving force," says Harry, who tells Melanie's story to every class of students she teaches. "I feel that Melanie brought me a new perspective on life. When you have an experience that forces you to come to terms with living and dying, your whole perspective changes. My experience with Melanie forced me to make a contribution to the community, and that contribution is ongoing even today."

K
ristin Kilbourn (Ph.D. '96) is another practical pioneer. In college, she was questioned about wanting to combine her studies of biology and psychology. "Back then, people laughed when I told them what I was studying, but I was determined to find the connection between the body and the mind that would help improve the quality of people's lives," says Kilbourn, today a researcher in the relatively new field of psychoneuroimmunology.

Professor Kilbourne photo"Psychoneuroimmunology looks at the mind-body connection to see how they affect each other," says Kilbourn, who also is conducting research through the University's Center for Psycho-Oncology Research, one of only five such centers in the country and part of a multimillion-dollar project funded by the National Cancer Institute.

"When I was 14, my mother was diagnosed with cancer. She died four years later," Kilbourn recalls. "But when she reached the later stages of her disease, she was able to undergo some of the precursors of what we today call alternative medicine--hypnotherapy, psychotherapy, etc.--and I could see that it really helped her. To this day, I believe that if she had been able to have that kind of treatment earlier on, it might have saved her life or at least improved the quality and/or length of her life."

Since her mother's death, Kilbourn has been on a mission to discover the connection between the mind and the body. She and fellow researchers Neil Schneiderman and Michael Antoni have been able to show examples of this connection. They have worked successfully with HIV-infected patients, helping them to maintain their immune status over time, using stress management interventions. They have identified a number of psychological factors that positively influence the body's immune system. They are beginning a similar study on female cancer patients.

"When my mother was ill and dying, I felt like I didn't have any control over what happened, and I never wanted to feel that way again," Kilbourn explains. "Whenever I talk to families who are in a similar circumstance, I try to help them so that they won't have to go through what I went through. That way, my mom didn't die in vain."

Kilbourn emphasizes that none of her work would have been possible anywhere else but at the University of Miami. "We have an extraordinary team of faculty researchers here who are truly pioneers in some novel areas within the field," she says, "and the University of Miami is one of the few places where interdisciplinary research is encouraged and faculty from all fields collaborate. I've been lucky to have had the opportunity to work with this team, and now that we will begin working with women who have breast cancer, I feel that I've come full circle."

F
or Donald Jones, "full circle" ismore like a windmill. "I feel like Don Quixote, jousting at invisible giants," says Jones, who has spent his life fighting racial inequality and social injustice. "In fact, one of my first published articles was titled 'Unrightable Wrongs' and described the way the law doesn't always provide a remedy for things society knows are morally wrong."

Jones grew up in East Baltimore during the 1950s, an era in which overt segregation was still practiced. "We were called 'Negroes' then, and we lived behind a wall, not a physical wall, but a wall of deeply understood limitations on what one could aspire to, what work one could get, what constituted achievement," he explains.

"Behind that wall my mother and father, my cousins and uncles worked as janitors and stevedores, maids and hairdressers, garbagemen and steelworkers. We made the beds, washed the floors, cut the grass, and cooked the food in restaurants and hotels we could not be served in."

Those experiences touched Jones deeply and ingrained in him a sense of wanting to make things right. "Not to put too fine a point on it, but I wanted to change the world," he says. "I wanted to make a dent in the mountain of injustice. In college, one of my professors told me that law is a powerful instrument of social change, so I decided to become a lawyer."

He graduated from Union College in only three-and-a-half years, working two part-time jobs: as a local newspaper editor and a taxi driver. "It wasn't easy for me, but I survived it," says Jones, who then earned a law degree from New York University and went on to teach at Antioch School of Law in Washington, D.C., one of the most liberal law schools in the country. "Their mission was to follow the star of social reform, and that further focused my determination," he explains.

Jones next went into private practice, trying civil rights cases. He later became an accomplished trial lawyer for the Equal Employment Opportunity Commission (EEOC). "I was very successful with the EEOC, but I felt that it didn't fit with my abilities or desires; I wanted to teach," he recalls.

And so, Jones joined the faculty of the University of Miami School of Law in 1988. He is one of the most popular professors at the school and spends most of his spare time involved in community and government organizations working toward improving racial equality.

"I don't talk about my personal experiences in class, but I draw upon them to help my students learn to think about things more deeply," he says. "When I was in law school, I was taught that there was only one view of the law, but I try to show my students that there are many ways to view the law. To me, that's what legal education is all about. Once they know about these different views out there, they can make their own decisions-but at least they know."

Jones adds, "Martin Luther King once said, 'How long will it be [until we are free]?' and then he said, 'Not long.' But, how long is 'not long'? Instead, I'd like to ask, 'How far have we come?'"

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Victoria Stuart is a frequent contributor to Miami magazine. Photography by Donna Victor.
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