The table was set for Thanksgiving and all the family was there. Joey, the baby, was the center of attention. This would be the second Thanksgiving he had witnessed in his relatively short life. Somebody remarked that he looked thin, but Sandra, Joey's mother, thought that it was just a sign of growth. As the turkey and mashed potatoes were served, the family turned its attention away from the cooing baby to ladling piles of food onto plates. Joey didn't eat much that night, but kept asking for more to drink.
Joey's health got worse over the following days-he was vomiting and looked pale. On the following Monday he slept in late. Sandra didn't want to wake him. When she entered Joey's room late in the morning, she found her son in a state of shock. He was almost blue, his lips drawn back in a grimace, his breath shallow. She rushed him to the hospital where it took about half an hour for the nurses to figure out that Joey had diabetes and was suffering from hyperglycemia. Joey was lucky enough to recover, but not before his and his parents' lives were changed forever.
"It was like a new baby was born," Sandra Silvestri says. "I had a new baby, a baby with diabetes.
The Silvestri's story is not unusual. Sandra did what every other terrified mother of a child with diabetes does-she panicked and tried to consume every piece of information available about diabetes. Unfortunately, the more she read, the more terrified she became. She found all the information overwhelming. "I put my head down and tried to survive," she says. With every new complication discovered, she became angrier, until she was mad at the entire diabetes community, resentful of anything related to diabetes.
Silvestri's anger lasted until she learned to channel it into something productive. She is now using her knowledge to produce a television documentary about diabetes called "Time Bomb." The documentary focuses on the sobering complications of diabetes and the need for a cure.
When she speaks about the documentary, a hint of anger swells in her voice. She thinks the media spends too much effort attempting to make people with diabetes appear "normal." According to Silvestri, the only way the public will take the disease seriously is by showing its debilitating complications.
"Anyone who says you can have diabetes and lead a normal life is letting everybody off the hook and robbing Joey of a future. The technology we have now is not good enough. I don't want Joey to live a life with diabetes; I want to find a cure. Diabetes only takes from people's lives and I hate it," Silvestri says.
To show how serious diabetes can be, Silvestri joined Pam Fernandes to speak in front of members of congress at a Diabetes Summit in May of '96. The Summit drew members from all walks of the diabetes community to speak in front of congressmen and women, legislative aides, community leaders and the media. Fernandes was diagnosed with diabetes when she was four years old. She was declared legally blind at 21. She has now had 30 operations, with a kidney transplant in 1987. She was chosen to represent the 16 million people with diabetes to show the physical toll diabetes can inflict on a body.
Fernandes told the audience that unlike other people with disabilities, she was born healthy and in a matter of 20 years, diabetes changed her life. She says it's difficult to have to continue making adjustments to her life-to lose her sight, to become infertile. Losing these capabilities has made Fernandes question what she still can do, and the answers she has received from the public have fueled her advocacy campaign.
"People tell me I shouldn't have to work, that I should stay home and rest. They want to cut my steak for me. The public has low expectations for people with any kind of disability. We all must raise our expectations of what can be done and we have to stretch to reach those expectations," says Fernandes.
Many patient advocates for diabetes believe that diabetes has become a disease too profitable to cure. Diabetes maintenance has created an industry predicted to surpass $5 billion by the year 2001. David Groves, who leads the chatline Diabetes Forum through CompuServe, and has had type I diabetes for 43 years, believes that the business community intentionally focuses on the maintenance rather than a cure for diabetes.
"Diabetes Forecast comes out and says, 'Little Johnny has diabetes, but don't worry, he's going to be all right.' It's just not true. Little Johnny is going to die of diabetes," says Groves.
Diabetes Health board member Joan Hoover shares Grove's cynicism, though her anger over time has mellowed. When her daughter was diagnosed with diabetes 30 years ago, Hoover began a fund-raising campaign to find a cure. She found her greatest success when she went to Las Vegas and convinced Wayne Newton to donate the proceeds from five of his shows towards diabetes research. The benefits raised $500,000.
But after years of fund-raising, Hoover has become frustrated. Every year scientists would say that a cure for diabetes could be found with more money. But Hoover never knew where the money went after she handed it over. A cure has yet to be found, and Hoover doesn't know if scientists are any closer to finding a cure than they were when she began. Yet articles about people with diabetes continue to emphasize the success stories without showing the darker complications of the disease.
"People always complain to me that they can't possibly match the lives of those shown in Diabetes Forecast," says Hoover. "The reality is that many people's lives are much tougher, and those people aren't highlighted by the media."
In the past the ADA and Forecast have been somewhat hesitant to portray the darker side of diabetes, concedes Jerry Franz, vice president of communications for the ADA. But that has changed, Franz says, and the ADA's policy has shifted to one of exposing the seriousness of the disease.
But there are other problems. Hoover and Groves point to the historic DCCT study as a prime example of how funding for diabetes research has been misappropriated. The study was the largest in diabetes history, taking ten years and using $250 to $300 million. Instead of finding a cure, "tight control of blood sugars" was the DCCT's answer to diabetes. Groves calls the study a deliberate exercise to avoid spending money on research for a cure.
Yachmiel Altman, a software designer for Information Builders in New York, says that when the DCCT results came out, he and the people he knew with diabetes considered it a joke. "We thought it was hysterical. They spent $250 million to say that people had to control their blood sugars? I had been doing that since I was six years old," says Altman.
How Do I Present Myself to the Watching World?
Gary Kleiman, executive director of medical development for the Diabetes Research Institute at the University of Miami, divides the ways people cope with diabetes into two categories: those who look at their lives positively, but shield themselves from the grim implications of diabetes, and those who view their lives negatively, but perhaps more honestly.
"I think most people would rather keep their heads in the sand," says Kleiman, who has lived with diabetes for 36 years. "Who wouldn't? What person, with or without diabetes, is ready to contemplate their own death? It's too heavy. People would rather look at the bright side and work to make their lives as productive as they can."
Kleiman says that once people have learned to accept the fact that they have diabetes, the natural reaction is to resign themselves and make the best of it. They don't want to deal with feeling different. People with diabetes often overcompensate to make sure that they are just as good as anybody else.
"A person with diabetes, like anybody else, wants to promote his or her positive qualities. If diabetes is considered a defect then a person with diabetes will naturally downplay that defect," says Kleiman.
Unfortunately, until a cure is found, diabetes will remain a part of a person's life. Whether people choose to wallow in their own misery or ignore the problem entirely, diabetes does not go away. Diabetes Health board member William Polonsky, PhD, CDE, makes the point that a person can complain all his life about diabetes without making the disease any easier to live with.
"Diabetes is like an unwanted guest who won't move out. You can complain to every person you know about what a crummy roommate you have, or you can do something about it," says Polonsky. "You can get perspective, you can find humor, and you can find an adequate way of compromising."
Groves looks at this "make the best of it" approach as a waste of time. He says that anyone who makes any claims that diabetes changed his life for the better, or even anyone who claims to have led a normal life with diabetes, is fooling himself.
"I've climbed the Great Wall of China. I've seen priceless Faberg_ eggs in Russia. I've done a lot of things in my life no one even dreams about, but I could have done them a hell of a lot better without diabetes," says Groves.
Exemplar or Victim?
Fundraising groups must walk a fine line when presenting the diabetes community to the public. As Hoover says, she can go to a company such as General Motors and describe diabetes as a terrible disease with ghastly complications, and ask for money to find a cure. Then she may go back the next day to General Motors and present the person with diabetes as dependable as well as productive, and ask General Motors to give the person with diabetes a job.
According to Hoover, the only mistake a person can make is to attempt a common voice for the diabetes community. No single image of the diabetic exists. The only way to view the community is person by person.
"Diabetes is a democratic disease. For every one of the 16 million, you'll find another image, another story," says Hoover.
Tell Me a Happy Story
Silvestri and Hoover sit together in the pressroom, taking a break from a long morning at the 56th Annual Scientific Sessions in San Francisco. The lights are bright, the ceiling high, suggesting endless possibility. While the convention roars on outside the door with all the razz and glitter of a carnival, the women speak to each other quietly.
"Can you imagine what would happen to all those people out there if somebody suddenly found a cure for diabetes?" Hoover asks with a sly smile. "They would all be out of business."
The women have something in common. Both are fighting for their children against a disease they don't have. Silvestri has been at it for four years now while Hoover has been campaigning for 30. Silvestri's son, Joey, is now six-years-old, a healthy kid in every way except that he has diabetes. Silvestri is not fighting to end Joey's six shots of insulin a day. She is fighting against the ghost of "what could be": the blindness, the amputations, and the kidney disease her son might have to face.
"This is not my disease," says Silvestri. "These are not my issues. But somebody has to be brave."
When Hoover talks about her daughter's case, she does not refer to "what could be." She acknowledges what she has seen-the complications touching her own life. When she recites the list of her daughter's complications, the 20 surgeries, the two kidney transplants and the blindness, the angry blood subsides from Silvestri's face. The edge in her voice catches and quiets to a whisper, until all that is left are tears.
Hoover holds Silvestri's hand. She wonders, as she's wondered before, if she has spoken too freely about her daughter. Her daughter's story, with its long list of complications, does not happen to everyone. Though she wants to speak honestly about diabetes, she worries about presenting a laundry list of possible things which may go wrong.
Hoover now has a granddaughter who has had diabetes for three years and a daughter who has had it for 30. Hoover has begun the cycle for the second time. She says that people think because she has raised a daughter with diabetes, she can tell them how to make life easier.
"They want to hear a success story," she says, "but it's a story I'm not sure how to tell."