Kindred Spirit

Stephen Derrig was at Walt Disney World with his wife, Melissa, and their two children, Alec and Megan, when he started to feel sick. Within a week he was hospitalized back home in Akron, Ohio, on the verge of death. At first he was told he had asthma. Then pleurisy, a serious lung disease. Large doses of various medications to combat these ailments helped him temporarily, but Stephen's health was still failing. One physician finally tested him for HIV antibodies, and the results verified he was seropositive. Further tests showed that his HIV disease had progressed to AIDS. Melissa and the children, however, were seronegative. 'It was kind of a relief,' he says of finally being diagnosed. At least, he says, he now knew how to treat what was making him ill. Nearly overnight the Derrigs became the portrait of how suburban American families are becoming affected by a disease once thought by a large portion of their neighbors to affect only minorities and drug users. Stephen, an Akron firefighter, believes he was exposed to HIV on the job working as a medic. Instead of retreating into the shadows and keeping quiet about what they were dealing with, though, the family used the media to their advantage to try to end ignorance about AIDS. But not at first. Coming to Terms The Derrigs' story first surfaced in the Akron Beacon Journal in an article by reporter Julie Wallace. She discovered the family's situation while covering a story on another Akron firefighter, who had cancer and was trying to get workers' compensation. The firefighter said he got sick after breathing in cancer-causing toxins on the job, but the city kept appealing his claim and denying benefits. While doing research on her story, Wallace stumbled onto Stephen's case; he had been encountering the same problem with being denied workers' compensation by the city of Akron. When Wallace published her first article, she mentioned Derrig, without using his name, as having a similar situation. After her series of articles was published, the city decided to grant the benefits. While the outcome of the financial battle with the city was a relief, Melissa was fearful that information about her husband's health problems might become public and cause problems for her family. 'There were a lot of connections' in the newspaper, she says, referring to the first article that mentioned him as a 'firefighter with an infectious disease.' After Wallace first contacted the Derrigs, she kept in touch with them for six months until they were comfortable enough to talk about their story on the record. The turning point was when a few people tried to stop Stephen from coaching his son's baseball team. He says he realized then that he had to take action. 'One guy said that I had AIDS and that he wouldn't let me coach his kid,' Stephen says. 'People followed his move after he said that. They thought I could infect a kid by coaching. If I thought I was at any risk to those kids, I wouldn't coach!' Despite the opposition to his coaching by a few people in their community, Stephen says the majority of parents were supportive. That helped him out in his decision to be proactive'and use the media to his advantage. When the first article appeared in the Akron Beacon Journal, Stephen says, he knew it was a big story. He remembers how it played out: 'I said to Melissa, 'Are you ready to go to New York?''' The next day they boarded a plane to appear on the Today show. Stephen, a fan of Katie Couric's, says it was one of the best moments of his life. Melissa recalls that on the plane back to Ohio, she overheard two men talking in the seat behind her. One of them was talking about his father, who had died when the man was young. He was discussing the only memory he had of his father: when he coached his baseball team. Melissa says she then knew that Stephen had to coach'he had to be there for his kids. When they returned home, there were about 20 messages on the answering machine from various media outlets. 'They were like vultures,' Stephen says. 'They were circling the neighborhood.' Melissa also remembers one of her friends calling with a bit of good-natured teasing about all the media coverage. 'She said, 'Do you realize you're on the front page of the paper four out of five days and you haven't even killed anyone?''' Melissa says, laughing. The media flurry died down eventually, after the coaching controversy passed over. The family had become local celebrities'and Stephen was coaching again. The family's plan had worked. The media helped not only to get his workers' compensation benefits approved but also to get his coaching position back. But Stephen is not one to hold a grudge; he still interacts with the people who once told him he could not coach. 'For them, it's almost like it's over now and in the past,' he says. 'Do they feel that they are still right? I'm not really sure.' Family Matters Stephen is sitting on the downstairs sofa when he hears Melissa grumble. Her guttural moan of disappointment gets louder as she walks down the steps. 'Megan got a demerit for not doing her health homework,' she says, shaking her head and holding up a piece of paper that her daughter gave to her. Alec, the 8-year-old son, emerges from upstairs behind his mom, grinning from ear to ear. Megan is next to Alec and starts laughing. 'April Fool's!' she exclaims. Melissa looks surprised. 'I wondered why you were smiling so much,' she says, looking at Alec. He starts jumping around, excited at Megan's trickery. He takes a ball off the floor and tosses it into the air. He finally settles down and nestles onto Stephen's lap. Megan and Alec know about their father's disease. It was never a secret to them. 'I couldn't care less what anyone thinks,' Melissa says. 'My only concern was [attitudes toward] the kids as far as what people think.' But that never posed a problem. The principal of the children's school had the health teacher address AIDS in their classes. And none of the other kids ever said anything hurtful or discriminatory to either Alec or Megan. Megan giggles, still thrilled with her joke and her work on the authentic-looking demerit. She tells her dad about the mayor visiting her class that day. He had asked them if he knew any of their parents. Megan says she raised her hand and asked if he knew Stephen Derrig. 'He definitely knows me,' Stephen laughs, referring to his problems with getting workers' compensation. 'You know the mayor?' Alec asks excitedly. 'He said to tell you hi,' Megan says, grinning. 'He was biting his lip the whole time.' 'I'm sure he was,' Stephen says. 'I'm sure he was.' How? Why? When? On the wall in the family's TV room there is a yellow firefighter helmet covered with the signatures of every firefighter in the department. This is the helmet Stephen wore during his tenure at the fire department. Shortly after he was diagnosed, he retired from his job. He knows he could have contracted HIV when he delivered a crack baby on the side of the road and the mother's amniotic fluid blew up in his face. It could have happened while helping the victim of one of countless stabbings and violent crimes. Every day Stephen came in contact with what he calls 'large volumes of blood.' Even though the job was risky, Stephen says he never has regretted his choice to be a firefighter. He says he never asked questions like, Why my family? 'Instead, we wondered, How?' Melissa adds. She says it is a common misconception that wearing gloves will completely prevent contracting an infectious disease on the job. People do not realize all the crazy things that firefighters see every day, she says. Stephen would have to get out of bed every evening to answer emergency calls, sometimes as many as six times in one night. 'I think people don't really know what they do,' she says. 'Most people only think of the fire aspect.' Day by Day Today Stephen is painting the upstairs. His clothes are covered in paint, and you cannot tell that he does not always feel so well. He seems active and happy. The day before, he fixed the drawers in his bedroom. He has tried to stay productive lately with household activities because every day is different, since some days he cannot walk or even move his legs without feeling pain that he calls 'excruciating.' When he was initially in the hospital and the doctors believed he had pleurisy, they used the drug prednisone in high dosages to combat the disease. Some people believe prednisone in high dosages can be linked to avascular necrosis, a disease in which bones and joints actually die. Stephen will need a hip replacement eventually but not until he cannot walk at all. 'I was told I have to wait until it's so bad that I can't function anymore,' he says. The reason for this is that complications from surgery can be severe because of how advanced his AIDS is. Stephen and Melissa say they believe the incorrect use of the prednisone'and thus the bone disease'could have been avoided if the doctors had not believed that Stephen was not in an at-risk group for HIV infection. If he had been tested for HIV earlier, Melissa says, he would not be suffering with his bouts of pain. The couple now advocate for mandatory HIV testing for firefighters. The U.S. Army has a program requiring all soldiers to be tested every four months. But firefighters do not have to be tested. Keeping the Faith Neither Stephen nor Melissa harbors any hope for a cure for his HIV disease. 'I've had diabetes for more than 25 years,' she says, 'and they haven't found a cure for that yet. How often do you hear about anyone discovering cures for diseases?' But Stephen says he is not unlucky. He regards his disease as a 'test' and says being diagnosed with AIDS has actually strengthened his religious faith. 'I could see how this disease could make you bitter,' he says. 'But being a Christian paid off. I didn't have any of those feelings.' He says his life was uneventful until he found out he had AIDS, but now he is an advocate for AIDS education and speaks on panels at a local medical school. He says his faith and his outlook on life make him not worry about the future. 'If I die tomorrow, Melissa gets my full pension until retirement age,' he says, noting that the money would be enough to get the children through college. Melissa is not as relaxed about the topic, though. She says not a day goes by that she does not think about his disease. 'As much as you don't want to dwell on it, it's always there,' she says. 'There's nothing I can really do to help him. It's just our life.' 'For a lot of people, it's like this life-altering thing, but for me, it's not,' Stephen says. 'My life was good before I was diagnosed, and it is now.'