Bill Frear and his wife, Sandi, are happy people. They live in a house in Pinellas County, they’ve worked at the Home Shopping Network for a number of years, and they are both deeply in love after 18 years of marriage.
Eleven years ago, Bill Frear received some news that would forever impact his life. His wife was told she had lupus, a disease that causes inflammation in various parts of the body.
At the time, Bill was not too concerned because he, like many others, had no idea what that meant. He soon would get the scare of a lifetime.
After hearing the news, he headed to the public library to find out more. He said what he read was disconcerting – it said his wife had roughly less than 10 years to live.
“I was very worried and very scared,” Bill said. “I didn’t want my wife to leave me that soon.”
Lupus is a disease people know little about. The disease occurs more in women and minorities, though doctors aren’t sure why. It has been thought to be genetic, though there isn’t much information proving this theory. Lupus causes a person to be in constant pain, and the life expectancy is unknown. Many with lupus carry on with their daily lives and live long lives; others can be struck more suddenly.
“It was hard those first few years, getting used to the disease and how much it affected both of our lives,” Bill said. “But I’ve always supported her.”
After about a year, the couple decided to attend a local lupus support group that was having monthly meetings.
“We wanted to find other people with the disease and see how they were coping,” Bill said.
But what they found was upsetting. The meeting had few members, roughly 20. They said the president of the organization was cold and depressing. She talked of all the horrible effects of the disease – fatigue, achiness and constant pain.
They left the meeting feeling horrible and their hopes were down. They felt alone in this world of lupus, and they didn’t know where to turn. But they continued attending meetings and tried helping out when possible.
Soon their lives were to change again. Word got out that the head of the chapter was not running things smoothly, and eventually she was forced to resign. Sandi was asked to be vice president, and without hesitation, she accepted. She was eager to get her hands into something. Bill, on the other hand, said he was happy for her but worried just the same.
“Everyday she would wake up, and you wouldn’t know if it was going to be a good day or a bad day,” Bill said. “She might hurt too much to move from the bed, or she would be fine. I didn’t want the added pressure of the foundation to bog her down, but I knew it would make her happy.”
Soon Sandi was promoted to president. Bill helped out, doing everything he could to help the foundation. Their first project consisted of donating three books about lupus containing up-to-date information, funded by the Dunedin Women’s Club, to each library in 28 branches spread across Pinellas County.
“I had to get the right books out there,” Bill said.
From there, the activities escalated. Soon Bill found himself helping out with the foundation while he kept a full-time job as technical director in the control room at HSN. It was all worth it, he said. He just wanted to make sure his wife was happy.
“Many people with lupus lose their loved ones because the pressure of handling the disease is too much,” Bill said. “In the support groups, you see victims losing their husbands or wives because they can’t deal with it, which is a shame because that’s when they need you the most.”
The Pinellas County chapter of the Lupus Foundation began to grow, and before long it grew throughout mid-Florida. Everywhere from Orlando to Gainesville had support groups where people could go and talk about their disease. The foundation now has more than 1,200 members – a vast difference from eight years ago.
The main focus of the foundation is to get the word about lupus out. Bill said if that happens, more people will know about it and be educated. The foundation prints fact brochures, holds charity events, has four chapter-wide meetings a year and has developed a Florida chapter Web site maintained by Bill. There is only one paid employee in the entire foundation, the person who answers the informational hotline.
Bill admits lupus has controlled most of his time in the last decade and said it is overwhelming. At one point, he said, his life was filled with work and lupus; he heard the word all the time.
“I stand by her (Sandi) while she just goes and goes,” Bill said.
“I’ve always tried to help her out, but eventually I had to just find something for myself. It can all be so consuming.”
This is why Bill enrolled for two college classes this past fall. He is finally doing a little something for himself. But he can’t help but talk about his wife.
“She’s absolutely amazing, the things that she does, I’m just proud of her,” he said.
Besides serving as president of the Lupus Foundation of America for eight years, she has also testified before Congress on Capitol Hill to push for the Lupus Bill, which gives money to researching the disease. She has also attended charity events with celebrities such as Dylan McDermott from The Practice, and has set up raffles to fund the foundation’s research.
“My husband is very supportive,” Sandi said. “I couldn’t have done it without him. He worries about me a lot, but I love him for it.”The couple is happy that they both chose to take this disease and turn it around. While Sandi has had to slow down in the last few months (she stepped down from the president position in October of last year to have more time to relax), Bill continues to work on the Web site and participate in events such as the “Fourth Annual Loop for Lupus,” a walk on Sunset Beach on Treasure Island. Held earlier this month, the event raised money for the foundation and, according to the Frears, was a “gigantic success.”
“I’m just happy that she’s here and she’s done so much,” Bill said. “It’s been hard, but I keep going because I love her and I just have to.”
- Contact Emily Kapustaat firstname.lastname@example.org