It reached the point at which Terry-Jo Myers simply could tolerate the pain no longer. So in the middle of another sleepless night, she went to the kitchen, grabbed the sharpest knife she could find and decided to end the agony.
After suffering through nine years of excruciating pain, Myers figured she had been tortured enough. Only one thing saved her. She went to the bedroom to take one last look at her young daughter, and changed her mind.That happened four years ago. She never told her husband.
"I didn't have the courage," said Myers, one of 144 players in the ShopRite LPGA Classic, a 54-hole event that begins Friday at the Greate Bay Resort & Country Club.
"He read about it. He's never really said anything. There's a very high rate of divorce and suicide."
Myers, 33, has interstitial cystitis, an incurable disease that irritates and scars the walls of the bladder. It can drive its victims to the brink.
"It feels like there's a thousand paper cuts lining your bladder wall," Myers said.You get frustrated, cry a lot and basically try not to take your own life. There was one particular person who just threw herself in front of a train.
Terry-Jo Myers
LPGA player
"When urine hits it, it's very painful. Researchers don't have all the answers yet. I'd average 50, 60 trips to the bathroom every single day, maybe 15 to 20 times at night. You get the sensation that you have to go, even though you know only a thimbleful's going to come out. Not a day goes by when you feel any better, or worse. Finally, I said, `This is not the way I want to live my life.' "
Approximately 500,000 people are known to suffer from IC, though some estimates suggest six times that number either haven't been diagnosed or have been misdiagnosed.
Myers found out she had the disease in 1983, when she was 21.
"It happened overnight, and nobody was able to tell me why," Myers said. "They could see that my bladder was lacerated. The urologist told me, `This is what you have, and you're going to feel this way the rest of your life.' I had no one to turn to. I was on my own. You get frustrated, cry a lot and basically try not to take your own life. There was one particular person who just threw herself in front of a train.
"It's not as rare as you think. But 10 years ago, I thought I was the only one who had it. It took me a long time to realize I wasn't."
Actually, Myers is one of the more fortunate ones. Two years ago, she began taking the drug Elmiron, which produces a protective lining on the bladder wall. Not yet approved by the Food and Drug Administration, it works in only about 33 percent of the patients. Now, Myers leads a relatively normal existence. But she'll never forget.
"You have plans as a couple, and all of a sudden it's `I can't go to dinner,' because I can't even make it from the house to the garage without having to go to the bathroom again," Myers said.
"Until this past year, I couldn't take my daughter to a park that didn't have a bathroom. I've withdrawn from tournaments, because I couldn't make it to the next bathroom. I'd tell people I hurt my wrist. I've had my whole body shut down, where I needed to be catheterized. I've driven on interstates at over 120 mph, to hospitals, with no regard to my life. I didn't want to hurt anyone, but I didn't care.
"It's horrible to live that way. How do you describe it? Traveling made it much more difficult, but at least it took my mind off it. I'm a pretty strong person. I just didn't complain in front of people. I had tears, plenty of them, but I kept them in private. My husband's wonderful. I've been with him since I was 17. He knew this going in (to their marriage).
"I'm a whole new person. I'm not a nervous wreck. I never told anyone. Now, everybody out here's well aware of it. I still hold so much inside. There's a lot of hurt from all those years. There's a lot of stress. I kind of hold back a lot. It seems to come out when I speak publicly."
Myers has become a national spokeswoman for the IC Association, as well as for the company that produces Elmiron, which could be available with a prescription by the end of the year. She has spoken before Congress to raise funds for research.
"I never asked, `Why me?' " Myers said. "Why not me? I'm nobody special. I wanted to be perceived as a whole, healthy person. That's why I kept secret. Who wants to be this person with this bladder thing. Some Hollywood actresses supposedly have it, but they don't want it to come out, because they're afraid it'll ruin their careers. It's a messy disease, not something people want to talk about. They don't understand it. But it's left me doubled over in pain. I wish some famous person who has the disease would come forward. But I'll carry it until that happens."
Myers has one victory in her 11-year LPGA career, in 1988, when a pair of rain delays during the final round allowed her to make added trips to the restroom. Her best finish since then is a tie for sixth, which she has done twice, including two months ago at the Sara Lee Classic in Old Hickory, Tenn.
"I just want to play golf," Myers said. "I was told I probably wouldn't be able to do that. I don't know how to concentrate on playing golf. I was just trying to get around the course. Now everyone knows why I was on edge. That's not my personality . . . I'd be walking so fast, just to get to the bathroom. I'd hurry a putt, and I really wasn't thinking about whether I made it or not. Now, my peers are more compassionate because I'm so much calmer.
"I'm mad that I have this, but I don't feel sorry for myself. I have my tears and my anger. I took for granted what it's like to be healthy. I don't want some 21-year-old girl to wake up one day and not know that there might be some help available, without any hope. If I can do that, that's the world to me."