In Sickness and in Health
Ramona Johnston has Huntington’s disease. She and her husband, Bill, the Chargers’ public relations director, talk about the disease, the effect it’s had on their two children and their unconditional love.
BILL AND RAMONA JOHNSTON, both San Diego County natives, went to Helix High School together in La Mesa in the 1970s. They weren’t high school sweethearts, but it wasn’t for lack of trying on Bill’s part.
“Mona was a cheerleader. She was cute and smart and nice,” Bill recalls. “I tried everything I could to convince her I was the one for her. We had a few dates, but she just wasn’t that interested.” When they met up again in a class at San Diego State University a few years later, he convinced her to give him another chance. This time, it clicked. They fell in love and were married in 1983.
Life was idyllic. Bill had landed a job with the San Diego Chargers in 1981, after interning with the team in college, and he’s been there ever since, outlasting several coaches and general managers. Since 1990, he’s been the team’s high-profile director of public relations. Ramona, a summa cum laude graduate of SDSU, pursued a career as an elementary-school teacher, then stopped working for a while to take care of their two kids—daughter Hayley and son Jared—in their dream home in Jamul.
And then, in 1999, the Johnston family’s perfect world came crashing down. Ramona started forgetting things, falling down, getting into minor car accidents. Her walk was different. She suddenly found herself struggling to understand even simple things. Something was seriously wrong. After months of medical tests, doctors determined she had Huntington’s disease (HD), a devastating brain disorder that causes uncontrollable bodily movements and robs people of their abilities to walk, talk, eat and think rationally.
Everybody carries the HD gene, but in some it goes awry, leading it to attack the brain. The disease is fatal. Children of a parent with HD, which is incurable, have a 50-50 chance of inheriting the condition. The disease can start as early as childhood, but typically doesn’t manifest itself until people reach their 30s or 40s.
The most famous person to die from HD was legendary folk singer Woody Guthrie, but at the time Ramona was diagnosed, neither she nor Bill had heard of it.
“It was crushing news,” says Bill. “Our first thought was ‘How do we tell the kids?’ They were 13 and 10 at the time. We sort of eased them into it. We said, ‘Your mom has a neurological disorder.’ But as soon as we told them the name of the disease, our son went to the Internet. That’s when he discovered he could inherit this.”
Since Ramona’s diagnosis, life for her has changed in every conceivable way. The disease has taken away most of her physical coordination; walking has become too dangerous. She falls regularly now, including a recent spill that landed her in the hospital. Last year, she moved to an assisted-living home in La Mesa because she needs 24-hour help with all of life’s daily tasks, including bathing, dressing and eating. But she often just doesn’t want to bother anyone for help. Though she is still aware of what’s going on around her, talking has become a challenge; understanding her is difficult.
She talked with San Diego Magazine about what her life is like with HD, giving short but heartbreakingly meaningful answers. Asked what she misses most about her life pre-HD, she says, “I miss walking. I used to walk every morning.” When she first learned she had the disease, she says, “I didn’t believe it . . . I cried for three days.” The hardest thing about this entire ordeal? “My kids.”
Bill sees Ramona at the care facility every morning on his way to work. And no matter how long a day he’s had at Chargers headquarters, he returns to say good night. His love and loyalty are limitless. “She’s my wife. I’d do anything for her,” he says. “She’s the sweetest, most loving person I’ve ever met in my entire life.”
WHILE RAMONA’S diagnosis has been a monumental hardship, the Johnstons have remained a strong and functioning family unit. And for all of her physical and emotional issues, Ramona is still quick with a smile and a hug. As hard as it has been to watch his healthy and brilliant wife deteriorate from this disease, says Bill, it may have been even harder for Ramona and him to watch their two children suffer the emotional pain and fear associated with HD.
A child of someone with the disease can take a blood test to determine whether they have the malfunctioning gene. Jared was devastated when he heard the news about his mom. When he discovered he, too, could have the gene, his life began spiraling downward.
“Jared was a great student and athlete, he loved basketball, and he got A’s,” says Bill. “But he basically lost his drive for a while. He gave up in some ways; he just really had a hard time with this.”
When Jared turned 18, “he told us that he was going to be tested,” says Bill. The test was negative. “Jared’s doing well now. He’s got his life back on track.”
“That was the best day of my life,” Ramona says.
Now, Hayley faces the same grim possibility. A freshman at the University of California, Santa Barbara, Hayley has chosen not to be tested.
“She’s handled this situation incredibly well, but differently than Jared,” Bill says. “It just shows you how different two of your children can really be. They’re very close, but she keeps a lot of this inside. That’s her way of dealing with it. She’s doing wonderfully. I’m not sure if eventually she’ll decide to be tested or not. Of course, that’s her decision, and we’ll support whatever she decides.”
Meanwhile, Bill has turned his family’s private pain into a public crusade. He’s president of the San Diego chapter of the Huntington’s Disease Society of America, and he’s helped boost contributions to the chapter tenfold in three years. One of 31 chapters nationwide, HDSA-San Diego, which provides support for at-risk individuals and caregivers and also funds research for treatments and a cure, was recently named the national HDSA chapter of the year. Bill has recruited just about every prominent player on the Chargers roster—from Philip Rivers to LaDainian Tomlinson, as well as former coach Marty Schottenheimer and the Spanos family, to raise money and call attention to the cause.
“The Chargers have given hundreds of thousands of dollars and have given so much of their time and energy to this,” says Bill. “They don’t seek publicity. You approached us to do this story. They just do it because they care.”
The story of the Johnston family is, above all, a story of love and courage. The family has faced unthinkable fears and hardship but remains a loving unit. Bill is a stoic man and former college athlete who’s never been one to parade his emotions. He works 12 to 14 hours a day in the macho world of professional football. But he spends much of his private time in tears.
“It makes me cry every time Mona struggles to speak—and then it’s usually to apologize for spilling something or to thank someone for helping her,” Bill says. “We cried the day we realized she needed to live in an assisted-care facility, and how scared she was of being alone and forgotten. I cry every time she cries. Huntington’s disease just makes me cry.”
But he clings to the hope that there is a cure out there. “We’re definitely getting closer,” he says. “The problem is that it’s a rare disease, so it’s hard to raise the kind of money needed for research. But I’ll spend the rest of my life on this. If not for my wife, then for my kids. And for their kids.”
The story of the Johnston family is, above all, a story of love and courage.
To help, go to hdsasandiego.org or call 619-225-2255.