“Ellen’s condition didn’t have a major impact on us immediately,” says Stuart Smith. His wife of almost 35 years was diagnosed in 2004 with Ehlers Danlos syndrome, a rare genetic disorder. “She had surgery on her arms that we thought were injuries from swimming. We thought, ‘It’s going to be over and then our life will get back to normal.’ ”

“It affects the connective tissue,” says Ellen, 57, who now has casts on both lower legs after having surgery on her feet and ankles. “Every bone, every organ is affected. The tendons and ligaments get looser and looser.” She has just endured her 15th surgery, 5 of them in the last 18 months, with more on the horizon.

In January 2007, Ellen had to leave her job as an eighth-grade teacher in Burrillville. She says it was the hardest thing she’s ever done. “I wasn’t ready to leave my career. It was a huge financial loss for us, and I felt so responsible that I was creating a burden in my marriage. I always believed in my heart that not only would I find out what was wrong with me but that I would get myself better. I pushed myself for years, but at some point there was no choice. The realization that I wasn’t going to get better was the biggest jolt. I went from master swimmer, swim coach and teacher, to disabled.”

Stuart, 60, who had worked for the Department of Children, Youth and Families for 30-plus years, retired in June. “The impact on our lives is much different now that we know it’s a disability,” says Stuart. “It’s the loss of dreams, the things we had hoped to do in retirement. But you give that up and then you start looking for another life.

“It took a long time for me to realize my wife is disabled. I kept thinking she’s going to walk again, we’re going to swim together again, we’re going to take a train trip across Canada, and the reality is we’re probably not going to do that stuff or at least not in the way we thought.”

“We would be happy to go to the beach together and have me walk in the sand. Now I sit in my wheelchair on the edge of the sand and Stu takes his walk.”

“It would be really difficult if you did not have a strong marriage. We’re pretty happy every day. I feel incredibly lucky: we have four healthy sons and we’re still in love.”

Ellen writes poetry now. “I write a poem when I can’t get past something, am fearful about my condition, and emotionally, it gets me through it,” she says.

“Stu has never made me feel guilty or insecure about his love. If someone had told me we would be living this way, I would have said, ‘I don’t know how I’ll do that.’ But you just dig deeper and when you think there’s no more down there, you dig deeper yet. There’s always more.”

“Ellen doesn’t talk about the pain.”

“Sometimes he looks at me and knows I’m struggling. He touches me and asks, ‘Are you okay?’ and the tears just start flowing.”

“I don’t say, ‘It’s going to be all right,’ ” says Stu. “I just say, ‘I’m going to be with you.’ ”