James S. Russell: It hasn’t been that hard to mesh our lives together. I think we were both really grateful to find each other. That was a big motivator. And partly it’s because we can be separate very successfully. Steve’s disability is progressive, so he wasn’t in a wheelchair when I met him. He had a little funny, rolling walk -- that’s very characteristic of the muscular disability that he has -- and that was it. We talked about that because it was important for me to know. But I think one of the smart ways I dealt with it was by not over-anticipating. I said to myself, Well, you know it’s progressive. I don’t know what this means. Why don’t I, for a change, enjoy what we have now? You take things as they come, and then you deal. And Steve makes it pleasurable to live with him. He has to deal with a lot, but it doesn’t define his existence. He doesn’t want to be the disabled guy who happens to be a pianist.
It’s a little hard for me to leave for long periods of time as the disability has progressed, but I was surprised when I was talking to someone recently who said, “Oh, so you’re the caregiver.” That had never been said to me before. I was really taken aback. I said, “Is that who I am?” To be identified as “caregiver” is a little spooky for me, just as Stevie doesn’t want to be “disabled guy.” Of course, I do that, but he takes care of me in lots of ways, too. It’s a mutual thing.
Photography by Eric Ogden
The New York Festival of Song (NYFOS) was founded in 1988 by Steven Blier and Michael Barrett. "I derive a lot of animal comfort from being with Jim," Blier explains. "I like being near him. There’s just this great sense of home with him. It’s the kind of thing that no one can match-make for you, because it’s so deep. But now, after being married, when I hold Jimmy, I have this feeling of, This is my husband, not just some guy I have slept with for 15 years."
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