Living a love story cut short by ALS
On or around Valentine's Day, millions of couples become engaged to be married. Many of them will take some version of the traditional vow to stay together "for richer for poorer, in sickness and in health."
It's easy to say when you're healthy. But even the strongest relationships can falter in the face of disease and disability.
Bruce Kramer and Ev Emerson had been married for nearly three decades when he was diagnosed with amyotrophic lateral sclerosis, or ALS. He is likely in the final months of life. And though their marriage remains strong, the couple have faced profound changes.
"I guess I expected I was going to have 50-plus years with Bruce," Emerson said recently. "And I think the way it's changed the most is that I know it's a finite number of days and hours and weeks. So I try and make it count. I try and make every day count."
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Before his diagnosis four years ago, Kramer did a lot of the housekeeping and cooking in addition to working as a dean at the University of St. Thomas. Now, unable to move his arms or legs, he relies completely on Emerson. It has meant a shift in their relationship.
At first, Kramer worried about what the change would do to their marriage. When one partner becomes the other's primary caregiver, daily tasks like feeding and bathing can put the caregiver in a new and different role.
"I've gone back and looked at the journaling I did right after I was diagnosed and there's a lot I wrote about where I was very concerned about this change that I could see coming," he said. "Would we be able to survive that kind of change?"
They have survived, and more than that: They have found a deeper sense of intimacy.
"It seems to me that intimacy has to change," Kramer said. "Intimacy has to grow, and our definition of what keeps us connected has to shift, but it would have to anyway.
"You know, we would have retired someday. Then what? One of us was going to get ill at some point. Then what? So these things [that] have happened to us have just happened more quickly than we anticipated."
Emerson and Kramer count themselves lucky that they had 30 years in which to build a relationship before ALS arrived in their lives. "I encouraged Ev with her teaching," Kramer recalled. "She encouraged me with my dreams of travel."
And since each was a musician, they shared a love of music.
"There's nothing more intimate than two people making music together," Kramer said. "I mean, if you ask me, 'What do you miss the most?' There's so many things I miss, but I miss that piece especially. We would just sight-read music together and enjoy this particular line, this particular phrase."
Both Kramer and Emerson spoke of the need to be realistic about what they have, rather than concentrating on what they've lost.
"I think we still, from time to time, feel cheated," Emerson said. "I think one of my dreams was taking my grandkids, with Bruce, camping. Because we loved that so much. And obviously that's not going to happen. ... We talked about it many times, that we would take our grandkids traveling with us someplace special. So I don't think we've ever really gotten over that, but we have to go on."
"Sometimes it's easy to flip out and be angry again," she said, "but I've tried to stay in acceptance because it feels healthier to me."
"Ev is right," Kramer said. "We've found acceptance. We accept what has happened. I think that there is something far deeper, a gratitude that the two of us are still together ... and the gratitude wouldn't come without accepting the situation as it is. Not for the way we wish it would be, but as it is."
Kramer's love for Emerson and his love of music find their intersection in a particular group of pieces by Johannes Brahms.
"I love the Brahms piano intermezzos, and one of the reasons I do is because Ev was working on those when we were first getting to know each other," he explained. "I would deliver her to a practice room at a local university so she could practice, and then when I'd come to pick her up I'd stand outside the door and watch her. And I just fell in love with her, watching her play these pieces."
"If I had known that," Emerson interjected, "I would have covered the window!"
"Yeah, I know," Kramer said. "So why do you think I didn't tell you?"
With Brahms as a soundtrack, Kramer fell in love fast. "By the end of the month, I had a hard time not thinking of her," he recalled. Emerson, though, didn't need that much time.
"I knew that he was the one," she said, "the very day that I met him."