A life 'well equipped' to handle ALS

Editor's note: This is part of our continuing series of stories about Bruce Kramer, the former dean of the College of Education, Leadership and Counseling at the University of St. Thomas, as he copes with life after being diagnosed with ALS, also known as Lou Gehrig's Disease. You can read all the stories in the series by clicking here.

It's been said that adversity either makes or breaks a person.

For the past few years, as we've followed Bruce Kramer, he's faced mounting losses brought on by the incurable disease in his body. As the neurons that communicate with cells in his brain and spinal cord gradually die off, ALS renders his body's muscles useless. That affects everything, including movement, talking, eating and breathing.

After each conversation, we hear from listeners who are amazed by Bruce's strength, grace and candor in the face of ALS. Bruce Kramer shrugs off those comments, saying that what is happening to him is simply the way life can go and he's made the choice to embrace his disease. He's also said he's "well equipped" to have ALS.

That last statement might sound odd until you understand his background.

First, there's music.

"Probably sometime during the day, I will come to pieces like what I'm about to play for you," he says before the sounds of Morten Lauridsen's "Contre Qui, Rose?" fill the room. "It's probably what gives me my greatest joy -- to be able to listen to music."

His grandfather was a musician, a stride piano player, and "I took piano lessons, but really the first instrument I chose for myself was percussion. I think it was because I liked beating on things."

"I couldn't remember how to read music. I was just awful. The band director would say, 'Well, can you keep a steady beat?' And I thought I could," he said. "But then concert season came along and we had a slew of percussionists and he handed me a bass clarinet and said, 'Why don't you learn to play this?' So I did."

Born in Missouri and raised in Indiana, Kramer has two younger brothers. He remembers a pretty good childhood, but his mother was frequently ill.

"When you have something that is recurring, it keeps coming back, it teaches you to accept the small victories, the little things that go right. The single days when it's good take on more meaning than the many days where it doesn't feel right," Kramer said. "That is tremendous preparation for ALS. So in a funny way, I'm beholden to my mother for helping me to be able to handle this the way that I handle it."

By the time Kramer was in high school, his mother was spending longer periods in the hospital, and as the eldest he was left to take care of the family. That meant, in part, learning how to cook.

"I just started using 'The Joy of Cooking' and started on Page 1 and learned how to cook that way," he said. "But it wasn't easy."

Still, he became a gourmet chef and passed some of those skills on to his own sons. Now they and their wives commandeer the Kramer kitchen at least once a month.

"You know, it is very intimate to feed someone. And of course, we work really hard to back away from that intimacy. We insist that our children learn to feed themselves," he said. "But it all starts out in a very basic, very intimate way, and I have found, as I move through ALS, one of the things that my kids do is feed me, and my wife feeds me and it feels like the circle is closing, coming back around. So food has always been important for our family. "

Education was also important to his family: Kramer's parents and grandparents were all educators, and he slogged his way through college while working at the same time. The effort was worth it, though, because it was in college that he -- literally -- found his voice.

"To sing is a very intimate thing. We are all used to speaking with each other. But to hear someone sing is a very different experience," he said. "I chose singing as my instrument because I just felt I had started so late instrumentally that I would never really perfect an instrument like I could as a singer. So I became a singer and then went into conducting after that."

Themes of vulnerability, intimacy, connection continue to run through Kramer's life. "They shaped me and in many ways made it possible for me to do ALS the way I'm doing it and I don't know if everybody has that kind of opportunity."

That's why he says he's well equipped to have ALS.

"I have resented it. I've been angry about it, I've been very sad about it, but in this time, in this place, the irony is not lost on me that I couldn't do this without the preparation that my life, my family, my mother and her struggles, have given me," Kramer said. "I'm actually quite grateful and thankful that I've lived long enough to be grateful."