As his ALS progresses, Bruce Kramer welcomes silence -- Bach, and 'Tommy'

Bruce Kramer
Bruce Kramer at home Thursday, Feb. 6, 2014 in Hopkins.
Jennifer Simonson/MPR News

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.

If you listen carefully, you'll discover that you're bombarded by noises of all kinds. The constant drone of traffic, technology, talking, and television is the background buzz of our lives.

But while the rest of the world is getting louder, Bruce Kramer is becoming quieter. This winter, Bruce has battled a variety of annoying colds, and low grade infections, and while he gets physically weaker, something else seems to have shifted in him.

"One of the things I've been thinking a lot about is how quiet I have been feeling. The quiet part is very introspective. It's very graceful and I can't say it's not pleasant. It's very nice," he said.

Kramer is also sleeping a lot. 10 to 12 hours with naps in between. Despite the sleep, he says he's almost always just a little bit tired and sometimes the fatigue is overwhelming.

"Whereas I could hang in with people for two or three hours at one point, I now hang in for an hour or an hour and a half. I have no choice. My body says, 'That's it! You're done. Go to sleep,'" he says. "Of course, it makes me wonder if I'm in a new phase now with ALS and the chances are good that I probably am."

Gain a Better Understanding of Today

MPR News is not just a listener supported source of information, it's a resource where listeners are supported. We take you beyond the headlines to the world we share in Minnesota. Become a sustainer today to fuel MPR News all year long.

Because of his dwindling reserves of energy, Bruce has been careful in choosing what he has the time and stamina to do. Sometimes in the fog of fatigue, Kramer will find little reminders of what he's lost that can still wound. An example? A recent visit by a close friend.

"He got up to leave and he put his coat on and I felt a catch in my throat. Now, why would I feel a catch in my throat watching him put his coat on? I don't put coats on. I wear blankets outside. Coats are too complicated. They don't really keep me warm -- a blanket keep me warmer -- and I depend on someone else to do it because my arms don't work, my legs don't work. Those things are always hanging. And then you have to go, now, come on. That's not where we live anymore and I move myself back into the present," he says.

Here's an edited version from more of the conversation:

Cathy Wurzer: This has got to be difficult for you. These little moments that come up, I would think that would weigh on your mind.

Bruce Kramer: Of course it does. You know I think, I think just as learning to play a musical instrument or learning to ride a horse or learning a profession, or learning a particular hobby, it takes practice and discipline to do it correctly. ALS is like that. ALS requires me to practice and part of the practice is the discipline of living in the moment and it IS a discipline. That doesn't mean that I don't slip and project too far in the future or fall back too far into the past.

Wurzer: We've talked in the past about how remaining engaged is important to you, how does that happen when you're in this new space?

Kramer: I think it is a different energy. It may be that engagement looks different. You know where before it was the patter of good conversation, the fun of joking, and that type of thing, not that I don't want to do that , but the energy that I have is much more "being" energy and not "doing" energy. It might very well be sitting with a friend and just holding hands in the quiet.

Wurzer: He says while he once tried to engage life fully as he used to know it, he now realizes it is important to engage with his life as it is. That means he's happy to just be with a friend or simply sit and think, dozing on and off, or listening to music.

Kramer: I find that music is more expressive, is more communicative, or what I feel and in some ways who I am, than the words that I write or the words that I say. The words seem really bounded right now and the music that I listen to feels more broad and bigger and it feels like me.

I'm listening to everything! I have been listening to a really great recording of the Bach B Minor Mass that has one person on a part and at the same time I'm listening to The Who album "Tommy" that was just re-released -- Herbie Hancock, choral music, some piano music....

Wurzer: I'm still a little confused about what this means. What you're experiencing and how it fits into the overall picture?

Kramer: You know, I'm a little confused about what it means too. It feels like dialing back the noise. Turning down the amplitude. It feels like going gentle. I'm finding in this space some of the best times I've had. You know it's not go, go, go, Get out there and do things. The space that I want to occupy is getting smaller and smaller and I don't mind it. I thought I would but I don't. "

Wurzer: In the research I've done, depression can be a big problem for many people with ALS. Is this what you're potentially looking at? Or something else?

Kramer: I'm not depressed. I've seen depression and I've never experience long term depression but I've experienced it in others. I am not depressed I'm quiet. And it's nice. It's very nice.

Wurzer:This is part of the winding down process for you? BK: I suspect it is. This depth, in many ways, is beyond words. What's the line from Le Miserable? There's a grief that can't be spoken. It's not grief, but it's something very difficult to explain but it's not hard to experience.

Kramer: One of the gifts of ALS has been that I can see the future on the horizon, it's the train wreck that's coming....edit to and you know the train doesn't have any brakes, so the fact that you have that on one level, it can scare you to death, but on another level it allows you to, it's that discipline of preparing and being ready and experiencing it to it's fullest level and I think that's what this quiet is is more of the experience a new facet to the experience and over time will actually result in the ultimate quiet.

Wurzer: Do you think this is the last step toward that ultimate quiet...meaning, obviously, death?

Kramer: I have no way of knowing. I still feel that I have much to give and much to offer. I just don't know. But what I do know is that this is: It's new, and it feels like it's right, and it's OK. It's really OK.