As his ALS progresses, Bruce Kramer finds joy in daily life

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.

You might think that years of living with ALS would leave a person incapacitated emotionally as well as physically. In the case of Bruce Kramer, you'd be mistaken.

The physical devastation is real enough. Since his diagnosis in December of 2010, he has experienced enormous loss. He cannot move his limbs; he needs help with the tasks of daily living. His voice continues to grow weaker and his breathing is bit more difficult.

A natural reaction to all that loss would be grief. But Kramer disciplines himself to live in the moment, a practice that holds most of the fear and grief at bay.

"I'm just thinking about what I see right now," he said recently. "There's a kitten asleep on a chair, and he just looks so peaceful. And there are pretty flowers that Ev [his spouse] has bought, just to brighten the room a little bit.

"We have a lot of light pouring in, even though it is an overcast day, and all of that serves to be part of the moment. It's a moment that I can be in harmony with and feel very much a sense of peace, a sense of joy, and I can hold apart those things that would compromise the experience."

Even a well-fortified dike can spring a leak, though.

"Oh, I leak all the time," Kramer said. "I don't want anyone to think that I'm not sad. I am sad.

"This life is such a beautiful gift, and I've come to realize more and more what I suspected long ago. And this sounds very idealistic and very romantic, but what I suspected was that in the end it was friendship and love that really mattered. And what I'm discovering is that in the end, it is friendship and love that really matters.

"And that creates, in so many ways, a pool of sadness ... . But it's not despair and it's not grief. It's just sad. I'm sad that I will be leaving and that I won't get to be a part of these things that I have enjoyed so greatly. So yes, there are leaks. Every day I cry. Every day I feel that sense of loss.

"It doesn't feel like I'm processing it to get it over with and then get on with my life. Getting on with my life is getting me to my death. And so I'm kind of holding that at bay."

For Kramer, ALS has meant not only loss but transformation. He explained that the transformation, in fact, comes from "embracing the loss."

"It's actually working through the things that I no longer can do," he said. "And being able to still find a sense of integrity and personhood, and that I can celebrate the beauty of the day in spite of those things. That, to me, is transformational."

Celebrating the day, though, does not mean letting go of regret. Kramer called regret "a very good teacher," and said that the credo of "No regrets, man," struck him as "oddly immature."

"I've got a lot of regrets," he said. "In those regrets I've had the opportunity to move beyond the destructiveness of the guilt and shame that often comes with our regrets.

"Regret is like a mountain road, where it's very narrow and you're right on the edge. And on one side is another side of the mountain that you have to climb: What are you going to learn? What are you going to become? On the other side is the abyss of guilt and shame, which you can fall into and never get out of.

"Guilt doesn't teach you anything. Shame doesn't teach you anything, except that you're capable of it. And it's such a human way for us to react to our own regrets.

"Regret, on the other hand ... if you can follow that ribbon on the side of the mountain and turn yourself toward what's above you, it's something that can bring you into a humanity that you really can be happy with."

Listeners have followed the progress of Kramer's disease through dozens of these interviews. One of them wrote to marvel at the way Kramer is living with ALS. Instead of pulling in, the listener wrote, Kramer has expanded and opened the experience.

"That is a remarkable observation by your listener," Kramer said. He related the idea of expansion to his practice of yoga.

"When we breathe in, we feel like we're expanding, we're expanding our rib cage," he said. "We feel that expansion. And then as we breathe out, we feel ourselves compressing around that. And what we try to learn to do in yoga is to breathe in with that expansion and then expand more as we breathe out.

"In that expansion is our projection of our humanity. Of who we are at our very core as human beings.

"And in some ways this long, wending process of dying with ALS has been an exhale for me. In a yogic sort of way," he said. "Where I've been granted the ability to expand into a greater universe in the exhalation."

Doesn't that expansion make him feel vulnerable?

"There's vulnerability in everything," he said. "I'm already vulnerable. I mean, I'm a man who can't move his arms or legs. What more vulnerability could you want?

"Vulnerability actually opens me to that expansion. It allows me to connect far more with this world that I have come to love so much. And in that, I think, is really the gift of life."