Living with ALS: Wrestling with angels

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 and hear the stories by clicking here.

For Christians and Jews, this week is one of the holiest. Passover, for Jews, marks freedom from slavery and the exodus of the Israelites from Egypt. Holy Week, for Christians, marks Christ's crucifixion, death and resurrection.

"In spite of its darkness, I have always loved Holy Week. It is the complete package. A story in which each one of us can find some element to which we can relate," Bruce Kramer said during a sermon on Palm Sunday at Edina's Good Samaritan United Methodist Church. He's been a member of the church for many years and was asked to speak about his illness, and what it has taught him.

"Three and a half years ago, disease brought me to the precipice. Will I live into the life I have been given, or die in anger, frustration, grief? I didn't hear any answers from God, at least not at first," he told those in the pews.

But he kept asking questions, and kept listening for answers.

"I'm in such a good space. I wrestle with angels but I also commune with them and some of them are in human form."

Now, he says, "I'm wrestling with angels."

That vivid metaphor is from the Bible. Depending on the interpretations, it's about Jacob's struggle with a man, an angel, or with God. I t can also be understood as Jacob confronting his failures, weaknesses and sins, and facing God.

"Humans have some experience with angel wrestling and it's an experience where generally you come out of it a little wounded but you also come out of it a little stronger. I'm doing a lot of thinking about how, moving through ALS into its final phases, that works."

And then there are the more earthly, physical needs to attend to.

"I have very little strength left in my hands," Kramer said in an interview. "My hands fatigue easily and so my wheelchair is difficult to drive."

Kramer also notices his voice is weaker.

"I feel softer, much softer, I think a lot of that is just not being able to get the air underneath, he said. I can't always make myself heard if my caregiver is in another room."

At the same time, his mind and emotions are strong.

"I'm in such a good space. I wrestle with angels but I also commune with them and some of them are in human form with so many good friends who help take care of me. I have so many great moments with my family. They're very good at remembering I'm still in the room even when I feel really quiet," he said. "I feel just surrounded by love."

In the biblical story of Jacob and the angel, Jacob wrestles with the angel all night and then asks the angel for a blessing. It was a request for something similar that led to an extraordinary moment for Kramer and his family at the Nobel Peace Prize Forum last month in Minneapolis. The Dalai Lama was a keynote speaker at the event, and at the conclusion of a question and answer period, the Tibetan winner of the 1998 peace prize was asked to bless those in attendance.

"Blessing? Of course," the Dalai Lama replied. "I'm Buddhist, so sometimes I am a little bit skeptical of a so-called blessing. Blessing must come from our own action. Our own motivation."

The Dalai Lama rose from his seat, but instead of walking to the nearby podium for an honorary presentation, he began walking toward the opposite end of the stage and pointing to where Bruce Kramer sat in the darkness.

"How would he know I was there?" Kramer recalled. "And then to point to me like, 'There you are! What are you doing over there?' Like he knew me all his life."

In an unscripted moment, someone from the audience behind Kramer handed the Dalai Lama a snow white, silk scarf. Holding it to his head, the Dalai Lama held to his forehead and said, "Meanwhile, my blessing." And then, "Thank you, thank you!"

Kramer wrestled with that moment all week, and then realized, "he didn't bless me at all. That's not what that was about. It was what he had talked about earlier. A blessing is in one's action and one's motivations and it's a charge. What blessings will you give?"

"It has caused me to wonder how, as my body becomes weaker and weaker, that I can bring healing in a world that so clearly needs healing, and I realize in many ways it was like reminding me of a purpose that I took on more years ago than I want to admit, when I became a teacher. You don't become a teacher because you're interested in the money, you become a teacher because your purpose is to help people become their potential, the best that you can help them be at the time you're with them. And I admit in my life I lost sight of that at times, but that has really clarified with ALS that my role now is, as a human being, is to offer healing as I try and tell you what it's like to die."

Of that moment with the Dalai Lama, Kramer also adds this: "I have come to the conclusion that he was telling me that I'm not done, and that I'm not done until I'm finished."

Here's a video clip from the Dalai Lama's appearance. It begins with the request for a blessing.