A friend's ALS death in the circle of life

In Chicago
Bruce Kramer and his wife, Ev, in Chicago in the summer of 2013.
Photo courtesy Bruce Kramer

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.

Fall is a time of winding down, of reflection as the seasons change. This late summer and fall, Bruce Kramer has been in a reflective mood, living with ALS, a fatal disease without a cure in which cells waste away and the body becomes paralyzed.

Last week, Kramer talked about the emotional changes he's been going through with the birth of his first grandchild. Her arrival has been a time of great joy for Bruce and his wife, Ev. But the birth came just two days before the death of a close friend who also had ALS.

"I won't use his full name if that's OK," Kramer said. "He was one of those people who was really larger than life. He would tell stories like you can't believe and for every 10 stories he would tell I might get a word in edgewise."

Kramer found a safe haven with his friend as they talked together freely and sometimes with raw emotion about the devastating effects of ALS, and dying without fear of embarrassment or worry.

"Well, you know, family doesn't want to talk about your impending death. That's not something they want to talk about," Kramer said. "But with my friend Paul, Paul and I could talk about what we were hoping for and the things we loved about life. And, we could talk about what we recognized as we are both winding down, circling under, spiraling down. It was just really honest and really open." Kramer last saw Paul over the summer, when they met for lunch. He'd lost a lot of weight and was tired.

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"And then, on the day that my granddaughter was born, after leaving the hospital where she was, my son and daughter-in-law took me out to the hospital where he was. It was one of those things where, often, when a person is dying they may be communing with some other place, but then they rally. And suddenly they're lucid and they start talking and they're sitting up and it fools the family and friends who think, oh, they're getting better. It's kind of the last energy. And I just happened to catch him at that and say things that we needed to say," Kramer said.

"And then, he died about two days later. So, it's been a real circle. A real circle of life -- an overused cliche, but it works. There is death and there is birth, and here we are. And, what are we going to do with this beautiful gift of life? What Paul did with it was wonderful.," Kramer said. "He reached out and reached out and reached out. He was one of those people that walked with his fellow humanity, and I think did it in a way that was respectful and beautiful and, in some ways, quite holy. I miss him, but we both knew that if we were going to become friends, then this moment would come and that's how it works." Sometimes, that safe place for speaking honestly could also be a mirror, and Kramer talked about how he works through that.

"Whenever I meet a person with ALS, I assume they're my brother or sister, and I assume that we're reflecting back to each other our futures because it's so unique how it comes into each person. So, with Paul, Paul's onset was in his breathing. My onset was in my limbs, so I could see what was happening with breathing although I'm not at that place yet. And so, we see each other's future when we meet, and, yet, it is the most raw, and I have to say the most beautiful and terrible thing in that it allows us to cut through the other stuff," Kramer said. "What do we have to project to each other except the person that's right there. And, so, that part of it has given me -- I think it's given me great joy. And it makes my soul sing that I've had the opportunity to connect with people like Paul on a level that -- quite quickly -- we don't mess around. We don't have time."

Kramer said that he and Paul never talked about a fear of dying. But Kramer said he does of fears of a different sort.

"Paul and I never talked about fear. That wasn't what we talked about. We talked about regrets and hopes. We never talked about fear. And, really, I tell people I'm not afraid to die. What I'm afraid of is, I'm afraid of the hurt that I know it will bring to my family and my friends, and I hate that thought. I wish I could save them from that, but my death is just a part of the way the world works," Kramer said. "Nobody I know of -- well, depending what your religion is -- has been able to avoid death. I look at that space and I peer into it, and there's just nothing fearful about it. What is fearful is more looking back at the life that I would leave and the people that I love and hating the fact that you always hurt the one you love."