To Bruce Kramer, denying our death means we're missing out

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.

The holidays can be a difficult time if you or a loved one are living with serious health issues. It was around Christmastime in 2010 that Bruce Kramer learned he had amyotrophic lateral sclerosis, or ALS.

Also known as Lou Gehrig's Disease, the illness weakens nearly all of the body's muscles. It has no cure and it is always fatal.

At the time of diagnosis, Kramer was given anywhere from six months to two years to live. That was four years ago.

Because his body continues to weaken, it is difficult for him to get out of the house. The effort is exhausting, so friends and family come to him.

On a recent gloomy Sunday afternoon, for example, members of the Good Samaritan United Methodist Church Choir crowded into his Hopkins living room. He used to direct the choir, but he's been unable even to attend services for months. Members wanted to come sing for him again.

"May your days be merry and bright," they sang, "and may all your Christmases be white."

Judging from his face, the music had transported Kramer somewhere else. He looked at once both blissful and sad.

He has described this point of his disease as "winding down." As his death draws closer, he's been asking himself questions that many of us would ask when faced with our own mortality: Did I do the things I wanted to do? Did I say to loved ones the things I wanted to say?

"I've had some pretty funny conversations with my kids," he said. "I wanted to make sure they knew that I really don't want to die.

"I'm going to miss them. Going to miss them a lot. And I think they'll miss me too.

"I'm really blessed. Both my sons are very comfortable talking about what I find that I need to talk about. I find myself needing to say things like 'I tried to do my best, tried to be the best parent I could.'" Kramer paused. "'Tried to be the best husband I could.'

"And I find myself just wanting to make sure that they know how rich my life has been because they've been in it."

Kramer explained that what he needs to hear from his loved ones now is not "Oh, you've done plenty! Don't worry about it." The dying, he said, do not need to be told that everything's OK.

"What we're saying is, 'Please hear me. That I did my best. And accept it. Accept the fact that in this process, as I go, I will go with a much more peaceful heart, knowing that you accept that I did my best.'"

Not everyone would welcome such a frank style of communication on such sensitive topics. The effect, though, is healing, he said.

"I've been preparing my family and my friends and myself for this moment now for four years," he said. "I have friends who are asking me questions very upfront — 'Are you afraid to die? What does it feel like? Is there something that you wish you could have done?' And actually, I'm very appreciative of those questions.

"The healing comes in the honesty, because in the honesty, we can actually express what we really feel. So it's not so much that a person is able to ask a question like, 'Are you afraid to die?' It's the fact that we have built such a strength of relationship that they can ask that question. And in my answering it, I can also communicate just how important their friendship has been to me."

To go in the other direction, he said — to take refuge in denial — would only lead to bitterness. People wouldn't know what they were allowed to say.

"They're afraid to talk with you," Kramer said. "And you're afraid to talk with them. Because you haven't acknowledged the truth of the situation.

"You're not fooling anyone, you know. So you might as well acknowledge what's going on. And live through it. Live into it. And reap this beautiful reward of people that you love expressing their love."

"I don't buy that there are just people that don't want to do this. What I buy is we have been taught to ignore the gift that death brings to us such focus, such life. So I say, 'Grab your death and live into it. It's so wonderful.'"