Living with ALS: Contemplating the right kind of 'Endgame'

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.

This is the time of year for Halloween, All Saints Day and Dia de los Muertos, observances that commemorate the dead, an afterlife and the human connection between them. Still, death can often be something that many people have a hard time talking about.

Bruce Kramer, who has ALS, or Lou Gehrig's disease, has been thinking about that connection a lot lately. Despite his best efforts, he says his losses are mounting. He recently wrote about Francis Cabrel, whom he calls his "French muse," and who sings a song about ships in a harbor, ready to set sail: "J'avais des reves pourtant." The symbolism is unmistakable.

"I have dreams sometimes," Kramer says, in translating the refrain. "I did have dreams and I still have dreams." And he's been thinking lately about the dreams he used have of his future before the onset of ALS, which lately has taken a harder turn.

"The loss of neck strength came really fast and my hands now are almost useless. So, between the two, not being able to hold my head up well and not being able to use my hands to gesture when I talk, it means that I feel a little more diminished. It took me three weeks to get through that and figure out what that all meant," he said. Writing about it was hard, and it was harder still to show it to his wife, Ev.

"It was so raw, I just couldn't let it go. And then I destroyed one [essay] and wrote another one. And I didn't let Ev read that one either because it was so raw," he said. "I just thought, 'nobody needs to know this kind of detail' or the kind of -- just the grimness that I was feeling."

But in the end, he opted to share the feelings.

"I take that space. It's my space," he said. "My choice has been to share that with the balance that I also feel in my life. I'm never totally grim. I'm never totally depressed. I'm never totally angry. Those just aren't good places to stay."

Still, the space between the grim and joyful is thin.

"I'm not afraid to talk about being angry or depressed or just feeling overwhelming loss. I just want people to know that as I write that I also feel remarkably blessed, so those two things have to be there," he said.

The title of the most recent post on his online Dis-Ease Diary, "Endgames," draws a reader up short.

"In the past two weeks, I have allowed myself for what seems like the very first time, the question, "Is this the beginning of the endgame?" What a question to ask, as if the moment of birth is not the beginning. But we aren't conscious at the moment of birth like we are in the bloom of our adulthood, so the question takes on meaning even if it borders on the rhetorical."

Why ask that question now?

"I've been asking the question for three years. But I think I also wrote that, for the last three years, the question as I've asked it, as I've framed it, has seemed academic. You know, kind of like hovering 30,000 feet over it rather than living right in the maelstrom that an endgame means. It's not that I think I'm going to do die tomorrow. I don't. I'm still breathing and I feel pretty good, except I can't move anything," he said. "End games is anticipating well. How are we going to play this out? How do things go in the end? And it's been on my mind a great deal, partly because my hands and arms now are so, just kind of there, and partly because I've lost the neck strength that I've had and partly because even though my breathing remains good, it is diminishing. So, I have some decisions to make there. You know, all that is to say, my body is winding down; my spirit is strong. I expect it to remain strong. I'm not unhappy. I just want to be prepared, and I want to help others to be prepared."

Kramer calls all this a winding down at the speed of ALS.

"I think it's the experience of life," he said. "I have this slow experience of physical form and function, and yet this very rapid experience of time that can be disconcerting. "At the same time, it's also, I think, symbolic of the fact that I think if we're really locating ourselves in the present moment, in this time together, if we're really appreciating that, then the winding down and speeding up really become superfluous. They're not really relevant to that as long as you can stay in the moment. But, there's a lot of tension there and it's hard. It requires discipline."

Still, he feels robbed of what he had thought would be another 30 years, at least, of a healthy life.

"For example, my granddaughter, you know, this beautiful bundle of potential, and oh if I could be there when she graduates high school. And, oh, I want to be there when she gets married and when she has kids. You know, I want to the grandfather that everyone wishes was their grandfather, but that's not going to happen. And, so, it's really easy to fall back into the regret and bitterness of will she know the unconditional love that her grandfather had for her," he said as his voice cracked with emotion. "That's hard, but at the same time, she's my ability to pay it forward. My son is such a good dad, and I don't know where he got that. He didn't get it from me, but, oh, to watch that, to watch him and to my watch my daughter-in-law, and to watch them with her and to think of how loved and how special she must feel through the hard things that are going to come, that will shape her and turn her into the person she will be, that I feel a certain amount of -- well, I feel okay with that. I'm okay with that. I have to trust that I've done what I can do and that it will pay forward."

He writes, "I still have plans ... final words, time spent, memories, music."

What are those plans?

"I think it's about planning to be engaged and I have to be a lot more planful about that," Kramer said. "I have family and I have friends and things that I want to do -- my plan is to stay with it until I can't."

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