After 4 years of ALS, Kramer senses 'tipping point'

Bruce Kramer
Bruce Kramer, who has ALS, speaks with Morning Edition host Cathy Wurzer, Sept. 4, 2014 at Kramer's home in Hopkins.
Jennifer Simonson | MPR News 2014

Editor's note: This is 34th in a series of conversations between Bruce Kramer and Cathy Wurzer. The 35th will appear Thursday.

As Bruce Kramer adds up the challenges and benefits of living with amyotrophic lateral sclerosis, or ALS, he realizes he may be nearing a tipping point.

"I think all of us live a balance between our love for life and when life becomes too much for us," he said recently.

The former college dean, teacher and choir director was diagnosed with ALS in December 2010. He has lost the use of his limbs. He tires easily. His breathing is supported by an external ventilator, a BiPAP machine, that allows conversation despite the bursts of air blown into his nostrils from an attached tube.

"This balance, which I have been doing for the last four years, has suddenly shown how it might tip," Kramer said. "It's not to say I don't want to live. I love my life. But it is to say that the challenges of ALS at a certain point become so much that the question of quality of your life is a serious consideration."

"Quality of life" is a relative term.

"Well, it's obviously not that I'm exercising every day," he said. "I think that for now, I still have the ability, the capability, of enjoying my friends and family ... and yet, if my physical or mental capacities were to be so compromised that I could not enjoy that, I could not have the sense of engagement with the people that I love ... my judgment of the quality would be much harsher than it is now, even though I'm paralyzed from the neck down."

Kramer's wife, Ev Emerson, said her husband's increasing pain is becoming a challenge.

"Nighttime is the hardest," she said. "I think during the day, Bruce stays quite busy and engaged with projects and people. But at night, when there's nothing to take his mind off pain ... Most of the pain is in joints, in his back, in his spine, and nights are difficult. And we try to do as best we can with pain medications, but sometimes that isn't enough."

Kramer agreed. "Nighttime, everyone's asleep, including the cats, and I am not able to move. I am not able to shift, not able to do the things that most of us do to just get a little more comfortable. So what for most people would be a minor irritation, over time, grows into a very painful situation. And at those times, I would rate the pain up in the 8-9-10 area." So is pain the reason Kramer feels he's near a tipping point?

"I don't think that's really going to be the tipping point for me," he said. "I think the tipping point for me will have something to do with ... feeling so powerless and so unable to engage with the life that I love.'

"The fact that my breathing is getting worse is one factor that compromises my life," he said.

As his breathing declines, his ability to speak may suffer.

"My voice is my one way of having any say about the environment and how things happen to me," he said. "I think what I'm talking about ... is that sense of engagement, that sense of being a part of living and growing in which I can see that my life will continue to improve and get better. Which I know sounds a little funny, from a person with advanced ALS."

Even if pain isn't the tipping point for Kramer, it may be one for Emerson.

"I think the worst thing you can do is to see somebody you love suffer," she said. "And as much as I want Bruce with me, I don't want to see that. I don't think I could bear to see unrelenting suffering. So as much as I hate to admit it, I would support his decision if he decides it's too much."

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