The challenge of living well with ALS, but also accepting the inevitable

Hands
Bruce Kramer's fingers are fitted with plastic rings that sit at his knuckles and help keep his fingers straight Tuesday, Dec. 3, 2013 at St. Marys Hospital, which is part of the Mayo Clinic, in Rochester.
Jennifer Simonson / MPR News file

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.

Bruce Kramer was diagnosed with the incurable disease ALS in 2010. Since then, he's been involved in a couple of drug trials. And about two months ago, Mayo Clinic doctors implanted a device in his diaphragm that has improved his breathing.

"My breathing is better but the ALS progresses. There is nothing I can do about that. I know that. But I feel better."

Kramer says the mechanism, called a diaphragmatic pacing system, or DPS, says that it helped him feel much better. But after that recent story, a listener asked whether the 58-year-old former college dean is denying his inevitable death by using such a device.

"I beg to differ," Kramer says. "I am not in denial that I'm dying. I am dying. My breathing is better but the ALS progresses. There is nothing I can do about that. I know that. But I feel better. And so what this is, in a way, is a palliative rather than a curative. You know, we could say the same thing about insulin, we could say the same thing about knee surgery. You know, why are you getting knee surgery, your knees are going to go anyway. So, why not? Just let 'em go!"

Neither does Kramer see his use of a machine that helps him breather better as a contradiction to the idea that he has accepted his fate. "I don't see it as a contradiction at all. What I see is that it is a treatment available to me. It is a treatment that results in a higher quality of life. It is worth the effort -- the reasonable effort to do it -- and I think that is a good metric to use when looking at any treatment," he says. "The breathing support that is available to me at this point is [making the machine's sound], 'bipap, and bipap,' it's a passive system. It isn't invasive but it requires putting a mask on your face and it really puts the air down your throat."

"For those of us who have the ability, or are in the right time frame with ALS to participate, if we don't, who's going to?"

He says he also approaches his involvement in drug trials with the same philosophy -- and an added sense of obligation.

"Let's be clear here. I want no one to make sure no one misunderstands my motivations with drug trials," he says. "The population with ALS is so small that for those of us who have the ability, or are in the right time frame with ALS to participate, if we don't, who's going to? And so I feel a bit of a responsibility there. The DPS is along those lines. The DPS is the first thing we've had in a long time -- and remember we only have one drug -- it's the first thing we've had in a long time where we think, 'You know, this might actually help a person feel better.' And clearly my response to it is that, 'I feel better.'"

At what point does all this effort and pain of living with a modicum of dignity outweigh the value of the love one is able to give and receive from friends and family?

"That's the life question. That's not an ALS question. At what point do we ask ourselves is what it requires for me to remain in this life worth the energy that I'm expending and I think for most of us it is hard for us to even imagine asking that question. The difference is ALS puts that question front and center."

Kramer says the same question could also be asked by other struggling with a terminal illness, but who feel alone in their plight.

"The fact is, what makes this life worthwhile is that you have some shared engagement in some way shape or form, and that is the part that breaks my heart with my [terminally ill] brothers and sisters: When they feel that they are all alone. When the only choice they have is to be placed in a nursing facility and there's no one who really knows them. No one subjectively gets them. They are only objects of care," he says. "You're something to have your clothing changed, to be fed, to be showered. You're not that person who has that rich and complex interaction with the world and life history that I think is probably the key to whether this is or is not worth it."

"What happens when you can't eat through your mouth? All of these things are what I've called in the past, 'paper cuts.' Eventually there's one too many."

Does the equation change as ALS takes away the ability to talk?

"That's a good question and I don't know the answer to that until I'm there," Kramer says. "You could ask the question, 'What happens when you can't eat through your mouth?' All of these things are what I've called in the past, 'paper cuts.' Eventually there's one too many and at that point I'll be honest about it, I'm done. I just don't have the energy. But right now, I do." Would he let nature take its course?

"Ha! We do not live in Oregon and I'm really not interested in assisted suicide. Will I let nature take it's course? Actually it isn't a matter of letting it. Nature is taking it's course and so there are things that can be done," he says. "Again, if I decide to go with no breathing support, eventually the CO2 buildup would kill me. So, it's just a matter of time."

"Right now I feel it is worth it. I have this family that is, they just 'get' me. I have friends that 'get' me. I also feel I 'get' them. I can still be part of their lives. I'm helpful. I'm still what a friend is. If we put more energy into that, and less energy into the kinds of things that we keep mistaking as success, it seems to me that this world would be a much better place and we wouldn't be asking questions like, 'Isn't he just denying death?' Who cares? What is really important is, 'Are you denying life?' And life is about sharing with others."

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