Living with ALS, Part IX: Bruce Kramer contemplates the seasonby Cathy Wurzer, Minnesota Public Radio
Editor's note: This is our ninth report following University of St. Thomas professor Bruce Kramer as he copes with life after being diagnosed with ALS, also known as Lou Gehrig's Disease. Interview highlights are below. The audio will be available later today.
HOPKINS, Minn. -- Some of us mark time by major life changes or events. The same is true for Bruce Kramer and his family, who will never forget the moment two years ago this month when he was diagnosed with ALS.
Christmas was especially difficult that year, but this year it feels different.
Kramer's health forced him to step down from his position at St. Thomas a few months ago and now, while his wife, Ev Emerson, is away at work during the day, he has time for quiet contemplation, the company of friends, and the chance to indulge his love of classical Christmas music.
"I've been thinking of the end game because I have to," he says. "This is not something that goes really well if it catches you by surprise and so there are things I just don't want to happen that might require someone else to make a decision I'd rather make myself."
Below are some highlights of Bruce Kramer's conversation with Cathy Wurzer. Click on the audio link to hear the full interview.
On his favorite Christmas music
"I love the music of Christmas. Probably one of the nice things, I'm able to listen to a lot more of it because no one else is around. [One of his favorites is Tomas Luis de Victoria's "O Magnum Mysterium."] The reason I like this particular one, it's very renaissance-y. It starts with a single soprano..."
On life support questions:
"As one's breathing gets worse, then you have to think about breathing support, and the breathing support you can go toward is a ventilator. We have tremendous associations with ventilation. We think of people being brain dead and vegetables and we have all kinds of lovely little ways of characterizing their lives although it is possible to live with a ventilator and be a reasonably happy person. Even though I don't think I'm headed toward a ventilator or even breathing support for quite awhile, it could happen quite easily by aspirating food or just something where the decision will get made for you. I don't want to seem like I'm obsessing about it. I'm not, but these are things I've had to think about. I feel I should think about just for the sake of my family and for myself."
On end of life, or palliative care (from his blog):
"In August when we were there, the questions that I raised were mostly about how will I know that it's time to do something and the answers that I got were sufficiently vague because it's not that easy. It's not like there's a physical measurement and then you say "okay, now we're going to give you a feeding tube" It doesn't work like that. That particular visit was with Dr. Sorenson and what he said was "You know, it's probably more important for you to know what is it you want to do with the rest of your life and what kind of treatment will help you get there " Although palliative care at first is built around pain control, eventually you end up having to talk about how you're going to do end of life."
Bruce Kramer: Living With ALS
• Part I: Music adds solace
• Part II: Turning to Mayo
• Part III: 'The Tell'
• Part IV: Moving house
• Part V: A career reframed
• Part VI: Caregiving stress
• Part VII: The seasons change
• Part VIII: A career in full
• Link: Bruce Kramer's 'Dis Ease' blog
On thoughts about the end of life:
"I have no idea. I know I'm going to die sooner than I thought I was going to die and you know, my second anniversary of my diagnosis, my third anniversary of presentation of symptoms. You know 50% mortality at three years in ALS. I don't think I'm there. I don't feel like I'm dying. Let's say that differently. I don't think I'm dying fast. I do feel like I'm dying. The palliative care is quite important and frankly pain management is quite important. I do have pain. I have pain that is hard to manage. I'm learning and so that is a good thing to be talking with them about."
On savoring the spirit of the season:
"I love to come out and see our tree and the many things we have from all over the world that remind me of special moments. And it's also a time for contemplating beginnings and commencements and it is a time to think about well, what do you want to do with the rest of this time? So, the holiday has been very good in that respect. I've enjoyed it. I have a lot of time alone and I enjoy that time and it's allowed me to come back to God, the universe and everything and I think about that."
On reconciling beginnings and endings:
"You know, I don't see these things as mutually exclusive. My own religious background uses the alpha and the omega...the beginning and the ending...as being one and unified. In my life, I have seen numerous times where the ending of something is the beginning. Where life continues on in a new way. In a direction that is maybe not the direction I would have chosen but once I'm in it, not a direction that I would deny. So. ALS is part of that. The things I have learned through ALS, the knowledge that has been granted to me...and I like to learn...has been remarkable. So I think it is a time of beginning. Even though as I think about beginnings, I also think about endings and those endings have their own beginnings."
Follow Cathy Wurzer on Twitter: http://www.twitter.com/cathywurzer
- Morning Edition, 12/20/2012, 6:45 a.m.