Living with ALS Part VII: The seasons changeby Cathy Wurzer, Minnesota Public Radio
ST. PAUL, Minn. — Editor's note: This is our seventh report following 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 State Fair starts later this week. Many schools begin class right after Labor Day. Both events mark the waning days of summer in Minnesota. They also mark a year of change in the life of Bruce Kramer and his journey with ALS.
This time last year, Kramer and his wife had just returned from a trip to Thailand. When Morning Edition host Cathy Wurzer checked in with Kramer, he said he'd noticed that this summer has been different from last, and marked by a series of changes brought on by the incurable disease.
"Last summer we did what I secretly kept saying to myself was my farewell tour of Thailand and Bali. And we had a great time. We were gone for three weeks. At the time, I was still on a cane. It was very tiring to travel but we had a wonderful time," he said.
Kramer's legs no longer serve him. Seemingly simple tasks have become almost impossible for him to complete without help.
"This summer I couldn't have done such a trip," he said.
"Where it was nice to have a little help getting dressed, now it is absolutely imperative. I have somebody helping me get dressed. I need some help in shower. I need help getting into bed," he says. "Eating is fine. But getting the food to my face with my hands, that's a whole other issue."
It's exhausting: "I just have to stop and rest, and then pick it up again, and stop and rest, and pick it up again. I'm probably coming to the point where I'm going to need help eating too."
It also feels like part of noticeable progression: "I feel like I've sped up a bit. My progress has sped up over the summer. It may be that that these things are iterative and they keep piling up on themselves and suddenly you attain critical mass. Then you can't do it. So, it may be that the critical mass happened in the last three or four weeks."
Specialists at the Mayo Clinic in Rochester will measure and note the changes Kramer is experiencing during his two-day visit.
"Last time I went, I had a very short list. The time before that, I didn't really have a list. But this time I have a pretty long list. And so I think I'm coming up to some, some pretty major life changes here."
More interview highlights:
Bruce Kramer: At some point this year I have to stop working. And the work is great. The logistics are just really hard and again, it's a question of when you're putting in as much energy as I am just to get food to my face and that's energy you don't have for the work. And that's not fair to them or to me."
Cathy Wurzer: You've been blogging, obviously, how have you been working your way through some of the emotions that have cropped up because of the changes?
Kramer: You know, when I go back and look at my blog from the last two months, it feels to me like it's up and down, up and down. One week I'm OK. I'm OK with where I am. And the next week I just need to complain. The fact is that even the blogging, because it's harder to write, even the blogging has its own frustration factor that I have to work through. A year ago, I would have told you that I really slowed down. In fact, I think I did tell you I really slowed down, and I had. I continue to slow down. I feel like a T.S. Eliot moment, you know? Not with a bang, but a whimper. And so the winding down part, it's not a bad thing. It feels alright to me. But it makes me a lot more reflective, a lot more introspective a lot more introverted; probably a lot more appreciative of being with people who have that energy and zest for life. I have to kind of live vicariously through them now. So it's really different.
Wurzer: There's a post you wrote called The Snake -- shedding one skin. Is that what you're referring to?
Kramer: It really is. You know, one of the ways that I find myself handling loss -- and I've done this since the diagnosis - [is to] frame it a different way, put a different picture on it. And so the idea of shedding one's skin -- a snake does that for growth, for the ability to continue to live."
(Reading from his blog, "The Dis-Ease Diary"): Dis-Eease sheds capacity, and while that shedding seems far too easy, it is what frames each evolving iteration of loss that I now experience. Since my first physical symptom, I have come to realize that from time to time, I must completely reboot, shedding the old concepts of what it means to have ALS like the old skin they have become, and embrace the new losses as progress, usually with some physical struggle and emotional upheaval thrown in. ALS has changed me. Dis ease has depleted me. I can mourn each loss, but I must not allow myself to become comfortable on the new plateau where it lands me for that is not the way of life we are granted.
Wurzer: You may be experiencing physical loss that you wrote about and you're talking about, but are you experiencing, as you work your way through this, some form of spiritual growth? Because when one shed's one's skin, you can look at it a number of different ways. You can look at it as loss, but you can look at it as growth, too?
Kramer: You know, there isn't a religious narrative that exists that doesn't have loss as the primary factor for growth. We have to lose to grow. We have to experience discomfort and pain and a little bit of something that bugs us to do something about it. The ALS just compacts it, compresses it. Down you are, and um, so then you find out who you are. And then you find out what you are. The body is just one part of it. There's this whole other area that we're all given more or less, if we want to access it. A friend of mine came over last week to eat burgers and listen to music, which is really fun. And we were talking, and he asked me if I meditate and I said, 'yes.' And he said, 'Well, what do you meditate on?' Well, I look inward and there's this sound. That doesn't surprise me. I'm a musician. It doesn't surprise me that there's a sound that takes me to a different place. Others have told me about light and others have told me about feeling but for me it's a sound.
Wurzer: Can you describe that sound at all? Tone? Feel the sound?
Kramer: Well, yes, I feel it. Yes. It's subsonic, supersonic, discernible. But I can't tell you what the pitch is. How's that?
Kramer: It's a place of comfort. It's a place I can now -- three, four, five times a day -- turn inward to this spot, even if it's for a few minutes. And it just kind of gets me back, centered. And then, OK, so you can't move your legs. OK, so your left hand barely has a paragraph of typing in it. OK, your voice feels husky. OK, you're just ending up using all kinds of contraptions and creating post-Olympic programs in order to get a shower. OK. OK. It's alright.
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: Managing the stress of care
• Link: 'Dis Ease' blog
- Morning Edition, 08/22/2012, 6:44 a.m.