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.
As we get older, there's no denying that our bodies change. Photographs of ourselves can be startling, sometimes unnerving reminders of those changes.
This summer, two photographs had a transformative effect on Bruce Kramer, who is living with ALS, also known as Lou Gehrig's Disease. He talks about the those photographs, and some new technology called a head array that he's using to help with his mobility and writing, in the edited transcript below. First, the technology:
BRUCE KRAMER: I've already taken out one door here in the condo with it. ... It's a little bit funny, because to go forward or to go backward, you press your head back. Right and left are just turning your head and that's pretty intuitive, but going forward you press your head back so if I'm coming up to something and I think I should slow down I intuitively back up, but instead that speeds me up and BOOM, right into the door! So I'm not taking this into crowds of people yet.
CATHY WURZER: It's interesting to see how technology has helped you. You're dealing with the power chair with the head array but also I know you're writing the blog and also other correspondence using voice recognition software.
KRAMER: Right. My whole life, I thought with my fingers. If I really wanted to know how I thought about something, I'd just start twiddling the keyboard and eventually I'd look up and there was something there that kind of made sense to me. It's taken me awhile to make the transition. But, yes, now I use the voice recognition software. I'm actually beginning to use it to control the computer itself. You can tell it to mouse up, mouse down, double click, things like that, and that actually has saved me some energy and allowed me to continue to work even when I'm really, really tired.
I'm practicing with an eye gaze system which would speak for me if I lose my voice and that's hard. That's pretty hard stuff but I'm practicing. It's kind of like the head array, I'm getting better. You don't want to get this stuff when you need it, you want get it before you do.
WURZER: Let's talk about the blog. There was an entry that caught my attention: Picture Perfect. You and your lovely wife Ev were on a short vacation this summer to Chicago and you talked in the blog about a picture that even caught you off guard. Can you explain?
KRAMER: When I turned 50, I realized suddenly that the guy that was staring back at me wasn't the guy I thought looked like that and I think all of us carry a little bit of vanity, a little narcissism about how we look, but in this particular instance I was downloading pictures from our little jaunt out to Chicago and one of them came up and I looked at it and thought "who's that guy in the wheelchair?" And I suddenly realized it was me and it was like being kicked. It was such a shock to me because I had what I kind of termed in my own head as "the ALS look." And why wouldn't I? I have ALS. But the fact that it was there, it was so undeniably there.
WURZER: What's the ALS look?
KRAMER: Well, first of all, you're leaned back in the chair because you can't hold your body up. And probably the muscles around your spine are so atrophied that you're kind of crooked. You're feet and hands have obviously been placed by someone else because you can't move them. And then, invariably in the pictures of people with ALS, there is somebody, a loved one or family and they are all bending down to be with you. Now, nothing wrong with these pictures but they all tend to reflect that look. ... I tell you what, in my head, I'm still the guy who's walking down the hall. I'm still the guy who walks in and "takes" a room.
WURZER: It was so jarring he had to write about it.
KRAMER: It took me back to almost more first days after diagnosis as I was projecting forward and thinking what's going to happen to me, and now it has happened and is still happening. ... I have used the term circling back, but I also think of it as spiraling because you don't circle back to the same point, but down beneath it and it's close to that same point, but it's a little bit deeper. And so, I found myself back in that space and I had to process it.
WURZER: How do you see yourself as you live with ALS?
KRAMER: That's a really good question. Um, I'm getting used to the idea that this person is.. and this wheel chair are pretty much one in the same, but I don't see it. And, I feel like myself. ... All of us project a physical presence wherever we go, and I realize that my physical projection as it diminishes, the trick here is not to allow my personhood, my sense of who I am to also diminish. WURZER: Another [photograph], more than a month later, led to a much clearer picture of his whole personhood. He's seen holding his new granddaughter, Hypatia.
KRAMER: I am just absolutely gaga, smitten, totally in love. ... I just never quite experienced anything like this. ... So, I ended the blog, with a picture of me holding my granddaughter Hypatia, and reinterpreting the first picture as a picture of not a person with ALS, defined by ALS, but rather a person waiting for this pure love that is coming and has arrived. And, I think that is transformative.
WURZER: Have you noticed as the summer has gone on that you're doing more reinterpretation? Is it almost a way, as you're talking about spiraling and getting in and under and deeper on various issues that come up, that you're doing more reinterpretation?
KRAMER: I think that's a good way to think about it. When we interpret an event in a singular way, then we only see that event for its facade. We've created just a skin deep way of looking at it, but if we can get underneath it, and this is what I was trying to do in the blog, was to get underneath this picture. ... We project a representation that we want others to see. Um, sometimes it's truthful.
WURZER: Or sometimes it's a mask.
KRAMER: Exactly. And so, the thing about ALS is that it doesn't make you honest, but it's so starkly offers you the choice of either being honest or not. And if you choose to be honest with it then, yes, all of that bad stuff is there, but it's like refining a precious metal in a way. It burns away all of the stuff that doesn't matter if you're honest, and leaves you with things that are pure and primal and humanly possible. And, I would say that the birth of a granddaughter is just pure love.