An ALS patient describes breaking the news with 'The Tell'
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's legs are getting progressively weaker and he needs a motorized wheelchair and custom mobility van to get around.
"I just feel so weak and I feel like that all the time in my arms and legs. My left arm and my legs," he told MPR's Cathy Wurzer. "The rest of me feels pretty good."
Here's part of the conversation:
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CATHY WURZER: "What do your doctors say about the weakness that has overtaken your legs since we last talked?"
BRUCE KRAMER: "I have the walker right up at the doorway. I pull the wheelchair up to the walker. I get up to the walker and I sort of, I've got grab bars all over the place and somehow or another I manage to go through another day of an adventure in the bathroom and that's the only walking I do. It's about two to three steps with a walker."
WURZER: "You're blogging very eloquently about your journey on the Internet and you're calling it the Dis Ease Diary. You're deliberate about using the word in that manner, Bruce. Why is that?"
KRAMER: "I guess what I realize is that I am basically heading on a journey faster than the rest of ya'll and that journey is a journey of taking what is generally easy for us, and something gets in the way of that and we have to find a way around it and it gets harder and harder and harder and eventually we can't. Eventually we don't. Eventually we die.
"And then I realized that it's not just physical, that everyone carries some form of disease in some way, shape or form. If you've had a friend who's marriage has blown up or your own marriage has blown up. Relationships can be a source of disease. Your kids can be a source of disease. [Even] your parents."
WURZER: "I want to take you back to one of the blog entries called, "The Tell." When a person gets a disease they have to obviously tell friends and neighbors and colleagues and family members, and you've constructed what you call The Tell. What is that for you?"
KRAMER: "What I came to realize very quickly, by the second day after my diagnosis, was that even though I knew it was true, others had to deny it. I remember talking to my brother and his very first reaction was, 'You can fight this, you can beat this. I know you. I know who you are. Don't give up on me. You can do this.' And I was sitting there thinking to myself, if I thought I had a bat's chance, I would do anything I could. And I will.
"But I don't think I'm going to beat this. It's really going to be about how I handle it. I need to hear his denial and then his anger and we talked a couple of days later and he had moved to another space, but it made me realize this process isn't about me. I think that when we see people who have a disability it's really uncomfortable for us. It's not a pleasant thing. And it's not something that we want to [do] ... 'Gosh, I just want to hang around someone who is dying.' Most of us don't want to do that. So The Tell became more about me mustering the energy to remain engaged with where you are. That's a lot of work."
Kramer says he had to decide what to say when people asked about his health, especially when he was using a cane. If someone asked if he had injured a leg, he had to make a quick mental calculation: Did he say "yes," or tell them instead he has ALS and watch the shock, disbelief or embarrassment on the part of the person asking. That's the point of The Tell. The disease is a shared experience, even if only one person actually lives with the disease; telling someone he has ALS means that they have been brought into his reality, if only for a moment.
KRAMER: "I go back to my brother. He was the one who actually helped me focus this when he said, 'You can fight this,' and I realized that if I were fighting with this, it would be fighting with myself. This has become a part of me. This is who I am now. It doesn't define me and that's the piece that's really hard, I think, for humans. We tend to look at people. We don't put them 'person first.' We don't say, 'A person with disability.' We say, 'A disabled person.'
"Well, if you define a person that way, then their disability comes first and their person hood is an after thought. And that piece of all of this, that sense that we're all temporarily able bodied. We're all facing some form of disability in some way, shape or form in our lives. We just don't know it yet. Or we do know it and we carry a fear that it defines us.
"So then I started thinking to myself, well, probably the greatest thing I have learned that I could give back is that it doesn't have to define us. We are who we are and then we are who we are with the condition that we have. So, rather than fighting it, own it. It's just a part of you."
As if to prove the point, Kramer motors into his new van, maneuvers into the driver's seat.
"I grab hold, and that's it," he said. "I lift my legs up because I can't do it with my legs, and then forward we go."
You can read all the stories in this series by clicking here.