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.
If you knew you were dying how would you spend the time you have left?
One of this year's best selling books was a memoir written by a former Palm Beach Florida newspaper reporter, Susan Spencer-Wendel who was faced with that same question in the summer of 2011. She was 44 years old, the mother of three young children, when she was diagnosed with ALS, a degenerative, ultimately fatal neurological illness. Her book, "Until I Say Goodbye," has sparked a lot of media attention.
Spencer-Wendel spent a year, shortly after being diagnosed, traveling to far off places, creating scrapbooks, seeing her teenage daughter try on wedding gowns doing things to create future memories for her family and friends after she's gone. She typed her 89,000-word book in less than four months using only her right thumb. Her other fingers were useless. Countless media organizations picked up her story, including People magazine and National Public Radio's Weekend Edition program.
Bruce Kramer, of Minneapolis, has read Spencer-Wendel's book and wrote about it in his blog, the "Dis-Ease Diary," where he traces his own journey with ALS.
Spencer-Wendel has decided to kill herself also, albeit in her own way. She does this through a year of "living joyfully," rejecting all medical treatment and, if she is to be believed, any willingness to help others through participation in trials or other such things. Her manner of suicide is not a gun or hanging or overdose or the other usual suspects. Instead, she accomplishes a hastened death through extended travel to see among other things the northern lights, Budapest, her favorite beaches, and the island of Cyprus in search of her birth family (she was adopted as a baby). Sometimes, she travels with her family but mostly without, clearly in tune with her own needs to make meaningful memories before she dies.
"I agonized over this one," he said of the post. "I agonized because I don't want you to see what I'm saying as a criticism of the decisions that Susan Spencer-Wendel has made. I wouldn't do it that way myself. She did it this way. She's pretty adamant about it."
THE RIGHT KIND OF 'BUCKET LIST'
Kramer said he wanted to address one aspect of the book that troubled him.
"The fact is that there's a certain denial of ALS, a denial of the disability that comes with ALS," Kramer said. "Even as she writes about the things that are going south in her body, she goes off and does these wonderful trips, and she's making memories for her kids, her family. But many of those trips are not with her kids and family, so I guess, again, that's her decision. It's not the way I would do it."
Even though Kramer jumped out of an airplane, skydiving, not once but twice, and went back to Thailand and Bali, places he loves, as part of his ALS "bucket list," he said he's not a pot calling kettle black.
"The bucket list at the expense of everything else is tragic. It's a missed opportunity. And so yes, I went to Korea. Four months off of diagnosis. I went to see my kids. I jumped out of a plane. But even there ... those were things that for me, they were helpful to me to continue to stay engaged. If we can try to stay engaged, there's a lot of living to do," he said.
Kramer isn't surprised by the way Spencer-Wendel's story is covered by the media, he's disappointed at a storyline that reinforces what he thinks is a view many people have -- that life with a disability caused by illness like ALS is a life not worth living. He also worries that stories like Spencer-Wendel's reinforce an all-encompassing focus on the dying person and disregards the effects on family and friends.
"We give her a hall pass. We give her. You know, 'You've got ALS, go for it, do whatever you like, just get out there and live your life and check off your bucket list.'" And the idea that we could just write it off, or you go and don't worry about any responsibility, and don't worry about what it does to everybody else. That's the idea that I think that's very ableistic."
Kramer characterized that "ableistic" point of view as, "That's the only choice you've got." But he added, "I'm still writing, even though I can't write with my hands. I am still finding ways to engage with this life, and the message I would have is, you are challenged further than you ever thought you could go by something like ALS, but the fact of the matter is that you're still alive, you're still human and you can still have a good life. But you have to care about other people. You have to care about other things besides yourself."
'ONE-NESS' RATHER THAN 'OTHERNESS'
"Let me be really clear about something here. When we talk about disability, when we read a book like Susan Spencer-Wendel's, there's almost a voyeurism that goes along with it," Kramer said. "We are outsiders looking in. It's about the other. It's a story about someone who isn't us. You see these things in news accounts, the last news story of the night."
And what viewers see on these television news reports - "the young man with Down Syndrome who's elected to be the prom king, which is a wonderful thing" -- is a report about othernewss.
"Other people's children have Down Syndrome, other people's children have autism, other people get ALS other people are in bad accidents. Not me. I don't have to put myself around that," Kramer said of the way viewers may take in stories like that.
"What I would argue for instead is embracing this disease, the fact that we all carry, we all are aware in some way, shape or form, of this something that's "other" there that's going to make our lives much more challenging. And it's really what unites us. And why couldn't we be pouring our resources into that oneness of humanity, rather than that otherness of humanity. It's that perspective that I'm trying to bring about. It's the perspective of true empathy," Kramer said.
"Not, 'I feel sorry for you, you poor person.' No. It's empathy. You're a human being and you're doing the best you can and I am a human being and I'm doing the best I can and no matter what, we have that in common. These kinds of super-cripple stories that get told, they get told with otherness, rather than one-ness. If we ever figure that one out, I think the world will be a much better place."