Thursday, June 29, 2017

Kobayashi Maru

            Elisabeth Kubler-Ross in her 1969 book On Death and Dying, lists five emotional stages commonly experienced by terminal patients prior to death, or people who have lost a loved one. I lifted the description below from Wikipedia:

1.     Denial – The first reaction is denial. In this stage individuals believe the diagnosis is somehow mistaken, and cling to a false, preferable reality.
2.     Anger – When the individual recognizes that denial cannot continue, they become frustrated, especially at proximate individuals. Certain psychological responses of a person undergoing this phase would be: "Why me? It's not fair!"; "How can this happen to me?"; "Who is to blame?"; "Why would this happen?".
3.     Bargaining – The third stage involves the hope that the individual can avoid a cause of grief. Usually, the negotiation for an extended life is made in exchange for a reformed lifestyle. People facing less serious trauma can bargain or seek compromise. For instance: "I'd give anything to have him back." Or: "If only he'd come back to life, I'd promise to be a better person!"
4.     Depression – "I'm so sad, why bother with anything?"; "I'm going to die soon, so what's the point?"; "I miss my loved one, why go on?" During the fourth stage, the individual despairs at the recognition of their mortality. In this state, the individual may become silent, refuse visitors and spend much of the time mournful and sullen.
5.     Acceptance – "It's going to be okay."; "I can't fight it; I may as well prepare for it." In this last stage, individuals embrace mortality or inevitable future, or that of a loved one, or other tragic event. People dying may precede the survivors in this state, which typically comes with a calm, retrospective view for the individual, and a stable condition of emotions.

            For the Caregiver for a loved one who is no more terminal than everyone else on the planet, the list is somewhat different. We are not grieving. We are fighting back as best we can, and we are finding ways to enjoy our days while planning for our uncertain future – together.

            And while Kubler-Ross has people moving through the stages in order, I find myself moving fairly quickly back and forth among the stages. “Stages” may not be the best term. Maybe “modalities.”

·      Battling – This is what we are doing. Radiation is over, medication is about to begin, and Tuesday Kim felt like she turned a corner, especially because her appetite returned after two months, with nausea tossed in for the last two weeks. We are studying ways to improve our diet, committing ourselves to regular exercise, drinking more water than we could have imagined several years ago.
·      Denial – This is my default modality. Always has been. I remember when our canoe capsized in Canada and we came very close to drowning, my clear thought as I hit the water was, “This doesn’t happen to me – it happens to other people.” In our current situation, it’s not that I believe or wish that “the diagnosis is somehow mistaken.” It’s just that I refuse to accept the fact that the life I love with Kim will change so radically. “This was not the plan,” I say, “and I’m sticking with the plan.” So we are going to go ahead and build that cottage on Torch Lake.
·      Blame – Find somebody to sue. As if that will make a difference.
·      Denial
·      Touch – For some reason I now feel a need to touch Kim, maybe on her shoulder, her butt, her hair. (Come to think of it, this is not at all new.) I’m more aware of my need now because Kim is in pain, plus her radiation-related nausea, so getting touched by me is not high on her list of priorities. But we are talking about my needs here . . .. We both enjoy, on a good evening, a Lubriderm foot massage. Touching is good.
·      Oblivion – Not complete oblivion, of course – plenty of time for that later. Kim sleeps a lot, which helps. I used to find a degree of oblivion through my evening bourbon, but I’ve cut way back because Kim can’t drink with the painkillers she is on, and I feel bad drinking alone.
·      Self-Reproach – It is natural for me to blame myself when something goes wrong – such as Kim’s cancer – because I am in the habit of giving myself credit when things go well. I have several possibilities swimming in my reservoir of guilt, but I choose not to share them here.
·      Denial
·      Distraction – You know those drug ads on television where they are required to read all the horrible potential side effects? At the same time as they are doing that, the visuals show people enjoying life with no side-effects whatsoever. They make the visuals as appealing as possible to distract you from the frightening language. Well, our oncologist gave us some frightening language about the side effects of the medications he is prescribing. (I did not find any warnings about erections lasting more than four hours.) Immediately after reading that I feel an urge to find a good movie on Netflix.
·      Split-Screen – Speaking of Netflix, I have two movies running in my head. Maybe three. One features images associated with the above side-effects, plus what I see when I google “stage 4 cancer,” both of which Genne’ has wisely told me to stop imagining. On another screen I see us, the battle won, living at our cottage on Torch Lake, visited by family and friends, grandkids and their kids, or just enjoying breakfast as we watch the birds at sunrise. A third screen is looking back with simple appreciation to the good times we have shared.
·      Kobayashi Maru – In one of the Star Trek movies cadets who are training on a simulator are presented with a no-win situation: In order to rescue a ship, Kobayashi Maru, and its crew that is calling for help, they would have to enter enemy space, provoking interstellar war. The cadets do so and their ship is destroyed, along with the one they were going to rescue. When the cadet training on the simulator complains that the situation is impossible, she is told that one cadet, James Kirk, found a solution: reprogram the simulator. This has taught me a valuable life-lesson: When life presents you with a set of unsatisfactory options, redefine the problem in a way that gives you more options.

Thanks in large part to Genne’, whose positive attitude is based as much on her medical knowledge as it is on her love for her mom, we are working on our Kobayashi Maru solution, which Kim defines as “fuck it.” Kim is eating without nausea, and she is starting an exercise regimen that involves climbing stairs instead of using the elevator. She had a pedicure, and her red toenails match her soon-to-be-discarded walker. Tomorrow we buy life jackets for the kayak Scott bought her for her Mother’s Day.


  1. I love Kim's comment to the Kobayashi Maru solution. My kind of comment, along with "that's fucking ridiculous!" Love it that you are going kayaking and following your dream of building your cottage.

  2. Everything about your post is perfect- perfectly honest, perfectly easy to relate to, perfectly funny and sad at once, and perfectly human. I love you guys! And I love the 'fuck it' approach... a lot.