Our first challenge was Karen’s hyperactivity. She was unable to stay still for even a second. She could sleep only a few hours at night and then thrashed about so much, she put holes in the wall and often fell out of bed. On the trampoline she would lie on her back rocking for hours, exhausted but unable to stop moving.
Before Karen’s illness, Jeanne had been sitting zazen sporadically for nearly a year and had attended one sesshin during a visit to Toronto, Canada. Shayne, ever curious, had just started sitting a little in order to understand what it was about. With so little sleep, so much stress, and all that hyperactivity, we both felt the need to sit more. The more we sat, the more we realized that we had to sit every morning in order to make it through the day.
During that first year Karen also developed temporal lobe epilepsy and difficult behaviors related to scarring from the brain injury. When she was upset, which was often, she would spit, make animal noises, kick, hit anyone who came near her, and try to destroy anything in her path. Trying to maintain our relationship and raise an active toddler in the midst of this chaos provided still more challenges.
Morning meditation helped us deal with some of the uncertainty caused by Karen’s extreme mood swings. In order to preserve this one island of stillness in our day, we put a sign under the time on her alarm clock with 6:00 in bold numbers. When the numbers matched, she could come out of her bedroom and not a minute sooner! Yet as her footsteps sounded down the hallway, we had to work with expectation and find ways of letting go. How could we deal with what was about to present itself—sweetness or violence—if we carried over anger and resentment from yesterday’s episode?
It took several months to test, diagnose, and medicate Karen for temporal lobe epilepsy. This was a particularly difficult time for the whole family. The new medication turned Karen into a zombie. A hyperactive zombie. But at least there was a reduction in her violent bizarre behaviors and the seizures stopped.
Throughout this time a burning question had been emerging. Here was this child whom we had known so well and, although she had changed a great deal in her seven years, we had a deep sense of who she was. Yet that person was no longer present in Karen’s body: A virus had changed her into one thing, a lump of scar tissue into another. Now a couple of orange pills was turning her into something else. So who was Karen, really? Nothing seemed real anymore.
Jeanne attended sesshin in Nelson and told Daido Roshi our story. One tear slowly trickled down his cheek; she felt the warmth of his compassion. He told the story of how his son, at five, had suffered a similar fate with a brain tumor. Jeanne started to cry; three days later, she stopped crying. She had found a little peace and a lot of strength, but upon her return, Shayne was on the verge of collapse. He sighed and went back to work.
In her heavily doped state, Karen was unable to respond emotionally to anything or anybody, yet she continued to demand high levels of care and attention. Various Zen sayings tell us that true giving does not have an expectation of return. This made sense to us. Up until then we had understood it on a very superficial level. Now, for the first time in both our lives, we were in a situation where we had to give continuously and there was absolutely no return, no response, no sign of improvement to spur us on. Even a demanding newborn baby will give a little gurgle or a smile. Karen was a black hole into which you threw everything you had and got nothing back. Now and again, between bouts of despair and wanting to run away, we saw this as a great opportunity to practice.