I understood being the perfect caregiver was not necessary, or even possible. Nor was it a role I had ever come close to fulfilling. I accepted that being caring, alert, and considerate was more than sufficient. I had also begun to accept the long-term reality that Deloris would probably never return to her pre-stroke self. In order to care for her over this long and indeterminate time, I had to take care of myself. She and I were striving to develop a new normal, a life we could share and enjoy given the limitations imposed by her condition and my responsibilities.
As months became years, Deloris’s condition progressed, plateaued, at times regressed, and progressed some more. As the Ritalin took effect, she became increasingly more capable of independent action. This allowed me to suggest outings—dinners with friends, a day trip to the mountains, plays at our community theater, walks in the neighborhood. Accepting reality, developing a new normal, feeling grateful for my life even with all its challenges, and, above all, being able to laugh at this life’s absurdities gave me strength to keep on keeping on.
When I felt centered, I found caregiving to be a spiritual practice. One of my Buddhist teachers described a person’s being mindful of whatever she or he was doing and feeling gratitude for the opportunity it presented—even in so mundane a task as washing dishes—as a spiritual practice. He called it Kitchen Yoga. When I could care for Deloris with this consciousness and a feeling of gratitude, I felt engaged in the practice of Kitchen Yoga, although, given Deloris’s bladder condition, I renamed it Bathroom Yoga. With this mindset, I was nourished by the depth developing in my own compassion and spirituality. I realized how incredibly blessed our lives were and was grateful for it.
In a workshop entitled “Intentional Spirituality,” Rabbi Ted Falcon, our spiritual and religious teacher, said the only way to remove obstacles in one’s personal and spiritual evolution is to acknowledge, accept, and feel gratitude for them. Slowly, I was finding the inherent truth in this statement.
I have to admit, however, that as much I valued such moments of mindfulness, they were most often recognized after-the-fact, when I was journaling. In the moment, I was too exhausted by the seemingly endless chores—the necessities that kept the house running—to engage in any metaphysical musings on my life.
One morning, Deloris asked me, “What would make you happy?”
Something in her tone of voice and the way she looked at me when she asked the question brought me up short. When I was engaged in household work, she would often ask if she could help. This was the first time I could remember her posing her inquiry in this more general form. I knew it was a serious question, one grounded in her love. I wanted to respond at the same level of seriousness, but I was caught off guard. I said, “I don’t know. Let me think about it. I want to give you the answer the question deserves.” She nodded.
The question triggered a cascade of thought. I had no need and no real desire for material objects. New toys were not the answer. The happiness such objects engender is short-lived and superficial. Of course, Deloris’s getting back to her former self would bring me a lot of joy, but that would not have been a useful response, as its actualization was out of our control. The question was what would bring me happiness in our life now? Deloris deserved an answer to her question, and I wanted to give one to her.
That I couldn’t immediately articulate what made me happy didn’t mean I was never happy or was always sad. I wasn’t. I usually felt less than whole, but this was more often a passive and reactive experience. Happiness was not a place I had recently dwelt except for very short periods of time—visits, really. Trying to answer Deloris’s question triggered an introspection that allowed feelings of loss and the permanent change in my life to surface. Finally, it occurred to me that what mattered most to me were interactions with my wife on a day-by-day basis. The small things.
A few days later, while we were eating breakfast, I said, “Hon, do you remember asking me what would make me happy?”
“Sure,” she answered.
“Well, I know the answer. What would make me really happy is for you to cook me a meal, any meal, by yourself. I would be willing to shop for ingredients and help you in the prep, but you would do all the planning and cooking. Seeing you back in the kitchen, and then having the joy of eating what you cooked, would make me happy.”
Deloris smiled the crooked, imperfect smile she had since the stroke had altered her ability to control facial muscles. “Me, too.”
As she spoke, I glanced out the window and saw the sun breaking through the clouds for the first time in more than a week. That also made me happy.
Once again, I realized how grateful I was for Deloris and for our life together. The key to caring for her brain-injured husband, Alix Kate Shulman writes in her memoir, is amor fati, to love one’s fate. My fate with Deloris, our fate together, was pretty damned good. We were blessed in ways we had barely begun to appreciate.