Writer Karen Speerstra was diagnosed with ovarian cancer in 2003 and entered hospice care in 2013. What follows is a selection from her hospice journal, which appears in her final work, The Divine Art of Dying, out from Divine Arts in September.
Lately, I’ve been thinking a lot about caterpillars. And how they become butterflies. I chuckle at the New Yorker cartoon of two caterpillars looking up at an airborne butterfly and one says, “They’ll never get me up in one of those!” There’s a mystery about this fuzzy worm inside a chrysalis that holds the potential of flying. What a paradox! I’ve read that the caterpillar completely disappears, except for a few cells that are called imaginal cells. Imagine!
A paradox refers to two statements that apparently contradict each other but are ultimately true. I’m living on such a teeter-totter now. Sometimes I go up, sometimes I go down. Back and forth. I remember how G. K. Chesterton painted paradox: a truth standing on its head waving its legs to attract attention. I’m living now in layers of multiple meanings. Time is everything; time is nothing. Sometimes I feel as if I’m connected to everyone on this planet. At other times I feel all alone. I know that para means “beside” and dox means “opinion.” I am of the opinion that things are right next to me, yet far away. Paradox knows every side of my story. All those waving feet make me dizzy.
Death/birth. Ending/beginning. Alone/together. Strength/weakness. Powerless/empowered. Active/passive. Tears/laughter. Anger/acceptance. Blindness/insight. Sweet/sour. Both/and. Or what if I’m suspended in threeness? Black, white, and gray? Or fourness? Denial, acceptance, avoidance, assent?
I echo Alice in Through the Looking Glass. “I can’t believe that,” she said to the Queen. In a pitying tone, the Queen replied, “Try again: draw a long breath and shut your eyes.” Alice laughed. “There’s no use trying,” Alice replied. “One can scarcely believe impossible things.” “I daresay, you haven’t had much practice,” said the Queen.
I daresay I haven’t had much practice at any of this!
On New Year’s Eve after I had already made my decision to stop chemotherapy, we had dinner with friends. After dessert, one of them said, “So, what does this coming year look like for you?”
I felt the question deserved a direct, transparent, and real answer. Taking a sip of water, I replied, “Well, since I decided to stop taking further treatment, I’ll be entering hospice care soon. So I think it’s likely I may not see this year through to the end.” Silence. I’ve experienced such thundering silence with others since that New Year’s Eve conversation when I tell people I’m now in hospice care. You can see their eyes click up into their heads as they begin to calculate the weeks and months I might have left. Some actually ask me, “How long will you have?” Language leaves them, just as language leaves me, too, with only a wide swath of confusion behind.
Word sounds come from our breath and the vibrations we create. Regardless of where they’re born, babies blow milky breath-bubbles, and they all begin by saying “ahhh.” Soon, like little buddhas, they add mystical consonants: “Ohmmmm” and, of course, “Mamamamama.” Words carry ours stories and key up our songs. Old words, such as logos, scratched onto parchments tell of creation, the first and most sacred utterance. Words can be wonderful tools, as are symbols, to express and clarify what we’re thinking. They can also be thin, weak, and useless. Like the question: “How long do you have?” Which words shall I use now to talk about what’s happening to me?
When I say “death” it’s harder to come up with a concrete image than if I say “car,” for instance. With “car,” my mind immediately goes to “red Subaru.” But “death”? What’s that color? What form does it take? When I check my Roget’s Thesaurus for help, I find words such as: Decrease. Terminal. Deterioration. Extinguishing. Unhealthy. Receding. I want to spend what time I have left writing a new Hospice Thesaurus filled with words for dying that sound more like: Hope. Joy. Increase. Vitality. Fulfilling. Ongoing. Paradoxical. Powerful. Eager. Energetic. Whole. All feelings are true.
In talking to my husband, now I find myself using “you” more than “we” in conversations about our future. “You’ll enjoy visiting Herbert and Phyllis in Sonoma.” “You should think about getting a lawn service and help with the gardening.” “You might take another cruise.” I leave “me” out of those plans. I continue to search for the “right” words, the most “helpful” words. Sometimes I hit a wall.
As long as I can remember, I’ve wrapped myself in the flesh of language. Now I wallow in an alphabet of ambiguity. I don’t know what I’m thinking until I speak it. And even then, I’m not sure. Language is just too finite to describe the infinite, and that’s what death seems like to me now. Infinitely indescribable.
From The Divine Art of Dying—How to Live Well While Dying (2014) by Karen Speerstra and Herbert Anderson. With permission of Divine Arts, Studio City, California. www.divineartsmedia.com