(Listen to this post in my own—reconstituted—voice here.)
I sit by the fire this morning, watching sunlight spread across the valley. It touches the dormant trees first, then spills onto the white field of snow. The world lies still beneath its winter blanket. Only the birds move. Chickadees, cardinals, and white-throated sparrows crowd the patio feeders, their songs carrying through the cold glass.
The children still sleep on this midwinter Sunday. My caregiver moves quietly in the next room, tending to the small rituals that begin a day and, perhaps, end a life.
Five years ago, on another cold February morning, I received my diagnosis of ALS and the expectation that I had only two more years to live. No cure. No hope of one.
Yet I fought.
At first, with drugs, vitamins, herbs, acupuncture—anything that might slow the disease. Then, I turned to literature, philosophy, meditation, writing, and simple observation. The only medicine that worked. It strengthened my mind and opened my eyes to beauty I might never have seen so clearly without this long twilight before dawn.
Now, paralyzed below the neck, struggling to swallow, breathe, and speak, I fight by becoming part machine: wheelchair, ventilator, liquid nutrition, ceiling lift, and the maddeningly undependable miracle of a camera that reads the reflection of infrared light on my cornea—placing a cursor on a screen, allowing me to write these words and steer my chair with a flick of my eyes.
Whether these efforts made the difference or whether my disease has simply taken its unhurried course, I cannot say. But here I am, five years later, bathing in the lengthening light—its cold winter white softening toward the pale gold of first honey.
Now, with gratitude, it is time to whisper my goodbyes.
In recent months, I chose to decline surgical ventilation and enter hospice. I chose to die here, surrounded by the forest, releasing this worn body as gently as I can.
In the weeks ahead, my lungs may quiet in my sleep on any given night. Without the strength to cough, a mild cold could quickly become pneumonia and draw the curtain closed within days. But if my body holds past Easter—when a gap in holidays and family birthdays would spare my loved ones the shadow of this anniversary—I may choose to refuse food and water, and let go as naturally, peacefully, and kindly as I can.
It is not so different from choosing to fell a great tree—beloved yet clearly unstable—before the right wind brings it crashing onto the house or the living things beneath its branches.
So I am saying goodbye now, while I still have the strength and language to do it well.
As my body has failed over these five years, I have tried to put in place what might continue to radiate my love for my family and all of the beautiful, terrible, suffering, wondrous world in which they live.
Rather than mourn the grandchildren I will never meet, I wrote and illustrated a children’s book, Ahtu, so that I might still be there, in a way, at bedtime—helping my children tuck my grandchildren into bed. I published it for other children and parents who are equally in need of comfort after a long day.
Rather than simply endure decline and death, I chose to explore them—to meditate on this journey we all share and to leave behind useful field notes. To live this suffering deeply. To embrace it. To learn—and to share that learning as widely as possible, helping others through this most common of journeys.
Not knowing how much time remained, I first shared my meditations on my blog, The Twilight Journal. Now, with gratitude to my agent and editor, they will soon become a book, What Remains Is Radiant, published by Godine Press. I hope many who face life’s hardships find comfort in these words, painstakingly spelled out with my eyes.
Rather than surrender to the despair of being imprisoned in my own body—confined to a patch of woods and three downstairs rooms—I chose to think of the countless others trapped by body, mind, or circumstance. From that reflection, I planted the seeds of Radiant Book Giving, a nonprofit offering the medicine of literature to those who need it most.
I share this not to speak of legacy or bravery, but in the hope that these words find you when you face your own hard truths.
After all, once I am gone, to whom does legacy matter?
And I do not feel brave.
I feel porous.
Slowly hollowed of self, infused with what lies beyond it, and entrusted—responsible, even—to share the wonder of what I can see from here, as best I can.
I want you to see that there is nothing to fear. Like leaves falling to nourish the roots that gave them life, like a wave breaking on the shoreline and sliding back to the sea, we let go only to rejoin what we never truly left.
There is no death. There is only this dance of endless becoming.