Here's the first sentence of Virginia Woolf's essay On Being Ill,
Considering how common illness is, how tremendous the spiritual change that it brings, how astonishing, when the lights of health go down, the undiscovered countries that are then disclosed, what wastes and deserts of the soul a slight attack of influenza brings to view, what precipices and lawns sprinkled with bright flowers a little rise of temperature reveals, what ancient and obdurate oaks are uprooted in us by the act of sickness, how we go down into the pit of death and feel the waters of annihilation close above our heads and wake thinking to find ourselves in the presence of the angels and the harpers when we have a tooth out and come to the surface in the dentist's arm-chair and confuse his "Rinse the mouth—rinse the mouth" with the greeting of the Deity stooping from the floor of Heaven to welcome us—when we think of this, as we are so frequently forced to think of it, it becomes strange indeed that illness has not taken its place with love and battle and jealousy among the prime themes of literature.
If anyone asks what it means to be a great writer, point them to that perfectly grammatical 183-word sentence. In one sentence, Woolf conveys a larger world than I can in a 1200-word post.
.Woolf wrote that illness shows us the "wastes and deserts of the soul." Cancer kills by colonizing and destroying your body systems. It also kills by destroying your soul, crushing you with fear, suffering and despair. So many patients take their own lives.
I am writing to save your life, not by telling you why you shouldn't kill yourself, but by helping you find ways to keep living.
Jesus taught us to live without fear or worry, like the birds of the air, because "they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them." (Matthew 6:26).
But what kind of bird? When I got cancer, I became "a desert owl, like an owl among the ruins" (Psalm 102:6), a bird who knows how to suffer and survive.
As if cancer were insufficient, I continue to suffer periods of atrial fibrillation (AF, chaotic and inefficient cardiac rhythms). When I am in AF,
I'm in pain. AF itself doesn't hurt, but it seems to amplify the pain of cancer. Pain stabs up from the tumour site in my throat to my inner ears and radiates up from there to the top of my skull. The fentanyl and hydromorphone I'm already taking will no longer cut it.
I'm cold. Wrapping myself in blankets doesn't help much; the cold is inside, somehow. It's as if a fluid, cooled a few degrees below body temperature, were flowing through my bone marrow.
I can't sleep well. Whatever process scrambles my heart's rhythms also wrecks my kidney function. I wake up frequently needing to pee and can't get uninterrupted sleep.
I'm prone to fainting, which confines me to a couch or chair.
I can't think clearly. A fog—a toxic fume, like diesel exhaust—permeates my brain. It's a state of exhaustion: the pace of my thought slows to nothing.
I can endure this, but it's more than just distress. In suffering, there's a sense of being overwhelmed and under existential threat. You question the value of life. I commend Ross Douthat's account of his experience with extended Lyme disease, The Deep Places.
[S]o little in my education had prepared me for this part of life—the part that was just endurance, just suffering, with all the normal compensations of embodiment withdrawn, a heavy ashfall blanketing the experience of food and drink and natural beauty.
Douthat—a conservative, right-to-life Catholic—experienced thoughts of suicide.
[I] felt the brain fog that so many Lyme patients talk about, descending like a cloud over my mind, and my capacity to write—the one thing that had been preserved for me throughout my illness—began to slip away. With the cloud came, for the first time in my life, a suicidal current in my thoughts—temporary like all my symptoms and therefore survivable, but still a repeated pulse of just kill yourself, just kill yourself, just kill yourself that lasted anywhere from a few minutes to an hour before it fled.
Douthat's suffering was worse than mine, even though he was not dying. He had trouble getting people to believe he was ill. But everyone believes in cancer.
And whereas Douthat’s suffering was unremitting, my AF lifts, albeit inexplicably. When it lifts, it's as if linemen have restored power to my home. My heart converts to a normal rhythm. My pain diminishes, I'm warmer, and my brain clears. Something relights my inner life—the capacity to see what is true and what is beautiful—the most important things I have ever had.
I once had the immense fortune to visit the Venetian church of Santa Maria Gloriosa dei Frari on a winter day when the city and church were almost empty. The main altarpiece is Titian's Assumption (the church is dedicated to the Assumption; Titian is buried there). I’m talking about that light.
When AF lifts, I can walk, think, and write. Retrieving these faculties brings joy. And joy is the point of life, the opposite of suffering. It's more than just happiness: joy is a deep, persistent state characterized by contentment, purpose, and connection to life. Joy motivates virtue; it finds delight in the well-being of others and expression in sharing your joy with them. The continuing possibility of joy is why the desert owl suffers but survives.
Here, I am inspired by Pope Francis, who began his apostolic exhortation Evangelii Gaudium (The Joy of the Gospel) as follows:
The joy of the gospel fills the hearts and lives of all who encounter Jesus. Those who accept his offer of salvation are set free from sin, sorrow, inner emptiness, and loneliness. With Christ joy is constantly born anew.
I experience my breath, heartbeat, and the illumination of my internal life as unmerited gifts from God. Many of you will not appreciate talking about Jesus in this context, and that's fine. I will be happy—no, I will rejoice—if you can experience your breath and inner light as gifts. And if you can, follow Pope Francis this far: if you experience joy from whatever source, proclaim it; it will spread to others.
I’m deeply grateful for your moving meditation. Thank you for sharing your spiritual reflections on suffering. Your joy is inspiring and will comfort many.
A powerful piece of writing, Bill, thank you. Much that is deeply resonant and much else to consider - all inspiring. And thank you for sharing the quote from Virginia Woolf, it's perfect. Wishing you much more time out of AF.