Because now is all we have
My loss, by sickness - Was it Loss?
Or that Ethereal Gain
One earns by measuring the Grave —
Then - measuring the Sun —
- Emily Dickinson
Ever so often, a sentence arrives that splits me open. Two weeks ago, one did.
I had called my friend Alex, pacing in the kitchen with the phone pressed to my ear, frustrated by the language that circles illness. We dress it in metaphor, a battle to be fought, a punishment to be endured, a journey to be chosen. To be told you are fighting cancer suggests that if you die, you lacked the will to live. Even ‘survivor’ carries a shadow, implying others simply failed.
Alex listened quietly and said, “ Most people in your situation are focused on living not to die, I think what you’re trying to say is that you’re living to live.”
The words rearranged the air in my lungs. It was as if the ground shifted beneath me. The difference between survival and existence. Between holding on and inhabiting.
The doctor told me that the median life expectancy for my stage is two years. I hold optimism that I could live for decades and grief in the same hand. I am not a statistic, but I’m also not naïve. The timeline is shorter than I planned, shorter than feels fair. Yet, I find solace in remembering that death is not a failure but a fact. As Sontag wrote, “Illness is the night-side of life,” a kingdom most prefer to keep at arm's length. Illness is not a metaphor. It is not a parable. It is not a referendum on strength. It simply is. Cells dividing where they should not be.
This past year has been my worst in many ways, but also my best. I have been undone and remade by the grace of humanity, strangers I’ve never met, people I barely know, friends I’ve known since birth. I’ve felt the odd sensation of attending my own funeral while still breathing. As doors close, others open. I found a creative life I would never have made space for in my old world.
Death gives life its shape. It’s Heidegger’s being-toward-death, a horizon that gives coherence to existence. Illness strips away illusion, and what remains, paradoxically, is not nothing. It is not absence, but a presence stripped to its core. Something stripped-down, luminous in its clarity.
Oddly, those of us who live life with life-threatening diseases are lucky. When you know life is short, life comes into clarity. The unnecessary falls away. Presence sharpens. You think at first you want to do everything until you find contentment not in accumulation, but coherence. You discover the most radical act is not to do, but simply to be.
Last week, someone in my ocean swimming club in San Francisco died. He was 35, a year older than me, and also a daily open-water swimmer. His sudden death has looped in my mind, not because of similarity but because of the abruptness of it all. William Stafford once wrote, “ It could happen any time, tornado, earthquake, Armageddon. It could happen. Or sunshine, love, salvation.” We live as if permanence were promised. But the truth is, we wake each day without guarantees.
And still, what a miracle it is to wake at all.
I got back from Burning Man a few days ago. It was my shortest trip to the desert, 41 hours all in, but the most profound. I didn’t plan or chase; I simply wandered into dust storms and firelight, into the arms of friends. For once, I allowed myself to just be. It felt like training for this new life, a life measured not in how long it stretches but in how vividly it burns.
Every morning, I return to a question: what would it mean to die happy, knowing I had lived fulfilled? I have no shortage of dreams and wishes, but the answer is never one of accomplishments, rather one of sensation. It’s the pure joy you feel on a perfect summer day when you know it will never last, the first spring bloom, the flicker of sunlight on your loved one’s hair. The Japanese call it yūgen, beauty that hovers just beyond sight, the fleeting wonder of something already slipping away.
When I was first diagnosed, I joined countless cancer support groups. I quickly left them all. They served a purpose, but they felt heavy, airless. I’ve longed for a room of light. I’m renaming my blog, ‘The Live Now Club’, because I want to create a place where mortality and joy sit side by side. A place for anyone willing to hold their horizon in view and live anyway.
So I ask you the same question I return to every morning:
What would you do if you knew your time was short?
What would you do differently? What remains unsaid and undone? What life would you claim as your own?
On my last night in the desert, my friend Tessa told me I blink every time someone says they love me.
This is me learning to stop blinking. This is me living life with eyes wide open. This is me living now, because now may be all we have.
And this moment belongs to you too, what will you do with it?
All my love, Lou
