The Seventy Percent

On the Serpent, Fear

Snake in the Grass, Photo by Elizabeth Bohannon

I’ve maintained a journaling practice for twenty-eight consecutive days, inspired by Suleika Jaouad’s The Book of Alchemy, and for ten long days, the prompts have been about fear. So I’ve been writing my way through the dark, through fear.

Writing through fear didn’t make it go away. In fact, it might have made it louder. I’ve been holding a flashlight to its face. It looks uglier up close. But when I stare into its yellow eyes, I begin to understand it. Maybe that’s the point.

I’ve journaled on fear many times in the years since my diagnosis. But this entry, from April 22nd, when I was deep in aggressive treatment for aggressively progressing disease, sticks out. I was exhausted, raw, and clinging to the idea that writing might help me stay awake to the emotional upheaval, stay curious, stay alive.

And so I let fear take the pen.

Dear Elizabeth,

I am your fear, and this is what I want to tell you:

I’m afraid I am too much.

I’m afraid I am too intense.

I’m afraid I may be targeted by the Trump regime.

I’m afraid it may all be my fault.

I’m afraid we will run out of money and not be able to get the care we need.

I’m afraid my life doesn’t matter.

I’m afraid I’m not enough.

I’m afraid I will die before I have a chance to prove that I am enough.

I’m afraid to leave my children behind.

I’m afraid of what comes next.

I’m afraid nothing comes next.

That’s what fear said as it curled around my spine like a serpent, sunk its teeth into my bones, and whispered terrible prophecies in my ear. Writing through fear helped me name it, see it, feel it.

The serpent fear came to the appointment with my myeloma doctor last week. I shared our conversation about fatigue in this essay—that moment when he told me the exhaustion might last for months, how it hit like a truck.

What I didn’t write, what I couldn’t write, because it was still too raw, was what came next. In the next breath, he looked at me with such enthusiasm, and sang out:

“But you saw the results, Elizabeth, right?”

I blinked. “What results?”

“The Carvykti study. You know about it, right?”

Of course I knew. Every myeloma patient knows about that study. It was covered in the goddamn New York Times. The study reported that thirty percent of people who received Carvykti—the CAR-T product I got in June—had no evidence of disease five years later. That’s a phenomenal result in myeloma-world. Very, very encouraging.

But thirty percent is not one hundred percent. Thirty percent is not a promise. It’s a maybe. A hope. And when you’re negotiating with fear, hope can feel dangerous, snakelike.

I understand my doctor’s excitement. He treats myeloma patients. He’s been doing this blessed work for a long time, and until very recently, he was merely able to extend most of his patients' lives by a few years. In that context, the possibility of curing some of us must be incredibly inspiring.

I wish I smiled and shared a joyful moment with him, but I didn’t.

I felt fear arise and, if I’m honest, anger too. Anger that he dangled this shiny percentage like it was a gift I should be grateful for. Anger that he assumed I’d be one of the lucky ones. Anger that he put a statistic between me and the truth of this moment, which is that I don’t know, and neither does he.

Because seventy percent of us do not end up disease-free. And all of us must learn to carry hope and fear like two jagged stones in the same pocket.

That’s where I am now. Not at peace. Not in despair. Just in the messy middle, trying to work it out.

I don’t like to admit this. I don’t want to disappoint the people who have stood by me, who made it possible to stand on this precipice, to be so much closer to a cure than I ever imagined. I want to celebrate.

But fear is a full-body experience. It is an intelligent parasite that sucks our energy and feeds on the unknown. It’s an affliction every human suffers. We are all vulnerable to its paralyzing venom.

Suleika tells of a conversation she had with her friend, the author, Elizabeth Gilbert. Elizabeth told her, “You don’t have to be particularly brave. You just have to be a tiny, tiny bit more interested in something than you are frightened of it.” I’m holding that.

I don’t have answers, but I do have this moment. I am curious about my experience. I am writing about it and through it.

That’s enough for now.

If you’re in the middle too, let your fear take a walk with mine for a while. Let it speak. Ask it what it wants. What it needs. What it’s afraid to say out loud.

Maybe you’ll hear something true and find your own way through. I’ll be by your side.

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