January 30, 2018: Without The Glow Of Hope

The letter I wrote to Matt on January 30, 2018 was short, a scant six lines and ninety-seven words. And every time I read it, my heart hurts for that last year version of myself. Because I remember too well the moment that sparked this letter and I remember too well the way the sound of Matt’s breathing made it hard for me to breathe and how every moment began to feel like a grim vigil.

One year ago today, I referred to Matt in the past tense while I was sitting right next to him. As a writer and a reader and a lover of language, I felt the significance of my mistake reverberate through me for hours. Matt was still here, still with us, and I used the past tense. Could there be any greater betrayal? In my mind, the answer was a definitive no.

So I wrote to Matt and I apologized for this final betrayal, those words, which were all but the admission I’d been afraid to speak aloud: that I didn’t have hope he’d wake up, that I recognized our eleventh hour miracle wasn’t coming, that I couldn’t manage to scrape up any more hope for him.

I apologized for those words and I apologized for not finding a way to have hope, even when there was no hope to find. I apologized and told him he deserved better than hopeless.

In many ways, the next few days were the hardest of any in our twenty month battle. Without the glow of hope to look toward, there was nothing to fight back the dark truth of this terrible disease.

I didn’t write to Matt again until February 4th.

Instead, I read others people’s words. A few days earlier, I’d posted our story—Matt’s story—to the brain cancer forum. For twenty months, I’d been reading the stories posted on the brain cancer forum boards by anonymous strangers, looking for ways to distinguish our story from the saddest endings. When it became clear that our story would have that saddest ending—whether in weeks or months—I added my voice to the many already posted. What I received was an outpouring of support from strangers who read Matt’s story—all of it, from his first successful surgery to the recurrence we treated with poliovirus and the swelling we combatted with Avastin and the third tumor that disappeared under gamma knife radiation…the hydrocephalus and the shunt and the vision loss and the leptomeningeal disease and the final, desperate surgery and the devastating final MRI—and understood too well the mix of despair and disbelief and exhaustion and grief.  What I found while reading the comments from people who had walked a path like ours—not identical to ours, but close enough—was compassion. And what I hoped, while I spiraled into a place where hope was nothing but a memory, nothing but a lingering curl of smoke where an ember used to burn, was that the story I wrote would one day give hope to someone else—either because she’ll find a way to distinguish her story from ours or because she’ll know she’s not walking this path alone.

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