January 16, 2018: The First Words I Wrote

The day before’s logic proved true. With Matt in the hospital, everything happened sooner. By the time I sent G and H off to school and arrived at Columbia on the morning of January 16, 2018, Matt was already hooked up to the EEG machine, which was supposed to reveal whether the incidents that had happened over the last week were caused by subclinical seizures. By the afternoon, the test revealed, and the doctors confirmed, there was no seizure activity.

By noon, the surgeon had been in to see Matt and determined that Matt was not a candidate for laser ablation—he had a cyst in the left parietal lobe tumor and it might not respond well to the heat from the laser. I don’t know if I was disappointed—from the beginning, it had seemed too good to be true. But, after a closer look at Matt’s chart, the surgeon determined that since the poliovirus procedure was not a surgery—only a biopsy—Matt was a candidate for a limited craniotomy (meaning a removal of some of the tumor). But there’d be serious risks. And there’d be no guarantees. The surgeon could perform the operation on Thursday, the 18th, but the decision whether to move forward was mine.

One I had to think about. I needed more information and more time before I made this decision for Matt. Time to think and breathe, to talk to Matt (as much as I could) and Matt’s parents, to find one more glimmer of hope in the darkness.

By nightfall, the spinal MRI still had not happened. Delays upon delays. I went home to put G and H to bed—I couldn’t be in two places at once and G and H needed their mother as much as Matt needed his wife. How to be in two places at once? How to be two people at once? A caregiver and a mother? These were questions I struggled with constantly during these last weeks.

At 8:12 p.m., I received my last text from Matt, Matt’s last text to anyone. He wrote “Hey” followed by a few messages I couldn’t quite make sense of. When I called him, rather than continue texting, he didn’t answer. Nevertheless, I was over the moon, so sure it was a sign of an upswing. Prior to this, Matt’s last text message to me had been his Chipotle order on December 18th.

One year ago today, in the very early hours of the morning, after a sleepless night, I started writing our story. The prequel to this blog. Not for G and H, not for myself. But for Matt. The very first words I wrote in this story were to Matt. I opened a new file, started with the words “Dear You” and ended with “Love, Me.” I wrote to him about our day and his latest admission to Columbia, wrote to tell him all the things I could not say to him. I wrote simply because I missed talking to him. I wrote because some part of me knew I was on auto-pilot and barely functioning enough to keep the details of the day straight.

I wasn’t going to re-read these letters. Ever. The plan had been to never look at those words I wrote to Matt. But a few nights ago, after apparently deciding that if I’m already in a grief pit, I may as well keep digging deeper and see if there’s a bottom, I re-read the letters.

The letters to Matt—there’s so much detail in those letters that I’d forgotten. Stories and moments and heartbreaks I didn’t share over text message with any friends and that I’d either blocked from my memory or failed to store as some self-protection mechanism; there’s that version of me in those letters that I was with Matt, that version that I know disappeared when he did; and there’s a stark honesty about the decisions we (I) faced and the truth we were living.

One year ago today, I started writing as a lifeline to cling to in order to keep myself from drowning, from losing myself entirely. One year later, I’m still writing, and despite the grief waves, I know I’m not drowning. So thank you to everyone reading along—even now, when the story is reaching the darkest days and the sharp edges cut through every attempt to dull them—for reminding me that I’m not alone and for giving me a reason to continue writing, to continue holding onto that lifeline to myself.

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