Brain cancer doesn’t care that your nerves are scrubbed raw. Brain cancer doesn’t care that your chest is so tight with stress and fear that it’s hard to breathe. Brain cancer doesn’t care that it’s your birthday and the one person who knows you better than you know yourself is all but gone and the person left in his place is viciously and viscerally angry with you.
One year ago today, I turned a year older. I drove to Columbia and arrived to find Matt awake, eating cereal and milk with his fingers, and still in the recovery ward—ward, not room. He had a bed that was curtained off on either side from other post-op patients who were also granted the same limited space. His bed, the one we’d waited a week for, had been given away while he went down to surgery, and now the hospital again had no space for him in the neurology ward. So he was trapped in the recovery ward, surrounded by the moaning and coughing of other patients, by machines that beeped and shrieked and squealed at unknowable intervals. I understood why he was frustrated and agitated.
But he was awake, and something in his expression was just a bit clearer than it had been before. Putting aside the lack of spoon in his cereal and milk, something about Matt seemed just a touch more with it. It was heartening to see. It was proof—not quantifiable, not even measurable—but proof, nonetheless, that the surgery had helped Matt come back to himself.
But the doctors and nurses warned it might get worse before it gets better. And their warning proved too true.
I offered him a spoon and that snap of anger was there. I should have known better—that high dose of Dexamethasone he’d been on for days should have alerted me. I put the spoon back down on the tray and sat beside Matt, curling into a ball on the chair beside him because there was little room for anything else. I didn’t expect Matt to know it was my birthday. Before surgery, he’d struggled to remember the year, and even if he was capable of remembering the year post-surgery, he hadn’t looked at a phone or television—he couldn’t know the date.
Then Matt needed to use the bathroom. Because he was hooked up to half a dozen machines monitoring his vitals, because he was in the recovery ward where the bathroom was out the door and around the corner, because he wasn’t in a private room with nurses assigned specifically to him, he wasn’t allowed to stand. I told him as much and tried to hand him the urinal the nurses had left.
And I should have known better. Because the words he said next, the things he said and did—
Maybe it wouldn’t have hurt so much if it hadn’t been my birthday, if I hadn’t walked in with the highest hopes of having Matt back. Maybe it wouldn’t have hurt so much if I hadn’t been so exhausted and stressed, if there hadn’t been a thousand still raw cuts that hadn’t scabbed over.
Technically, January 19, 2018 was my last birthday with Matt. But when I look back, I can’t help but think it was my first birthday without Matt. For the last few weeks, whenever friends or family asked what I wanted to do for my birthday, my body reacted before my brain. Tears burned behind my eyes and I had to swallow down that rush of emotion. It took weeks to understand the reaction, it took writing 301 posts, actually.
For 301 posts, I’ve been looking for the day I lost Matt, and I’ve noted that I may never know that day. And while I’m sure that’s true, one year ago today, after a successful surgery that removed 85% of Matt’s brain tumor, after walking into a crowded recovery room with the highest hopes, I think some part of me realized that I was still fighting for Matt and I’d already lost him.
I’d already lost the Matt who knew that sometimes my birthday felt complicated, who made my birthday into an occasion with a capital O, who helped me throw ridiculous parties with names like Black Out or Get Out—not my finest confession, but we were in our twenties and living in the city, and I can’t tell a true story about Matt and Elaine without at least one reference to this ( epic?) party.
When I left Matt (who did get moved into a proper room on the neurology floor) for the night to be with G and H who wanted to celebrate my birthday with me, Matt’s sister met me in the Columbia parking lot. We drove home together and I was determined to keep the truth of my visit with Matt to myself. His family and friends were struggling enough and I didn’t need to add my heartache to that burden. But…I barely made it over the George Washington Bridge before the tears flowed and I told her everything.
That night, family surprised me. G and H decorated the house and we (a large family we) ordered in sushi. Afterward, a few friends invited me out for a glass of wine. I wasn’t going to go—my heart was too heavy; how could I even think about going out while Matt was fighting for his life—but I was talked into going, convinced into believing that I was allowed, deserved even, a night to breathe. I wasn’t sure that was true, but I went. One glass of wine turned into three (turned into a hangover the next morning). Matt, and the road we still had to travel, was in the back of my mind the entire time, but for a few hours, I could pretend I was nothing but another mom out for a girl’s night.
The world of brain cancer is full of contradictions. And here’s one more. January 19, 2018 was one of the worst days I’d known. It was a day when my heart broke and I couldn’t patch it over before the scar formed. But it’s also a day I’ve never felt more loved, a day so full of light I couldn’t possibly get lost in what was an entirely new and terrifying kind of darkness; there was too much light, too much love, and too many people who didn’t allow that to happen. I hope they all know how grateful I am for that light and love that saved me. And I hope Matt knew that light and love was always there for him, too, even when he couldn’t see it anymore. It’s a hope I will never stop hoping. It’s the birthday wish I’ll never stop wishing.