I quietly unwrapped another peanut butter cup and watched my fiance´’s bloody spinal fluid course from the shunt in his skull to the IV bag at the side of his hospital bed. Seattle’s December rain pounded the nearby window, but Greg remained asleep, exhausted after this morning’s surgery to remove a brain tumor discovered six months prior, a mere five days after we had entered our giddy, mid-life engagement.
In the dim light, I examined Greg’s striking face. With his hair matted in some parts, shaved like crop circles in others, and with stitches resembling a conga-line of spiders, he looked more like an artist’s rendering of Greg than of Greg, particularly if that artist had imbibed copious amounts of our state’s now-legal weed. We were profoundly grateful, though: in post-op, Greg’s team of neurosurgeons confirmed his tumor was definitely benign.
But they also confirmed our second worst fear: because of the tumor’s viscosity, some of Greg’s balance nerves and the hearing in his left ear had been sacrificed. With physical therapy, his balance would return. His single-sided deafness, however, would remain.
A longtime professor, Greg is uncommonly astute. When I first entered his hospital room, he yelled through his anesthesia stupor, “I love you, babe! I want to marry you!” Then he paused and said, with a crack in his voice, “We’re both fucked now!”
I set aside my walking gear and carefully took his IV-free hand into my crutch-free hand, like we were performing Neuro ICU kabuki theater. I wanted to cry, but knew tears would literally add salt to his wounds. It’s not that my feelings were hurt. Far from it: I’ve had MEcfs, similar in many ways to M.S., for 25 years and use humor to diffuse the myriad obstacles all disabled persons encounter. I wryly call myself far worse than “fucked” and am fortunate my loved ones and editors understand my physical parameters. But I loved Greg so much that his newfound vulnerability scraped at my heart.
“Hey, Handsome Genius,” I said, using my nickname for him. “I still want to marry you, too. We’ll figure this out.” I leaned on the bed’s armrest and we managed to kiss deeply without dislodging any catheters. Then I took my crutches and hobbled to my nearby cot and Greg fell into a deep sleep.
I lay flat and tried to read, but the words hopscotched and I couldn’t concentrate. I was 48 and Greg was 52 and each of us had buried plenty of loved ones, a number of whom had died suddenly and unusually. Indeed, that we could discuss this on our first date over pork tacos was part of what had bonded us. So, we knew we were lucky death’s barreling eighteen wheeler had narrowly averted our mini-scooter lives. My previous longtime partner Neal had died in a mountain climbing accident five years prior and for a long time I’d felt destroyed. Through months of weekly neuro appointments with Greg, I’d stayed outwardly calm while my insides felt like shredded lettuce. But Greg learned everything about his tumor and together we’d entered surgery eminently informed.
Which was why, lying there, I was exhausted yet still somehow restless because Greg was right: we were both fucked now. Despite the help we were getting from friends and family, I was the primary caretaker and I can only remain upright a few hours a day on my best days. (Everything I’ve published I’ve written lying down.) And while I’ve learned to navigate the world with an active mind and an uncooperative body, Greg was new to the realm of convalescence and recovery and staying patient when your caretaker makes the coffee as weak as you feel and then feeling guilty for that twinge of impatience because without your caretaker, you would starve to death, caffeinated or not, in a heap of unwashed pajamas and half-read magazines.
I excavated my overnight bag for the peanut butter cups I’d brought from home. I usually eat healthily and knew it was key I maintain whatever strength I could, but also believed in the restorative powers of a well-timed treat.
I sometimes wonder if this same unfettered optimism is ultimately what did us in.
Despite all the corpse listing, Greg and I had first connected with great ease and much fun at a neighborhood bar near our then homes. I had half-heartedly dated men since Neal’s brutal death, but Greg and I could already finish each other’s sentences by the night’s end. I was drawn to his polymathic tendencies–he can teach, play guitar, take photos, cook, and as I would soon discover, make-out with alacritous ability–and he and his colleagues had discussed my work at length before Greg knew me. And I enjoy flattery at least as much as I like peanut butter cups.
He emailed me the morning after that first date and without much discussion, we began spending more time together. At brunch, he’d give me his buttered toast, which I consider chivalrous. We shared similar tastes in literature, film, and music and when we didn’t, we learned from one another, even if I learned I do not like Gaelic dirges.
Greg said he fell in love with me as he walked me home after an early date. It was bitterly cold and he noticed my legs seemed numb, but he was impressed that I kept discussing foreign policy with acuity while dressed up and laughing. By the time we reached my front door, he said he knew I was the one. And I fell in love with him shortly thereafter, because how could I not love a man who not only saw past the crutches and read everything I published, but was also brilliant and kind and funny?
One night after sex, he made us a huge platter of spare ribs and we ate them nude on his living room couch, so when he proposed a few months later, of course I said yes. This was how I wanted to grow old. And we’d planned an 18 month engagement because we’d only been together six months and knew, of course, we wanted to pace ourselves.
Five days after he gave me the ring, a routine doctor appointment for a sinus infection unearthed a brain tumor behind his left ear. Our commitment deepened but our mischief became an act of will more than a manifestation of new love. Our days centered on assembling his surgical team and planning the best course of action. To distract us both and make Greg laugh, I played Chris Rock, Patton Oswalt, and Wanda Sykes clips. I Googled the most absurd sex toys I could think of just to see if they existed, and showed him the results, the two of us howling and occasionally horrified. (No one should do that to zombie parts. Not even other zombies.)
As if this weren’t enough, I stuck to my publisher’s deadline and turned in my book Altitude Sickness, in part about Neal’s death. One half of our couple was a professor with a brain tumor and the other was an author with a disabling illness who was helping her live partner navigate a scary neural tripwire while writing about her dead partner at night.
Lying on my cot next to his hospital bed, though, all I could see was how many hurdles we had already cleared. Paradoxically, I took this as a good sign: our love was strong and would thrive. If I had to speak into Greg’s right ear henceforth or if he opted for a hearing aid, so be it. His stitched and shaved face remained beautiful to me. “He’s my guy,” I thought and finally closed my eyes.
In some ways, that week in the hospital seems like a port in the storm.
Once Greg completed his physical therapy, he began riding his long dormant motorcycle, prompting several arguments. I was thrilled he felt
He wanted to play his guitar for two hours each night, more than he ever played before the surgery. I felt he was literally and metaphorically tuning me out.
We were unraveling and everything I said seemed to make things worse. And I confess, the more exhausted and fed up I became, sometimes that was my intent.
We broke up three months before the wedding.
This week makes a year since we ended.
And now it seems more unlikely we were together than that we’re apart.
This morning I found his pomegranate vinegar wedged behind actual food I eat in the cupboard and it seemed like a prop from a film set where I played
The poet Alex Kuo wrote, “We are/ what we have lost…” and I know it’s true because I feel scooped out, with bloody chunks missing and arteries randomly severed. This time last year there was a man I was going to marry and now I don’t even know his current address.
I’m old enough to know both that life just happens and that I remain among the lucky. I can search for reasons or deeper meaning but I’m certainly not entitled to them.
The way some people can eat and drive without spilling, I’ve learned to grieve and somehow not swerve into oblivion. It’s a valuable skill, but I’d be happier, say, if I’d learned to juggle.
Greg and I won’t know who we might’ve become if a few cells hadn’t mutated.
I try not to think about it, but sometimes I do.
In all ways, I wish him well.