June 22, 2019, dawns beautiful, clear and bright in our corner of the Mid-Atlantic, calling to mind the day of our wedding twelve years before. The second half of those dozen circuits around the sun have been hard. Today, we’re barely seven months post-transplant. My single liver we now share between the two of us, his own having been incinerated with the rest of the biohazardous waste accumulated by the hospital that day back in November. I’ve had plenty of chances to think that we’d never see another anniversary together.
He’d told me, a week or so earlier, “Don’t do anything for the anniversary, I’ve got something planned.”
It felt like the first good sign since our transplant team had diagnosed him as rejecting the new liver graft. Maybe we were finally getting the rejection under control? Maybe we’d finally gotten the meds right? Except for his waxy skin, and his drifting in and out of vacant stares, and the yellow tinges to his eyes coming and going like I might be imagining them…
But when he says not to make plans, he’s got the anniversary taken care of, I’m relieved almost beyond all reason. He’s getting better. We’re getting better.
I’m all in.
I put on my cutest scuba dress and, because I’m pretty sure where he’s taking me, my cutest sensible flats. We head out, and not knowing for sure the plan, I still have the sensation that we’re late.
He takes me, as I suspected he would, to board a sunset cruise on our wedding schooner. For a minute, today looks so much like that day, bright and blue, our sunglasses on, I’m nearly transported back in time. But he’s forgotten that there’s no valet parking at the hotel where she berths for the summer. (That’s why the bride, with her family, jaywalked across the four-lane street to get to her own wedding, after parking in a public garage some blocks away.) He hasn’t really allowed enough time to go find parking before the boat is set to sail, and he’s tired and pale, and a bit on edge at the cusp of fucking up our anniversary plan. I have him get in line to board, holding my place, and I speed off and park the car in the first might-be-a-spot on the street I can cram four wheels and a chassis into. My cutest sensible flats do double-duty as I run-walk in my cutest scuba dress to my forgetful, pale husband, and catch him just as boarding starts. (Today, the bride is the last one on the boat.) It’s a gorgeous day, though, and I’m grateful. We board and claim our spot in the setting sun with three dozen strangers. We take a few pictures once we’re under sail, us mugging, me smooching his cheek, a picture of our left hands, and the gold bands there, together on my knee.
I tell him that I’m so glad we’ve made it here. He tells me about one of his substance abuse counselor’s other patients, who died alone in rehab, no partner, no family.
And I think, thank God you’re not alone. I’m thinking about him. But I’m also thinking about me. If you were alone, then I would be too.
I can remember the sound of them laughing, John and Mom. It was right after we’d come home from the hospital, and they were installing an automatic hand-sanitizer dispenser at the front door. They’d stuck the batteries in before mounting it on the wall, and fully and prematurely operational, it was whirring and burping out foamy antibacterial pillows all over the floor the whole time they were putting it up, and they were laughing like loons over it. I’d stopped what I was doing upstairs, just to listen.
The transplant surgery was one of the most effective dress-rehearsals for a pandemic we could have hoped for, if hopes ever tend to disasters. We were ready to go, with stashes of masks and gloves, and the hand-sanitizer dispenser on the wall by the front door. These were the tools for surviving immunosuppression.
The body acts on a cellular understanding of self and other, of being fundamentally separate. Even one-celled organisms can sense not-self. If this sense operates at too fevered a pitch, one’s own body becomes foreign, and it destroys itself in fits of autoimmune paranoia, from the inside out. If this sense is too muted, the body is overtaken, and is destroyed from the outside, in. Like so many things in biology, it’s a delicate balance.
Of course, John’s body knew there was a foreign object where his swollen, scarred liver used to be. If left to its own devices, it would corral its immunity armies to fight the invader off, to cease its function, to eradicate it utterly: to reject it.
That’s why he, like anyone with an organ transplant, was initially on heavy doses of immunosuppressants, steroids, antibacterial, antifungal, and antiviral medications. This fistful of drugs keeps the immune system from attacking the invading organ, and keeps potential sources of infections and inflammations at bay; another delicate balance.
Rejection still happens, though. The causes aren’t always understood.
In another life, in my own cartoonish notion of rejection, the body takes offense and barfs up an organ it finds not up to snuff, spitting it out like a piece of bad food. Obviously that’s not what happens at all. As with many things medical, the process is far more complex and insidious.
By the time Mom returned for a spring visit, things were different, obviously wrong, and going downhill. We got into the worst fight we’d ever had right in front of her. Even in the throes of dire embarrassment, I just didn’t seem to be able to make it stop.
The fights didn’t get better when she left, either. Or when the rejection was diagnosed, and the fistful of drugs modulated, seeking the elusive balance.
But then, John suddenly became quiet, calm, peaceful. There was even a bit of humor, a bit of tenderness, that had been missing entirely for months.
Noting this, I tried to ignore his odd moments of vacancy. I startled at different moments, when in certain lights, his eyes looked yellow. I told myself that his pale, waxy skin was a side effect of his lack of sleep. I was sure things would be okay. At least the smell hadn’t returned, the tell-tale odor that marked the pre-transplant encephalopathy: ammonia and sulfur running riot through his body and leaving a vapor trail that smelled sweet and cloying and awful. (Foetor hepaticus is the medical Latin for this “hepatic stench,” informally, not exactly comfortingly, referred to as “the breath of the dead.”)
I spent the weeks leading up to the anniversary trying not to sniff him like a cadaver dog, at least not obviously.
“You can have a drink, you know,” he tells me.
Our anniversary sunset sail is over, and to close out the evening we’re in our favorite little Italian restaurant downtown, run by a whole family from Verona. Our menus are open; the wine list is closed.
I shrug. “I don’t need to.”
“You can, though.”
“It’s okay, I really don’t want to.”
We go back and forth like this for several rounds.
“Come on, it’s our anniversary,” he tells me.
Of all the entreaties, that’s the one that finally gets me. Come on, for us. I order a glass of very fine red, the first drink I’ve had in a year and a half. He opts for Pellegrino. But there is something in his eyes the moment I acquiesce: a look of relief, like I’ve finally decided to join him. It startles me like a whiff of ammonia. But it passes quickly.
Dinner is excellent. So is the wine.
When we get back to the car, there’s a parking ticket. It turns out that my might-be-a-spot on the street isn’t a spot at all, as the large sign on the post next to it indicates rather clearly. I slide the ticket into my purse without even a twinge. The fifty-dollar fine seems a cheap price to pay, a small cost for an anniversary that was anything but certain.
As the physical rejection raged, before the eerie calm, so did our fights. He’d tell me: I’ve always been alone. You can’t understand me because you can’t understand that.
I’d tell him: You are not alone, you can’t be alone, because I am not alone. Remember? You don’t remember. How can you not remember?
We’d been together for almost a quarter of a century. We’d lived together for years in single rooms, in 500-square-foot apartments. Sometimes we’d hardly be able to get more than twenty feet away from each other. We’d even commuted to work together for almost a decade.
He’d tell me: I am alone, and I didn’t want this. I didn’t ask for this.
I’d tell him: You couldn’t ask.
Even dying, he was suicidal, unless he was suddenly terrified and wanted to live.
He’d tell me: I am alone, I didn’t want this, and there is no love in this house.
I don’t have to look down to know my scar is there. I don’t have to touch it to feel it. The skin’s healing, fading from red to pink to silver, and the muscles under it remember. Severed nerves that never rediscovered their mated connections from across the slice are a constant, quiet, numb throb.
I was too scared to say: If you’re alone, then I must be too.
The week after our twelfth-anniversary cruise, I’ll come down into the basement after a workout, and find him passed out on the couch, with a bottle of Heavy Seas Double Cannon IPA clutched in his unconscious hand. I’ll find cases of the stuff in his cabinets, white skulls prominent on the bottle caps.
For this rejection, there will be no medication.
If you can relate this this feeling of rejection, real and tangible, or just as real and emotional, please consider joining our Echoes of Recovery program for those who love or have loved and alcoholic.
Barbara, I love your writing. It really helps me– an alcoholic/addict struggling with sobriety– to see how my drinking affects those around me and the pure insanity of it all. Thank you for sharing.
Hi, Sloane, thanks so much for reading! We all have so much to share and it’s an amazing thing to be able to see the world, especially surrounding addiction, through another’s eyes. It’s a sign of incredible strength on your part to be willing to do that. I’m so glad to know that it helps you: you deserve help, support, and love in your process. All my best hopes are with you!
P.S. Sorry for my late reply!