(an excerpt from a memoir in progress)
All the previous deaths were un-posted;
word came by ring tone or Post, not post
The first death by email was Linda’s,
the stunned silence of a monitor, your face.
You raced down the hall and leapt,
shrieking to your then-well husband, “Linda is dead!”
You have since committed the crime of alerting,
signaling death’s sentinel by a mouse-click of Send.
When your husband died, you kept him home one more night,
the urgency of a funeral home, a coroner, not your own.
You slept on the futon beside the hospital bed in the then bedroom,
once dining room, where you had at one time only celebrated.
The next morning he no longer resembled the man you had wed.
When the gurney took your Love out the door, you sat before the monitor,
stunned, and alerted all you knew through the only words you had left.
Bob had a long sleep. It was probably not more than an hour, but it felt like much longer. Time has a way of changing depending on our emotions. Car wrecks occur in slow motion. A meaningful kiss or good sex that lasts minutes feels like thirty minutes, an hour. We are shocked when we look at the clock and we’ve been transported “there and back” and only twenty minutes have passed.
That day seems both long and short at the same time. Waiting in the hotel room with the kids while Bob was at the hospital. Long. Very long. Driving to the hospital. Long. Very long. Looking for Bob in the hospital. Long. Very long. None of these took anywhere near the same amount of time. The whole day. Short. One day: December 29th. One day and our lives together had been abbreviated as quickly as placing a period at the end of a sentence. There was an end mark now, and we had a pretty good idea of when it was going to be.
Bob didn’t actually get diagnosed that day in St. Louis. He told me, after the nap, that the doctor’s didn’t issue a diagnosis, and I stared blankly at him, in shock again. My mind began replaying the past few hours of our lives: “If they didn’t diagnose you, then why do you think you have ALS? Why did you tell me you have ALS, if you don’t know whether you have ALS?”
We had spent the last several hours writhing in mental anguish, exhausting ourselves to the point of passing out in the middle of the afternoon, all four of us, Bob, the kids, and me, in a hotel room, and he wasn’t dying.
But he was dying. He had told me so.
“They just talked about me as though I wasn’t in the room.”
“ALS is the only thing on the table; it’s obvious that’s what I have.”
“They just don’t have the guts to tell me. They want to do the tests, but the tests aren’t going to show anything. I have ALS, that’s what I have.”
When Bob had pressed the doctors for alternative diagnoses, they had had none. They just wouldn’t commit to ALS that day because there is no affirmative test. It’s a process of ruling out other possibilities. Bob couldn’t pee on a stick, like I had repeatedly to try to figure out whether I was ovulating so we could get pregnant, or get blood drawn from his arm, as I did to confirm the pregnancy that was such a miracle, or undergo an MRI, as I had just before I was diagnosed with Lyme disease, to know for certain that he had ALS. This seemed absurd to me.
“They can’t know whether you have it? Ever? They just guess?”
“If you want to make a lot of fucking money doing nothing, become a neurologist,” Bob remarked, sarcastically.
“All they do is push and pull at you, shit they did two hundred years ago, then look at what you can already see for yourself, and say, ‘Yup, your arm is twitching, you are weaker,’ and send you home. It’s fucking bullshit. They don’t know fucking anything about this disease.”
But Bob did know something about it; he knew what he had.
“I have ALS,” he said, and he said it the way he said all things he was certain of, like how far he would go to protect our children or me, or how he would write anyone off if they didn’t accept us for who we were, including his own family, or how convincing he was when he told me he loved me.
I asked him how long he had known. He said he was pretty sure the moment he looked at the description of the disease over my shoulder on the computer screen, but today at Barnes-Jewish Hospital had confirmed it. “When would they know? When will they tell you?” I asked. Bob said he was supposed to talk to the doctor again later that week, but Bob said he knew, and I believed him.
The children were still asleep when the first texts started rolling in:
“Did you hear anything?”
“What do they think it is?”
“Hey, just checking in. Let us know how it went today.”
I told Bob people were asking. Some of the texts had come in while we were napping. I needed to figure out whether to respond, and what I was going to be telling people.
Bob told me I should start telling people he had ALS. “That’s what it is. Just tell them that’s what it is.”
When Bob tells you he has a terminal illness and you can start calling people, you do it. You do it because you believe and trust him more than anyone you’ve ever known, not because he’s always right, but because he never once pretended he was when he wasn’t, and so you know he’s right, and you tell people because you must, because telling gets it out of you, because telling, the adrenaline of launching into 911 mode, the digesting of information for you comes from saying a thing aloud again and again as a sort of chant, and so you will. You will call. You will tell.
Bob knew how much I would need a support system. He knew nearly everything about what I needed before I did. He predicted my needs throughout his illness and he was right; he helped prepare me by being the one to tell me everything first. Soon, I would become that for him, too. I would be the one who could see from the outside, and could predict what he needed next, like to no longer climb stairs, or a bed rail, or different medication. We propped each other like this – we always had – and now we were going to do it better than ever before and more consistently and constantly.
Bob told me I should start calling people, but not his family. That could wait until the next day. He would call them himself. He needed some time.
The hotel room was standard with two double or queen beds, a TV, a chair or two, etc., and so the only place I could make phone calls with privacy from the children was in the bathroom.
After the kids awoke, ate room service because we couldn’t muster the motivation to even leave the room, and got sucked into the television, I walked into the bathroom, shut the door, turned on the fan, sat on the toilet, and watched myself in the mirror like I was watching someone else’s life in a movie. I wasn’t in my own body.
I called the few people who had been waiting for the results of the visit to the hospital. The people who had told me to call or who were texting me while everyone was sleeping. I continued to make calls. I don’t recall in what order. I know that some people weren’t home. Everyone was sure “the diagnosis must be wrong,” that “a second opinion was necessary,” that “surely this couldn’t be true.” I told them Bob said it was so and I believed Bob. I cried, sitting on the toilet, staring at myself in the mirror, uttering the words and maintaining some degree of composure and strength by remaining partly numb through it all. The conversations came with shock, disbelief, encouragement that the diagnosis may be false, or that certainly in Bob’s case it would be the longer prognosis, that we could do this, that we were strong.
Bob was forty-three. The kids were three and nine. I was forty-two.
I didn’t feel strong. I was tired of being strong. People had been telling me I was strong my entire life.
I must have eventually left the bathroom and climbed into bed with Bob and gone to sleep myself with the twitching in his arm beside me not only telling me what was, but now becoming an ominous foretelling of what was to come. Exhaustion guided us to sleep and we held each other close, despite that we had never been those kinds of sleepers. We were intertwined in every other way, but given Bob’s size and mine we could never quite get comfortable in each other’s arms in bed. Just as while standing, in order to make our lips meet, without craning my neck, I had to stand on a step, in bed my neck always had to be craned to be on his shoulder, and my arms could barely reach over his 40 inch waist when we were spooning, but on this night we held each other all night and slept deeply the way one does after physically laboring all day.
When you have children, especially young children, you are required to keep your own emotions and needs at bay more frequently than not. This maintenance is exhausting and necessary in order to care for them and accomplish all of the things life demands. While we did not hold everything in as Bob and I believed in at least a degree of controlled honesty, we certainly couldn’t curl into the balls we wanted to curl into and just stay in that hotel room alone for eternity. We needed to check out, drive home, unpack the car, feed the children and ourselves, and generally go on living despite my wanting and his not wanting to die.
Moments in your life come in flashes of scenes. The scene in the hospital lobby. In the bathroom of the hotel room. In the hallway when a friend called back and the kids were awake and I burrowed into a corner near an ugly floral decoration and confessed to one of our closest friends that one of her closest friends, my husband, was dying while people rolled suitcases past me toward the elevator. I smelled the wallpaper and stared at the baseboards. Tears ran down my cheeks and started my nose running, too. I, a washer of hands dozens of times a day, wiped my nose on my sleeve. I didn’t care about anything else but that moment, that telling. I shooed the kids back in the room as though they had no idea what was happening when they wanted to comfort me.
And then there is the vision of leaving the parking lot that morning. The van was loaded, Bob was driving, and I was in the passenger seat. As Bob took the turn out of the lot, he turned toward me, then back out the window. The kids were surely buckled into their seats, but Bob and I were immersed in our own world in the front. The early morning sun was shining through the windshield and onto the dash and into our eyes as he cranked the wheel towards the exit, glanced at me again, and then again looked forward, back at the lot and said, “I want you to love again.” Another blow. Another shock. And dread. And awe.
“What?”
“I want you to love again. I want you to find someone else after I’m gone.”
“Seriously? I don’t want to talk about this. I’m not ready to talk about this. I don’t want to talk about this,” I said forcefully, as I gripped the armrest on the door with the sudden urge to exit the moving vehicle.
“I mean it. I want you to go on and love again after me. You deserve love in your life.”
“I don’t want to talk about this,” I said, becoming angry.
“Okay,” he said. “But I want you to know that. I just want you to know that.”
It hadn’t even been 24 hours since we had learned he would be going anywhere and he was already thinking about me and imagining my future. I was still back at the hospital, holding him in the lobby, crying in front of strangers, even though he was breathing right next to me in the minivan as I stroked his bald head and neck on the drive back home from Missouri to our beautiful home in Illinois.
While the sky was sunny and clear, the roads without snow cover, we drove home in a mental fog. We were exhausted and overwhelmed as we stared ahead at the road knowing what we hadn’t known two days before and only beginning to comprehend the truth of it. I’m sure I was interacting with the kids and offering them snacks and generally trying to act as normally as possible, but I don’t remember their being there. I hardly remember my being there. Our lives and the van itself receded in my mind.
Bob was barely present in his own body, too, as a ticket received a month later in the mail confirmed. He apparently caught the tail end of a yellow light just outside of Hannibal, Missouri, and was issued a ticket for running a red light. Our van was caught on camera and there we are in the image, two shadowy figures in the front seat of a white minivan hurtling towards a future that now had an abrupt stop. When the picture and ticket were sent to us, it felt like yet another cosmic joke. It was as though we had been frozen on camera if only to preserve the hell we had suddenly found ourselves in. We now had a concrete image of what it was like to be literally driving towards death.
Accidents often occur in slow motion. Speeding tickets and death warrants occur in slow motion. But it was all so fast.
The poem first appeared in Nine Muses Poetry in 2018.
