You were clutching your stuffed rabbit, who was already more gray than white, and bare in patches. I had bought the rabbit for you at a toy store in New York the day after you were born. At the time, it was almost as long as you were. Now it wasn’t even the length of your torso. “Yeah, but what is all of that made out of?” you said insistently. “Where does it come from?”
I thought about this for a moment, trying to recall what I had read in a book a few years earlier. “Well, Em, experts think that much of what we are comes from the inside of a giant star that exploded billions of years ago. The star’s parts contained material that makes up the parts in your body. The calcium in your teeth and bones, the iron in your blood, the carbon in your genes—”
“What are genes?”
“Um, like tiny Legos that make up your entire body. Parents pass them on to their children, so you come from my genes and Mommy’s.”
“Whoa.”
I smiled. “I know. Pretty neat, right? Anyway, all that comes from the inside of a star. So we’re basically made of star stuff.”
“But not like those stars,” you said, pointing to the plastic glow-in-the-dark constellations I had stuck to your ceiling a few months earlier.
“Nope,” I said, pulling the cord to lift the wood blind over the window next to your bed.
Why is this blind so hard to open? And—oof—when did Emerson get so heavy? I thought as you threw yourself on my back to look over my shoulder at the night sky.
“More like those,” I said, pointing up and out. It was early in the evening, and the moon would be full in another day or two, so we could only see a few stars.
“So that’s what we’re made of,” you said knowingly and tightened your grip.
“Sort of, yeah.”
“Cool.”
“Isn’t it? You and I are going to have to take a better look on a dark night.”
I kissed your forehead, then tucked you in. As I pulled the blanket up to your chin, just how you liked me to, there it was again: a deep, base understanding that something was wrong. My hands and forearms felt too weak for someone who had just spent many months doing push-ups and planks. The twitching I felt in my muscles had nothing to do with my caffeine consumption. Something more ominous than middle age was at hand. As I said good night to you from your doorway, I understood that there would be no wishing away this ominous thing. Whatever it was, it was time to face it.
I returned to the same health clinic. “It’s likely a common problem, such as an iron deficiency,” said the primary care physician who had been called in after I told the receptionist that I refused to see another resident.
“Didn’t you just check for that on my physical exam?” I asked, not able to conceal my irritation.
“Oh right,” he said, frowning at the computer screen that he had spent more time looking at than me. “Well, it could be anything. A thyroid problem, Lyme disease, a small tumor.”
“Fantastic,” I said.
He swiveled on his stool. “It beats the alternative.”
“Which is . . . ?”
“A more serious condition,” he said opaquely. “We’ll cross that bridge if and when we get there.”
There would be no “we”; I was sent to cross the bridge with a neurologist. I could not recall having ever spent more than twenty minutes with a physician. My neurology appointment lasted almost two hours. I went through reflex and strength tests and an exhaustive recalling of my health history (which had been, up until the previous year, completely normal, though there was the issue of my mother’s early death).
When that was over, the neurologist—a fit woman in her fifties whose name escapes me—told me she wanted me to have more tests, including another blood panel, an MRI, and an electromyogram, which involved inserting tiny needles into my muscles to see if they had become too lazy to respond to stimuli.
“What is all this for?” I asked her.
“I want to rule out certain conditions.”
“Such as what?” As with the previous physician, I was running low on patience.
“Spinal muscular atrophy. Or ALS,” she said.
“ALS? Isn’t that—”
“Amyotrophic lateral sclerosis. It’s also known as Lou Gehrig’s disease. After the baseball player who—”
“Yes, I know,” I said. I sounded pathetic, even to myself. I had been thinking—what was I thinking? I don’t know. A tumor on my spine, maybe. Multiple sclerosis.
“As I said, James, this could be a lot of things. But twitching and persistent, progressive muscle weakness on both sides of your body is indicative of this particular disease.”
That was the last I saw of her, too. Two days after I had an MRI, she called to say that it looked normal. “That’s good, right?” I said.
“Normally, yes. But in this case, I thought perhaps we would see some lesions or some such that would explain your weakness and fasciculations. That is, the twitching you’re experiencing.”
“And my electromyogram?”
“I’m afraid it appears you have definitive signs of muscle atrophy and nerve damage. That’s a sign that you may have motor neuron degeneration. I’d like to send you to one of my colleagues.”
Yet even when the receptionist called to tell me to bring a loved one to my next appointment—“It helps to have someone else take notes while you listen,” she said, entirely too cheerfully—I still hoped for the best, because that is what you do when you have a family and no fewer than four thousand other reasons to want to remain among the living.
The specialist’s name was Sarah Stevens. She looked to be about the same age as the resident.
“Let’s hear it,” I said as soon as I sat down.
“James, I like your attitude.” Unlike the other doctors I had seen, she didn’t bother turning on the computer. She didn’t have a clipboard or chart with her, either. Based on the tenor of her voice, I decided that she was probably my peer and just had one of those preternaturally young faces. “From what I’ve seen, it seems there’s a strong possibility that you may have ALS.”
“May?”
“Unfortunately, there’s no blood test or any other definitive test for ALS. It’s a disease that makes itself known through symptoms. If your symptoms do, in fact, become worse, then we will have confirmation. I can say with some certainty that what you’re experiencing, and what your test results have shown, fit the bill.”
After my last neurology appointment, this diagnosis could not be called a surprise. And yet it was like I had just been sucker punched, and I let out a wretched noise.
Nora put her arm around my shoulders and pulled me close. “It’s all right,” she whispered. “It’s all right.” She kept saying it, like she was trying to convince us all, and as much as I appreciated the effort, I now knew that it was never going to be all right again, and I would have to spend the rest of whatever was left of my life dealing with that.
“James,” said Dr. Stevens again, “I know this is terrible to hear, and I am so incredibly sorry. But I want you to know that there is much we can do to improve your quality of life over these next years. There’s an FDA-approved medication called Rilutek that we can consider for treatment, and together we can explore the possibility of pursuing a clinical trial.”
“It’s fatal, though,” I said flatly.
Her gaze was steady. “Yes. I’m afraid ALS is fatal.”
It’s funny, when someone close to you dies, it’s almost impossible not to reflect on your own impending mortality. Death is nothing if not a reminder that no matter how long it may be, life is always too short.
But after the shock wears off, a sense of invincibility sets in. Aren’t the odds slim, you might think, that I would die soon after someone else I knew and loved did? Certainly that was my reaction to Wisnewski’s passing. If I’m honest, I’m pretty sure I spent several years thinking, Poor Wisnewski; maybe one day I’ll get to thank him for getting that early death thing out of the way for all of us.
It’s a shame that death doesn’t actually observe a calendar or strictly adhere to statistical probability. Unless you live next to a nuclear plant or in a war zone, there is little correlation between your life span and that of those around you. It happens when it will, and like Wisnewski before me, my number had been called. I would have to wait in line for a while, but there was no mistaking which line I was in.
So many of my memories of that day and those that followed were washed away by confusion and grief. I do recall that as I left the doctor’s office, one of my first instincts was to pick up the phone and call Rob, just as he had called me when his company collapsed. Mine was a different sort of disaster, but he must have felt a similar sense of shock and loss. But I had not heard back from him after sending him my letters, and I knew my call would not be welcome.
I remember sobbing in the car, too, and Nora pulling into a restaurant parking lot, climbing onto my lap, and sobbing with me. I remember driving myself to the house and trying not to break down when you came flying down the stairs at me, delighted that I had come to visit on an unscheduled day.
And I remember Lou’s face—stoic, knowing—as I walked into the kitchen, took her hands, and told her that the very long story she and I now shared with you would soon belong to the two of you alone.
TWENTY-SEVEN
October–November 2013
“Of course he’ll come live here,” said Lou sharply. “This is his home. He needs to be with his daughter.”
It was Sunday night, and Nora and I had dropped you off per the usual custody split, if the informal agreement I had with Lou could be called that. I should have known something was up when Lou suggested you turn on cartoons, given that she believed television sapped one’s gray matter. (I was fairly certain you had gray matter to spare, which is why I may have let you spend a bit too much time vegetating in front of the tube when you were staying with Nora and me.)
As soon as you were out of the room, Lou asked us what our long-term plan was and if I might consider returning home. Nora had scoffed, Lou had balked at her scoffing, and instantly a barbed wire fence had been erected within the respectful distance they had given each other over the past several years.
“He will be with Emerson,” said Nora. “She can spend more time with us. James can spend more time at your house. But him moving is out of the question. It will be . . . easier to get around at our place.” She meant in a wheelchair. “Our condo’s on the ground floor, and we can take the bedroom on the first floor.”
Lou was perched on the kitchen counter, legs dangling off the edge. “And how long do you think that will last?”
“Indefinitely,” said Nora, jutting her chin out. I could sense the rage churning in her, and I was already dreading the discussion we would have on the car ride home.
“Hello?” I interjected. “I’m right here. Do either of you have any interest in what I think might work?”
It had been four months since my diagnosis. I had disclosed my condition to Nessa (always fun to send a coworker into spontaneous sobbing in the middle of the workday), and together we had begun exploring the possibility of my transitioning to a reduced schedule. I suppose I could have quit outright and gone on long-term disability, but I would need to use that option soon enough.
Anyway, part of me wanted to preserve some semblance of normality while I still could. Nora seemed intent on it as well. Maybe too much so.
“What do you think, James?” she said now, turning to me. She expected me to side with her the way a partner should. After all, that was my role, and one that I had relished. But to my left there was Lou, and to look at her was to see you. And yes, Lou was right. I wanted—I needed—to spend as much time with you as possible.
“I think I can’t make a decision like this on the spot,” I said, and both Nora’s and Lou’s faces softened.
“Of course,” said Lou quickly.
“Maybe we could set up an actual time to discuss this,” said Nora, looking pointedly at Lou, who knew Nora well enough to understand that springing an important talk on her wasn’t going to go over swimmingly. Then again, the last person Lou was likely thinking of was Nora.
Which is what I told Nora on the way home.
“Maybe, but it’s still rotten of her,” she said.
“Can we approach this rationally? This is hard for her, too. She just barely learned that she’s going to be a single parent in very short order.” I took a deep breath, not to calm myself, but because I had the sensation that a medium-size mammal—say, an obese wombat—was sitting on my chest. I thought we would have longer before my breathing became strained, but Dr. Stevens said that we should start talking about a BiPAP, a noninvasive device that would help pump air through my weakening throat. “Your disease appears to be progressing,” she had said.
Appears. May. Might. Probably. So many conditional words, all of which belied the inevitable truth.
“Of course. Look at you; Dr. Stevens herself said you’re doing great,” said Nora, touching my shoulder lightly before moving her hand back to the steering wheel.
“Except the whole foot-drop thing,” I said. “The you’ll-need-to-use-a-walker-soon thing. And the breathing—”
“It could be anxiety.”
Could: another white lie.
“Sure,” I said, and took a deep breath.
I met Lou for lunch at a Japanese restaurant downtown the following week.
“It’s good to see you. You know, sans the chaos of the drop-off routine,” she said once we had been seated.
“You, too.”
Her face lit up. “You know what I was thinking about on the drive over?”
“Hit me.”
“Remember that time you, me, and Rob went to the Iggy Pop concert at Irving Plaza a year or so after we got married? Do you remember how Rob wanted to rage all night and told us to go home alone, and then we ended up going to a bar instead and he beat us home? I’ll never forget the look on his face.”
I laughed. “I haven’t thought about that in years. He wanted to murder us.”
“He wasn’t even an Iggy fan!”
“Those were happy days,” I said wistfully. The longer I went without hearing back from him, the more I felt that our parting had truly been final. Knowing that I was not long for this world made this feel particularly heartbreaking, but I was determined not to use my disease as a bargaining chip. If he reached out, I would tell him, but not a second sooner. “Do you miss him?”
She pressed her lips together and looked across the restaurant, then back at me. “Yeah, I do. It’s—well, I don’t say this to make you feel bad.”
“Come on, Lou. I think we know each other better than that by this point, don’t we?”
She smiled. “We do. It’s just . . . hard to be alone sometimes. Especially when Em’s staying with you and Nora.”
The waiter appeared. Lou ordered sushi; I chose a noodle dish that would not require me to use chopsticks, which I was certain I could not maneuver; even gripping a toothbrush had become an undertaking that required concentration and more than a small dose of willpower.
“You don’t have to stay alone,” I said. “You could date again.”
“I’m a bit of a bald eagle in that regard.”
I looked at her quizzically.
“I mate for life,” she explained. “You know that I really never had a serious boyfriend before Rob?”
“You’re kidding me.”
“I kid you not.”
The waiter set small black bowls before us, each filled with a foggy broth. “So would you go back to Rob?” I asked in what I hoped was not a too obvious way.
“I heard from him again recently.”
I lifted my head, which felt like it had recently doubled in weight. “Did you? And what did he say?”
Her smile was resigned, and I quickly began to tell her that she shouldn’t go on—I shouldn’t have asked and didn’t need details. But she put up a hand to stop me. “No,
Jim, it’s okay. We share almost everything now, don’t we? Especially this, really.”
“I suppose,” I said.
“He didn’t say much, to be honest. He asked how I was doing and what I was up to. And he asked if I might send a photo of Em. I didn’t send it yet, of course,” she added hastily. “I wanted to ask you first.”
I tried not to grin; if he was asking for photos, my letters must have had some effect. “Of course you can,” I told her.
“Thanks.”
“Do you think you might reconcile with him?” I asked in what I hoped was a casual way.
She gave me a small smile. “I’d rather see you go back to him. The two of you should make up.”
“Before it’s too late,” I said bitterly. As soon as I said this, my spoon slid through my pointer and middle fingers and fell to the floor, sending a splatter of miso every which way. “Crap,” I muttered.
“No worries. I’ve got it.” She wiped the mess in front of me with her napkin, signaled for the waiter, then continued as though nothing had happened. “Yes, I’d like to reconnect with him, but I don’t know what I want out of it. Over the past couple years, I’ve started to see that I played a big role in why we split.”
I had, and Rob had, too. But Lou? She hadn’t, and I told her as much.
“No, Jim, really I did,” she insisted. “I could have asked him to work harder on our relationship. When I felt he was cheating, I should have made him talk about it—and talk some more until we got to the bottom of why he was acting that way. I wanted so badly to have a partner who wouldn’t abandon me that the minute it seemed like he wasn’t going to be there for me, I ran in the other direction to try to save myself that loss. In the end, it only hurt worse.”
“A quest for perfection at the cost of everything,” I said. “I know it well.”
She reached across the table and squeezed my forearm. “Which reminds me, I didn’t ask you to lunch so we could talk about me. What’s next for you, Jim?”
“Let’s see,” I said slowly. “What’s next is a walker, then a wheelchair. Dropping my utensils, then being spoon-fed by someone else. Labored breathing, then a ventilator. Decay, then death.”
Forever is the Worst Long Time: A Novel Page 21