Forever is the Worst Long Time: A Novel

by Camille Pagán

  Lou looked wounded.

  “I’m sorry,” I said quickly. “I wasn’t trying to be a jackass. I’m just not feeling particularly optimistic right now.”

  “Don’t apologize. I can’t begin to imagine how you’re feeling. But—you’re not there yet. When I was so depressed after Em’s birth that I was fantasizing about accidentally overdosing on sleeping pills—”

  “You were contemplating suicide? I had no idea it was that bad.”

  “Of course you didn’t, Jim.” She took my hand. “I needed you to keep seeing me as something better than I was. I don’t think I would have made it through otherwise. My doctor told me that if I would just focus on doing what was most important, what brought me the most joy, then the days would string together to become something coherent—something better. There’s still time, Jim. I can’t tell you what to do with it, but I’m going to be blunt: it still feels to me like you and Nora are both operating as though everything’s going to remain the same. Maybe it’s none of my business, but as the mother of your child, I’d like to think it is. Yes, the terrible things you mention may well come to pass. But in the meantime, I’d like to see you try to make the days more joyful. Do you really want to keep writing copy for the business school? What about taking another stab at a book? What about having a few more adventures? And what about marrying Nora? I suspect that would make both of you very happy, and Em, too.”

  I said nothing. Instead, I thought, How has Lou yet again given voice to the longings within me that I could not admit to myself?

  She squeezed my hand. “You spend good time with Emerson, and that is what matters most. But as someone who has known you for so long now, I think you should think even more broadly. Make it count.”

  The drive back from the restaurant would be one of the last I would make; my reflexes were slowing, and I could not continue to take the wheel if I couldn’t be certain I could maintain control. So I took the long way—through downtown, out along the Huron River, until I hit the rolling hills at the city’s border. The roads were canopied by magnificently colored leaves, and I thought again how I had loved living in this particular pocket of the Midwest. Staying, at least, had not been a regret.

  As I drove back to my condo, I considered what Lou had said. It was true that I had loved and been loved, and that mattered more than any unmet goals. I no longer cared that I had not lived in a big city or ever attempted that hundred-mile bike ride.

  Still, it rankled that I had not ever written a whole book. And yes, Lou was right about Nora. She had said she wasn’t sure she wanted to get married, and I had let it go at that rather than risk the failure of being turned down. But it was not too late.

  “Hey, Nor?”

  It was a few days after I had lunch with Lou, and Nora and I were sitting on the small deck, enjoying the warmth of an Indian summer evening. Her long legs were stretched out in front of her, and she was holding a beer on her stomach.

  “What is it?

  “Do you want to get married?”

  “Yes,” she said, without hesitating. “When?”

  “Right away.”

  “Let’s do it.”

  “Are you sure? You said at one point you didn’t know if you ever wanted to get married.”

  She gave me one of her don’t-mess-with-me looks. “Now I know.”

  “There are a few things we should probably talk through before you say yes for sure.” I explained that I would leave everything to you and entrust the house to Lou until you were old enough to inherit it, so that she could raise you there as long as she saw fit.

  She got up and sat on my lap, her eyes filled with tears. “James, I don’t need anything from you but you,” she said.

  I opened my mouth, then hesitated; what I was about to say next was the one thing that could change everything—that could make Nora say “No, maybe let’s not get married, after all.” “I would like to move back into the house with Lou and Em,” I told her. “Not right away, but . . . toward the end.”

  She nodded. “I had a feeling that was the case.”

  Neither of us said anything for a while.

  “It would be easier on you,” I finally said.

  “Screw easy.”

  “You used to think that was one of the better parts of our relationship.”

  “Our relationship has changed.”

  “Yes, because my body had to go and quit on me.”

  Nora put her hand on my face. “No, James, because I love you so much. You’re the best thing that ever happened to me.”

  I kissed her tenderly. “I hope that won’t always be the case. When I’m gone, I want you to find someone else to love. I know you can, if only you’ll try.”

  “Please don’t say that.”

  I thought of what Lou had said. “We have to start facing the facts about what this is going to mean for us. Sticking our heads in the sand doesn’t do anyone any favors.”

  She bit the sides of her cheeks, trying not to cry harder.

  “Nora?” I said softly. “You don’t have to decide right now, but when the time comes, I’d like you to move in with me. With us. Keep the condo, but come to the house.”

  “Won’t that be awful for Lou, having me underfoot?”

  “No,” I said, and I knew without having to ask Lou that she would say the same. “I think it will be easier for her in a way. Anyway, we’ve never been all that conventional, have we? This will be no different.”

  Maybe you’ll remember this; maybe you won’t—I’m not sure what the mind of an almost-five-year-old retains. On November 30, at Nora’s parents’ house in Bloomfield Hills, she and I exchanged vows and rings before our family and friends.

  Fifteen years earlier, almost to the day, I had spoken about happiness and meaning to an ecstatic Rob and Lou. Lou was again at the center of this wedding. Only this time she was pronouncing Nora and me husband and wife, as she had been ordained by God-knows-what mail-order church in order to marry us.

  I gripped Nora’s arm and held your hand with my free hand as the three of us made our way down the center of the great room, where guests had gathered for our nuptials. I allowed myself to cry without reservation. Aside from the day you were born, it was the most joyful day of my life. But like your birthday, it too was punctuated by the absence of the best man I had ever known.

  Even as a new chapter began, another came to a close. On December 1, just a day before we were set to fly to the Florida Keys for our honeymoon, Nora and I went to a medical supply store and purchased my first walker.

  TWENTY-EIGHT

  Spring 2014

  “Daddy?” you called. You were in the middle of the kitchen floor, a notepad and crayons spread out before you.

  I looked up from the bowl of pancake batter I had been stirring. Every mundane act now seemed monumental: Would this be one of the last times I was able to effectively scrape the side of the bowl with a wooden spoon, ensuring that the heart-shaped pancakes I was about to make weren’t teeming with tiny pockets of flour? “Yes, love?”

  “Will you still be alive when I’m an adult?”

  I took a deep breath. How to answer such a question? “I don’t know, Emerson.” Probably not. “Why do you ask?”

  You held up a crayon to examine, then traded it for another. “Ivy said parents can die,” you said, referring to one of your classmates.

  “Yes, they can.” It took me a minute, but I lowered myself from the chair so that I was beside you on the ground. “Emerson, sweetie, I’m sorry to tell you this, but I’m pretty sure I won’t be around when you’re my age.”

  “Really?”

  “Yeah. It’s a bummer, sweetheart. Because wherever I end up, I’m going to miss you like crazy.”

  You stuck your bottom lip out, then looked down at the picture of the unicorn you were drawing. After a moment, you raised your head again and looked at me with sad eyes. “Daddy? If you’re not here, I hope I remember you.”

  I pulled you into my arms. Y
ou smelled like strawberries and soap. “I hope so, too, love. I really do.”

  Shortly after I was diagnosed, I questioned whether it would have been better if I had waited to see a doctor—or simply never found out what was wrong with me. After all, I had the misfortune of developing a disease so unfortunate that when you tell others you have it, they don’t dare suggest you pray it away or seek the assistance of a desert-dwelling shaman. With ALS, there are no stories of someone’s cousin’s wife being cured by a caveman-style diet or green juice infused with activated charcoal, whatever the hell that is.

  As I write this, there is but one medication available to me. It will add maybe a month to my life, three if I’m lucky, which I’m clearly not. There is simply nothing to be done but accept and endure. Not necessarily in that order.

  Yet I have come to find some comfort in knowing what it is that’s killing me. ALS has no known cause. While you may have inherited my knobby knees and long fingers, the odds of me passing this horrible condition on to you are extremely slim. I remind myself of this several times a day and again before I go to bed at night; it keeps the nightmares at bay.

  Then there is the matter of this book. The very day Lou challenged me to begin to come to terms with my fate, I opened the journal I had been keeping and set about to turn it into something coherent.

  It is different from my previous attempts, because this time, I wrote about the fractured marriage and impending apocalypse of which I knew. That is to say, my life.

  It is an incomplete history. I have allotted few words to my life after diagnosis. That’s not what I want to think about; that’s not what I want you to remember.

  And just as well. As the days go by, it becomes harder to write at length. I was lucky enough to have unloaded the bulk of these pages during the months in which I could still type. More recently, I’ve had to dictate to my computer, then attempt to move the mouse, delete ill-conceived words and sentences and paragraphs, and say what I meant to write the first time while hoping it comes out right.

  I am not sure it is coming out right.

  Surely this recollection is somewhat inaccurate, but I suspect that there’s no such thing as absolute truth. Every event is different to those who have lived it, those who have witnessed it, and those who only later read of it.

  It has been worth it to try. Madeleine L’Engle—you may remember, she wrote A Wrinkle in Time, which I read to you the year you were five, even though it was probably a little too soon and a lot too scary, because who knew if I would still have the chance the following year?—said, “A book, too, can be a star . . . a living fire to lighten the darkness, leading out into the expanding universe.”

  I began this story for you, Emerson. But in these dark days, it is for me, too.

  “Jim?” Lou’s voice roused me from a shallow slumber one morning. Ten already, I realized as I eyed the clock on the other side of the room.

  I had recently left my job and gone on full-time disability. I didn’t miss writing the press releases or puff profiles, but I missed my coworkers and the feeling of being needed.

  Now it was I who needed. Help me get this shirt on; help me get it off. I’m hungry; can you make sure I don’t spill oatmeal all over myself? Can you help me get up, sit down, pick that up, scratch this itch? The blessing of ALS is also the torture of the disease: you can feel everything. Your limbs and digits don’t work the way they should, and your throat and vocal cords fail you. But temperature, pain, numbness, itching—each sensation remains intact, even as you can do less and less about it.

  Anyway, I was still using a walker at that point and had not yet begun my stint in solitary confinement, as I would come to think of my wheelchair. Yet with every passing week it was harder to get around. And so Nora, Lou, and I decided it was time for Nora and me to move into the house.

  I expected the move to be a major upheaval, but I had forgotten just how adaptable we humans can be when change is not a choice. Just as the four of us had adjusted to my illness, our shared home life almost instantly became our new normal.

  Lou had converted the family room at the back of the house into a bedroom for Nora and me, and it soon felt as welcoming as our room at the condo. The four of us usually ate breakfast and dinner together. We planned activities together, too, and traded duties: Nora watching you so Lou could take me for a walk, Nora staying with me so Lou could go out with you. The days were long; the days were short.

  “Jim,” said Lou again.

  I had closed my eyes, maybe even fallen back asleep. I had been sleeping a lot—too much—and often wondered if it was true fatigue or just my mind’s attempt to block out reality. I turned to Lou drowsily. “What is it?”

  “There’s someone here to see you.”

  I rolled onto my side and pushed myself upright the best I could. I sometimes caught myself in a mirror or the reflection of a window. It was like watching a newborn foal try to get about. Messy business, this deteriorating.

  “Who is it?” I asked.

  “Me,” said a voice I had not heard in quite some time.

  Now I was awake. I tried to fully right myself, too quickly, and almost tumbled off the bed. I pulled my sweatpants into place, then tugged my t-shirt down over my stomach, which was concave, as though I was again a skinny teen who shot up before he filled out.

  Lou disappeared into the kitchen, and Rob appeared in the doorway. “Hi.”

  “Were you going to warn me you were coming?” I said, only half joking. “My bits and pieces could be hanging out.”

  “Good to see you, too, dick widget,” he said.

  “So having a degenerative disease has put me back in your good graces?” I cringed at the sound of my own voice, which had already begun to sound flat and nasal. But at least Rob had called me by one of my nicknames. You didn’t do that to someone you hated.

  Rob laughed uncomfortably. “Yeah, I guess so.”

  “Well then hey, douche nozzle,” I said, standing. As I reached for the walker beside my bed, I spotted Lou standing a few feet behind Rob, no doubt hanging around to see how this would play out. It was uncanny, seeing them together—almost as though we had just rewound a decade.

  I leaned into the plastic arm cuffs attached to the top of my walker, which helped me maintain control with a weak grip. I had no choice but to move at a snail’s pace. Catching my foot or the walker on the edge of a rug could send me tumbling to the ground, and I was neither fast nor strong enough to break my own fall. I had learned this the hard way the month before, in the middle of the grocery store. Humiliating doesn’t begin to cut it; something in my mind continued to resist the reality that I would never again be the person I once was.

  “God, James,” said Rob. When I reached the doorway, he put his arms around me, squeezing me hard, and what could I do but be grateful for the pain?

  “It’s been too long,” I said gruffly.

  “I know,” he said. “I know.”

  “Let’s go sit down.”

  He followed me into the kitchen. Lou was nowhere to be seen, but she had left two fresh cups of coffee on the table, as well as the sugar bowl for Rob and a small ceramic pitcher with cream for me.

  “So you got my letters.”

  Rob leaned back in his chair, his long legs spilling out past the edge of the table. “Yes. Though you didn’t tell me you were sick.”

  “I didn’t know then. Anyway, I prefer to think of it as less an illness and more an expedited expiration.” I cleared my throat. “I’m—I’m glad you came.”

  “Me, too.” His hair was as gray as it was black, and his beard was peppered, too. But something in his face had softened, like he was at ease with himself for the first time in a while.

  “It’s a shame that it took finding out I’m about to self-destruct in order for you to forgive me.”

  “Who said I forgive you?”

  My laugh came out as a grunt. “And if I said I was sorry?”

  “I may have heard it before. But now
that we’re face-to-face—are you? Really?”

  “Of course I am. But . . .”

  Just behind Rob’s head, the fridge was covered with your preschool art projects. A crayon drawing of Lou with butterfly wings. A painting of you, me, Lou, Nora, and the kitten you had been begging for but had not yet been given, in front of the house. A large, bejeweled mural that said DAD.

  “I am sorry,” I continued, “but I guess you should know that I don’t regret it. You were right that Lou and I weren’t supposed to be together. But our girl, Emerson—she’s everything. I would do it all again if I had the choice.”

  Sadness, unmistakable in its depth, surfaced on Rob’s face. He steeled himself. “I understand. I’m looking forward to meeting her.”

  “Me, too. You’re going to love her.”

  “I would tell you I’ll never understand why you did it, but—” He looked over his shoulder, maybe to make sure Lou was out of earshot. “The more I thought about it, the more I realized it’s in character for you. I mean really, it’s your classic move.”

  “And how’s that?” I remarked. If anything, pursuing Lou had been the least me-like thing I had ever done in my life.

  “Come on, James. You get obsessed with the perfect—not because it’s perfect, but because if you can’t have it, you don’t actually have to try.”

  I had come to a similar conclusion myself. Still, my face grew warm as Rob reminded me that I wasn’t the only one who knew about this flaw of mine. “Maybe when it comes to Lou, sure,” I said. “But that’s in the past now.”

  “Maybe when it comes to everything,” he said, not unkindly. “Remember how you quit the JV soccer team because you were pissed you didn’t make the cut for varsity? Or when you didn’t get into that one writing program you had your heart set on, you almost didn’t apply to Michigan? I can go on, if you’d like.”

  “Don’t,” I said, only half joking. “But what about you? What’s your excuse?”