I did not want it to end.
Dr. Stevens says that about ten percent of people with ALS live ten years or longer. By the time you read this, that number might be much higher—at least that is my hope. Maybe researchers will have even found a cure.
I don’t say this to Dr. Stevens, but I won’t be a part of that ten percent. I’m pretty sure we all know that. This is not born of my innate pessimism or some secret superstition that expecting the worst will leave me pleasantly surprised. It says nothing about my belief in miracles. (For the record, I think they look nothing like a touchdown in the last seven seconds of the game or even missing a flight that then mistook the side of a mountain for a runway. A miracle is the first time you touch your child’s downy skin; it is every time you hear her laughter. It is a mouth you love upon your own; it is the life you purposefully forge with another person.)
As to this disease, it is what it is. I’ve always hated that expression, and yet it’s the one I have used again and again while attempting to explain to others how I have come to terms with what is happening to me. This horror that’s devouring me one neuron at a time is just a variation on a theme. Each story is different. Every story ends with loss.
THIRTY
September 2015
As I begin this chapter, we are again in Grand Marais. The four of us are staying at Yvonne’s cottage. My father and Miriam have rented a house a block away, and Rob is at his aunt’s, half a mile down the road. Terry, the gregarious young nurse who now shows up most days to care for me, has come, too, though he’s housed at an inn at the top of the hill.
Yes, the gang’s all here to celebrate me having had one more go around the sun. I’m not sure if I am honored or embarrassed by this communal gathering. I am at least glad to be sharing the celebration with Lou, who will turn forty next week.
So I have lived to see forty-three. In a few months, you will be seven. I’m fairly certain I will live to see that, too, but I won’t be writing then. Every page takes more energy, and I need it for other things.
There you are now, skipping into the living room in a sundress and rubber flip-flops. Light spills through the windows, turning your curls into a golden halo.
“Hi, Daddy,” you say, gently putting your arms around my neck, then giving me a kiss on the cheek. “You getting enough air?”
I hate that you have to worry about this, even if I love that you do. I nod, pull my head back from my BiPAP machine that pushes air through my flaccid throat into my lungs. “Yes. Thank you,” I said. “How are you, Em?”
“Good! Mommy says we can get ice cream again later.”
“Yum.” I practically live on the stuff these days; it’s high in calories, which I have a hard time getting enough of, and almost effortless to eat.
“Mint chip?” you ask.
I make a noise that is meant to be a laugh. “You remembered.” It has always been my go-to flavor. “Blue moon? Or rocky road?” I ask you, referring to yesterday’s choice.
“Maybe,” you say, putting a finger on your chin—another habit you’ve picked up from your mother. “Or lemon custard, or strawberry.”
You hug me again, and how I wish we could stay in this moment forever.
But that wish is insignificant to the others that have been flooding my mind this week. It’s been said that every good parent wants only for his child to be happy. I want happiness for you, but so much more. I want you to not know the pain that awaits you. I want you to roar back at the things that scare you. I want for you a life that is not just happy, but meaningful.
But above all, I want you to embrace the love you find yourself drawn to, whatever that may be. I hope this book will show you that if you can find it in you to push past the fear of loving another person—if you can learn to live with the inevitable loss that comes with doing so—you will know a good and meaningful life.
The week goes by in a blur of sun and laughter and yes, tears. We have ice cream every day and watch the tide rise, recede, and repeat. As you collect rocks and shells at the beach, I stay on the patch of grass that meets the sand. I develop a deep sunburn, which proves to be a pleasant sting; it may well be the last time my skin will be scorched, and there’s no worrying about wrinkles or melanoma now. It is a shame, I think, as Lou and Nora polish off a bottle of wine in the same time it takes for me to nurse half a beer, that I cannot enjoy more destructive pleasures in my current state, when there is no real damage left to be done.
Two days before we are scheduled to return to our various homes and lives, we gather at the shore in front of the cottage.
You can’t push a wheelchair through sand, so Rob, lug that he is, hoists me into his arms and carries me to a set of Adirondack chairs arranged in a semicircle near the shoreline.
My father trails behind him with the BiPAP. After getting me set up, he takes the chair to my right.
Nora is on my left, telling me about the case she will begin working on when she returns to the office next week. Her practicality, her ability to move forward with what she has—these are just a few of the things I love about her. What grace she has demonstrated as she has watched my body give up its fight. What love, to feed me at meals like a mother to a child, only to curl around my body at night as a wife. Keep Nora in your life, Em; she is one of the best parts of me.
Lou is with you at the water’s edge, helping you build—well, I won’t call it a sand castle, because it is more complex than that. You have created a multilevel structure with edges that you scalloped with a clamshell. A foot away, you’ve built a smaller, near-identical building. Both are surrounded by the same deep moat you spent fifteen minutes digging out. Beside you, Lou’s head thrown back in laughter in response to something you just said. She is never happier or more beautiful than when she is with you.
How I will miss her. I still sometimes question my love for her. Where did it come from, and why did it take me so long to let it go, if I really have at all? All I can do is accept that it has woven itself into the fabric of who I am. I could be wrong, but I suspect that the people we are drawn to are the ones we need most, even if we are never able to fully comprehend why. Maybe in Lou, I saw the possibility of you. Maybe in me, she saw you, too, and that became our fate and future.
Rob is standing off to the side, watching the water. Every once in a while he turns to quietly observe you and Lou. Just yesterday, he told me he will be moving back to Michigan before the year is out. He and Lou are dating again—just dating, she says firmly. Yet already I see them old and gray, sitting hand in hand, speaking of the time they were apart as merely a blip on the radar of their lives. In the interim, they could even have a child and give you a sibling. As I told Rob, it’s not too late.
Of course, I don’t know if that will come to pass. You remember what Pascal said about the wonder of life being that anything can happen? That infinite possibility is exactly what makes living so damn heartbreaking. But I believe Rob is a better man and that he still loves Lou, just as she still loves him. And I know he would be good to you.
Even if they don’t come together as a couple, I’m happy to have Rob in your life. He of all people will be able to share with you the parts of my past that I wasn’t able to include here. Surely this book is incomplete in ways, but so it goes. As much as we crave a concise, linear narrative, life happens as it will, often in a haphazard fashion that feels anything but finished. We must cobble together our most important moments and call them our story.
“Daddy, look!” you call, waving to me. You point excitedly at the sand structures you’ve just completed.
It takes everything in me to say, “Good work, Em!” as loud as I’m able, so that you will hear me over the waves breaching the shore.
“You doing all right, son?” my father says. He takes my hand and squeezes it. I don’t squeeze back—I can’t—but I pull my mouth away from my breathing device and say, “Yes.” I take another breath and add, “Love you, Pops.”
“I love you, son,” he
tells me. “I . . . I hope you know I’ve done the best I can.”
I nod. It is not an apology, but it is enough.
After the sun sets—it always disappears below the horizon so quickly, doesn’t it?—I ask to be taken in. Normally I would be ready for bed, but tonight I have Rob and Lou set me up in front of my computer. It is time for me to bring this to an end.
It is almost eerily dark in this barely populated area of Michigan’s northernmost border. But it is the darkness that makes the stars so bright that I can still see them piercing the blackness when I close my eyes. As I stare out the window, trying to absorb the moment before turning back to my computer monitor, I find myself again thinking of my father.
“I’m going to tell you for the last time,” he used to yell at your aunt Victoria and me when we failed to obey him. When we were little, those words frightened us—just as they were intended to. But as we grew older, we came to understand that he didn’t mean what he said. Threats were his way of dealing with us without walloping us upside the head or worse, as his own father had with him. We would screw up again, and we would be yelled at again—if not for the same thing, then for something else. It was never really the last time.
Emerson, this is me telling you for the last time—yet hoping that because I have written it down, it won’t be—that I love you.
To have been placed on this planet with you and your mother at the same time in a universe billions of years old and more vast than we will ever begin to comprehend—this is the gift of my life.
I know, having myself lost a parent too soon, that being without a father will not be easy for you. But try to remember that loss is an incredible stroke of luck.
Yes, luck. For loss carries with it two truths: that you have loved, and that you yourself have had the good fortune to live a little longer.
So try not to grieve me too much. But when you do, take down this book and know that my love endures, and I am with you—
Always.
James Javier Hernandez
September 2, 1972–September 23, 2016
James Bell Logan
Born August 30, 2016
AUTHOR’S NOTE
Though I consulted medical literature and physicians about amyotrophic lateral sclerosis (ALS), the experience detailed in this book is still a fictionalized account and should not be used for reference purposes. For more information, visit the ALS Association at alsa.org.
ACKNOWLEDGMENTS
Danielle Marshall, thank you for believing in this novel when it was still just an idea floating around in my head. I’m incredibly fortunate to call you my editor.
Elisabeth Weed, you’re truly the best. Thanks for sticking with me all these years.
Tiffany Yates Martin, thank you doesn’t begin to cut it; this story owes so much to your guidance.
My deep gratitude to the entire team at Lake Union and Amazon, especially Gabriella Dumpit and Dennelle Catlett.
Michelle Weiner and Creative Artists Agency, a million thanks for championing my work.
Shannon Callahan, I couldn’t have done it without you. Julie Lawson Timmer and Dan Timmer, thank you for your kindness and giving me a place to finish this book. Kristy Barrett, Cynthia D’Amour, Stefanie and Craig Galban, Dee Lamphear and David Gubbini, Jennifer and Jeff Lamb, Laurel and Joe Lambert, Anna and Vince Massey, Stevany and Tim Peters, Alex Ralph, Sara Reistad-Long, Nicole and Matt Sampson, Michelle and Mike Stone, Pam Sullivan, and Darci and Mike Swisher, your support means the world to me.
To my family—the Noes, Lamberts, Lizarribars, Monterossos, Pagáns, Nelson-Pietrzaks, Pietrzaks, and Sunadhars: thank you.
And to JP, Indira, and Xavi, all of my love—always.
READING QUESTIONS FOR BOOK CLUBS
Why do you think James is drawn to Lou? Is it really love at first sight and therefore something he can’t control—or is his love a choice?
How does James’ view of love evolve over time—and why?
James’ mother says to him, “You do what you can with whatever you get.” This viewpoint seems to reflect his friend Wisnewski’s approach to life—which James suspects is the secret to happiness. Do you think he’s right? And do you agree with his mother?
What role do names and nicknames play in this novel?
James says that the difference between love and loss is so slight that it’s almost impossible to perceive. What does he mean by this? And does his fear of loss hold him back from fully loving others, such as Kathryn?
In recalling his affair with Lou, James says, “It was a small series of choices that snowballed into a much bigger decision, which then became an outcome that none of us saw coming.” Do you think this is an accurate recollection of what happened between him and Lou?
At the end of the novel, James tells Emerson she should trust Rob, even though he cheated on Lou: “Rob made many mistakes, as did I. They do not mean he isn’t a good man.” Do our choices make us “good” or “bad”? Why do you think both Rob and James failed the people they most loved?
Why do you think Rob ultimately forgives James? How big of a role does James’ illness play in their reconciliation?
Echoing the opening line of the novel, James later notes, “Every story ends with loss.” Is that true?
What do you think was James’ purpose in writing this book for Emerson?
ABOUT THE AUTHOR
Photo © 2015 Joni Strickfaden
Camille Pagán is the author of the bestselling novel Life and Other Near-Death Experiences, which was recently optioned for film, and the international bestselling novel The Art of Forgetting. Her work has appeared in Forbes; Men’s Health; O, The Oprah Magazine; Real Simple; WebMD.com; and many other publications and websites. She lives in the Midwest with her husband, two children, and too many animals. Visit her at www.camillenoepagan.com.
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