Life Happens Next (10 page)

“Take it easy, Paul,” Mom says.

Paul says, “I'm not gonna hurt him, Mom, but he needs to obey.”

Paul walks through the kitchen and into the living room. I can hear him clearly because Rusty's whining gets softer, almost like whimpering, as Paul approaches.

“Rusty, come,” Paul commands again. From my spot in my wheelchair in the kitchen, I don't hear Rusty's claws clacking on the hardwood floor.

Paul says, “Debi, what's up? Why's your dog so—” He stops in mid-sentence. “Debi?” Paul speaks her name in a totally different tone of voice, soft, and now again in that same tone, “Debi? You okay?” There is another brief pause.

“Mom, come here. Hurry.” Paul sounds scared.

I snap to full attention.

“Mom,” Paul cries again.

Mom and Cindy both hurry to the living room, and I hear Mom, her voice as scared and worried as Paul's, “Debi … Debi darling … Debi.”

Cindy says, “Oh God, is she—”

Mom ignores Cindy and says to Paul, “Help me get Debi down onto the floor.”

Rusty barks, frantic, terrified, threatening barks.

Paul says, “No, Rusty, sit—
sit
. Cindy, grab his collar and hold him back.”

I hear a soft thump sound and Mom saying all the time, “Debi … Debi … sweetie …” She says, “Paul, call 911. I'll try CPR.”

Paul hurries back to the kitchen. He picks up the phone and pushes the buttons. His face is pale and his hand holding the phone seems to be quivering. In a matter of seconds he speaks. “Our … our cousin is unconscious … I think she's … we need an ambulance....” He listens for a few moments and calls, “Mom, can you feel a pulse?”

Mom yells back, “No.”

Paul continues talking to the 911 person, tells his name, our address. I hear all his words, but none of them matter much. I'm worried about Debi.

Mom continues doing CPR.

Paul, after hanging up the phone, goes back and holds on to Rusty. Paul whispers, “It's okay, buddy, it's okay,” but Rusty keeps whining.

The ambulance arrives a few minutes later, along with a fire engine and several police cars. The paramedics quickly check Debi's vitals and take over the CPR.

After what seems like a long time, one of the paramedics finally says to his partner, “She's flat-lined.”

“Yep,” says the other one. “You wanna call it?”

“Yeah. Cardiac arrest, I bet. So many Down syndrome patients go this way.”

The other paramedic stands and turns to my family, who are all watching from the doorway. “I'm sorry,” he says, “she's gone.”

“Gone?”

He means Debi is dead.

T
he following Saturday, I do not go to Debi's funeral. The rest of my family—even Dad, who only met Debi once—is there. I am at home with a caregiver who has parked me in front of the window while she watches TV. I try to force myself not to feel angry, but I am. I know everyone thinks I'm a veg, and usually I can handle that. But not today.

I try to rationalize, talk myself down. Nobody believes I have a brain inside me that connects to my heart. Nobody knows that I understand anything about anything—only Debi knew that. So why would someone drag my wheelchair across the soggy grass of a cemetery just so that I can sit next to a hole in the ground as Debi is laid to rest in her grave, like I've seen on TV funerals a million times? If I have no brain, I can't grieve. Right? If I have no understanding of anything, why should I be someplace where everyone else is sad?

But these rationalizations don't help much today. I am angry that Debi died. I am mad that I don't get to say goodbye, even in my own way, even if no one knows I'm saying it except me. I'm upset that other people can make such important decisions for me, and that they have no way of knowing that I am
not
utterly, incalculably, irretrievably stupid. They don't know how sad I feel.

Debi understood the way my heart and brain work; she understood my life,
me
, better than anyone else ever has.

Rusty didn't get to go to the funeral either. All morning long he whines and whimpers, and walks back and forth in front of my wheelchair. Finally he sits down at my feet and stares at me. He lifts his paw gently into my lap, leaves it there awhile, then takes it away and rubs his body against my legs. I'm sure he's leaving tons of dog hair all over me, but I don't care, because let's be honest, I'm not much of a fashion king anyway.

Tears roll down my cheeks—it feels good and awful and painful all at the same time.

The reception following Debi's service is here at the house. Mom and Cindy and Paul get home first, followed only a few minutes later by Dad. Mrs. Pearson, Debi's caseworker who brought her here for that first visit, and Jack Yurrik, who brought Rusty, soon arrive. Rusty is banished to the backyard as people I've never met begin to trickle in.

Many of these people are classmates from Debi's Learning Skills Program. They walk right past me with shoulders slumped, some with mouths agape. Several of the men wear neckties with huge, awkward-looking knots, and a number of the ladies are in inappropriate dresses, pink or bright sunflower yellow or faded prints. And all these special needs guests wear shoes that are held on their feet with Velcro straps, just like Debi's used to be, just like mine still are.

A number of Debi's friends from “schoo” surround the food in the dining room and load up their plates. A few of them jibber-jabber on, while others stand quietly, looking confused as they eat and avoid conversations.

There is little talk of Debi. Sitting in my wheelchair in my regular spot, I listen for anyone to say something kind or caring or even some neutral comment about Debi's life.

No one does.

W
hen the last of the guests is gone, Paul brings Rusty back into the house. Since Debi's death, Rusty has been more subdued. When Rusty and Paul used to play, Rusty would get this excited look in his eyes. And I swear his mouth would curl up just like he was grinning from ear to ear. Since Debi's been gone, I haven't seen Rusty smile once.

Cindy starts carrying little plates and silverware to the sink, and Mom begins rinsing them and loading them into the dishwasher.

Paul asks, “How can I help?”

Mom answers, “When Cindy is through cleaning up, will you put the folding chairs back in the storage room downstairs?” Mom's voice sounds so sad, tired, and beaten.

“Sure,” Paul says, sitting in the dining room and petting Rusty, who lies at his feet nudging up against him.

After a moment, Cindy says, “I guess that was a nice service, but—”

“But what?” Mom asks.

At first Cindy hesitates. “I don't know how to say it, but somehow it's like Debi passing away isn't as sad as when someone normal dies. I know this sounds mean, I just—I don't know how to put it.”

Paul says, “I know. It's weird. I guess when you think about her life, you have to wonder, what more was there for her to do?”

Mom turns off the faucet and pauses. Paul looks worried for a moment.

“Mom, are we awful?” he asks.

“No,” Mom answers. “Maybe what you are saying could be twisted to sound heartless, but I know that's not how you mean it.” Mom motions Cindy and Paul to come closer. “None of us like to think about it, or acknowledge it, but we live in a world, a society anyway, that gives a material value to everything and everybody. How much money do you make? How rich and famous are you? We put a value on everyone's life and thus on everyone's death.”

Paul says, “I know. It's such bull. Pro sports figures and movie stars get paid huge bucks, and everyone treats the rich and famous like they're better than everyone else.”

Cindy says, “Not everyone who is famous is rich and glamorous.”

Paul looks at Cindy and waits for her to explain.

Cindy says, “I Googled ‘Shawn McDaniel' the other day.”

Paul smiles. “How'd the big boy do?”

Cindy says, “For just Shawn McDaniel, 4,770,000. For Shawn McDaniel and the word poetry, 310,000 and for ‘Shawn McDaniel' in quotes and the name of Dad's book,
Shawn
, 119,800.”

Paul says, “Not too shabby.”

Cindy says, “I know—thanks to Dad's poem, Shawn's famous.”

Mom adds, “Your brother being born brain injured led your dad to write his story. And his book has changed so many people's attitudes and feelings toward kids like Shawn.”

Paul interjects, “And made Dad a rich big shot.”

Mom says, “Your dad would trade everything for your brother to be okay.”

Paul doesn't hesitate. “I know.”

Sitting in my wheelchair across the room, listening to all of this, I know that everything they are saying is true. Except the part about my Google fame. Maybe thousands, tens of thousands, even millions of people know my name, know that I exist. Maybe they even think they know me through reading my dad's writings about me. But they don't know who I am, or even that I'm really in here. Sure, my being born brain damaged, and my dad writing about it, changed a lot of peoples' attitudes toward kids like me. But the only person who has ever really known me was Debi.

A
ll my efforts to understand and rationalize to myself why my life is worthwhile, all my Gee-Ain't-Life-Grand Cool Things About Being ME, seem so stupid right now. As idiotic as thinking I was in love with Ally. As crazy as thinking anyone could truly connect with me.

In addition to missing the funeral, I never got to go near Debi before they covered her up and lifted her onto a gurney and rolled her away. I didn't get to look at her, or say good-bye. She is the first dead person I've ever known. I mean, the first person I knew who had been alive but now is dead. Even my grandparents are still living, although I hardly ever see them.

I can't shake my feeling of sadness. But it's even more than that—more like hopelessness.

Crackle-crackle-crackle
… I feel a seizure coming on. A soft laugh comes out as electrical current pulses through my head. I choke a little, gasping and gagging as the muscles in my throat tighten, constricting my breathing—here I go again....

I am sitting in a room, the same empty room where I last saw the dark figure. This time the room is bright and I feel comfortable. There are two chairs, the one on which I'm sitting and an empty one directly across from me. A door opens, and for a second or two no one steps through it. But now the dark figure comes into the room. I've never seen her this close before. I can almost see her features, her face.

“Hi,” I say.

“Hello,” I hear back from her. A familiar female voice, though I can't quite place it.

“Nice to finally meet you,” I say.

“You've known me all along,” she answers, a soft laugh in her words.

“I'm Shawn,” I say in my mind to her.

She answers, “Yes, Shawn.”

Just as I'm ready to ask, “What's your name?” the figure laughs again and throws off her darkness, sitting down in the chair right across from me. There is a glow, a shimmering outline all around her. I can't believe what I'm seeing, feeling, thinking,
knowing
.

“Debi?” I ask.

“Yes, Shawn,” she says again. Not “yeth,” not “S-S-S-Swan,” but “Yes, Shawn,” clear and happy, her voice full of joy.

I
stare into Debi's eyes and she looks back—we don't speak, we don't need to, as I can feel her thoughts and I know she feels mine.

I wonder, why did I see Debi as a dark figure before? I realize that maybe it wasn't Debi that was the dark figure at all—no, not maybe, it definitely wasn't. It was my sense of her, my thoughts about who she was then. Debi had no meanness in her, no cruelty, no darkness, I supplied all of that.

I think about Debi dying yet being here with me now. I wonder, what difference does it make whether she is dead or alive. I start to answer, “All the difference in the world,” but I stop myself. I don't know the answer to this—maybe nobody does. None of us know what happens when we leave our bodies behind. But our spirits are the purest parts of ourselves; alive, dead, good, bad, one chromosome too many or a few too few, these matters don't matter to your soul. Like everyone else, I tell myself what is real and what isn't. I use words like
life
,
death
,
heaven
,
hell
, talking as if I knew what these things are, but none of us
really
know—

Now a larger thought overwhelms me. Not just a thought—a feeling, a hope, something more important than anything else: I'm alive, and I'm here to learn, to live and to know and to be known. I think maybe that's what love is all about, and it's all that matters.

All these thoughts have come at once, in the length of two heartbeats. Debi still sits across from me, sharing all of it. I want to ask her how she likes the freedom of leaving her body behind, a freedom I've treasured so much for so long.