Mom says, “Well, you guys have a nice chat.” She leaves the room.
Debi is silent again for a while. At last she speaks. “Wusty ’n’ me love you, S-S-S-Swan.”
“Thanks,” I think.
Debi says, louder than she has been speaking, “See you soon, S-S-S-Swan.”
I wish I could nod my head and say, “Okay,” but I can’t. And, truthfully, I don’t understand what Debi’s trying to say. Doesn’t she see me right now? She’ll see me soon? What does she mean?
25
Okay, let’s get real, and this is not me going into whiner mode again, it’s just stating simple facts: I’ll never graduate from high school, not really. Special education students at my level of disability don’t actually finish required classes, but we get to hang around until we reach twenty-one, and then, whether we’ve learned anything or not, we have to leave. I’ll never have a first love affair, first time driving a car, first time getting drunk, first time—anything. I won’t go to college. I won’t sky dive. I won’t become a gourmet cook. I won’t get married and have kids and argue with my wife. I won’t get a job. Or get fired from a job. Or buy a house. Or move anyplace cool or move anyplace not cool, anytime ever. At least not until Mom dies or gets too sick or too old to take care of me anymore. And then I suppose I’ll be sent somewhere else to live. Like Debi was sent to us. What will happen to me is whatever life brings next. And in this way, I’m like everyone else.
But here’s something I’ve also figured out. Maybe my ideas about being known and knowing others are a little bit off. I thought I knew Rusty. I thought I knew Debi. I wasn’t even close. I know that I’m smart. Debi is supposedly stupid and Rusty’s a dog. Yet they both figured me out. Maybe it’s because this whole business of knowing someone and being known by them is different than I’ve thought. Maybe my assumptions based on how “normal” people, even my own family, treat me have led me down the wrong path. There’s a lot I still don’t know. But if Debi and Rusty and I can all connect more deeply, what does that say about how we can connect with everyone else?
It’s been a while since Debi told me she knows I’m smart. Now, whenever I see her sitting and staring, I know what’s really going on. She is gathering info about Mom, Cindy, Paul, and Ally. It’s amazing to feel understood by her and to want to understand her in return.
I’m sitting in my regular spot in my wheelchair by the window when a seagull flies past, low, gliding. It’s dark gray, with hardly any speckles at all. Watching it, I think about how much this seagull’s gliding flight reminds me of when my spirit escapes my body. I start to think, “Maybe someday after I die, I’ll get to come back as a seagull, a beautiful, gray ghost bird soaring.” I laugh inside my mind, thinking, “No, given my luck, I’ll probably return as a fly or cockroach.”
Debi, who is across the room, laughs. She says, “S-S-S-Swan funny.”
Mom asks Debi, “You mean Shawn’s arms?”
Debi says, “He funny.”
Mom says, “Shawn’s arm movements just happen to him sometimes—he doesn’t do it to be funny.”
“No,” Debi insists. “He funny inside … good funny.”
Mom nods.
Arm movements? I didn’t realize that my arms were moving, flopping about like wings trying to lift me up as I was thinking about flying. I had never put the two things together, that my body was actually working in connection with my brain.
Debi says; “S-S-S-Swan funny lotta times … funny t’ings inside.”
Mom asks, “You mean you have funny thoughts about Shawn?”
I scream silently, “No, Mom, inside ME! Debi means that my thoughts are funny, things that I think about, that’s what she is saying! She understands me!”
Debi smiles but remains silent. Mom doesn’t say anything more either.
Debi has changed things for our whole family. Despite her handicaps, or maybe because of them, she shows us daily that her feelings and thoughts are real. It’s not that Debi loves me more than Mom or Cindy or Paul do. She simply has time to focus, while others, so-called normal people, are always rushing about and tend to see things only on the surface.
It’s not that the other people in my life are self-absorbed. They aren’t—my mom especially. But they’ve simply never been trapped in their own bodies. They’ve never been seen by everyone else as unaware and lost in themselves. From their perspective, there isn’t much reason to believe that I’m highly functioning in here. But what if Mom and Cindy and Paul—anyone who is paying attention—could see my wheels turning for just a moment from a look in my eyes, or wonder if my arm movement might be connected to something I was thinking? I wonder what they’d feel. I know this probably won’t ever happen.... Then again, never say never.
26
I am lying in my bed, waiting for Mom to come get me up. It’s Sunday morning, so there’s no big rush to feed, bathe, and dress me.
A seizure starts. I relax and let it carry me away.
I arrive in a room, an unfamiliar room, and in the dark shadows of the corner is the figure, the one who keeps showing up in my dreams. The figure has no clear outline of the body, as if it’s wearing a cloak or huge coat made of darkness, but for the first time I sense that this figure is a woman. She is not menacing. I don’t believe she means me any harm. It’s hard to explain, but since she has joined me, I’ve been pulled away from the absolute freedom I’ve had in my dream and spirit journeys. At first I was scared, then frustrated. Now I’m not angry or sad or even confused. Maybe excited. I think she has a purpose. I just don’t know what it is. If she wanted to hurt me, she’d have done it by now. If she doesn’t care about me, why does she keep coming back? I’m not scared of her anymore.
I ask, “Who are you? Why are you showing up in my world?”
She stays silent. But that’s going to change. After all, these are my dreams, my spirit travels, and I have a right to know what’s going on.
27
It’s the next morning, Monday. Something weird is happening, something different. I feel it under my skin, a strange tingly feeling—I can’t explain it, but something is off.
For one thing, Rusty acts as crazy as he did the first day he came here.
Debi finished making her lunch and putting the dishes from the dishwasher away sooner than normal and went to sit on the bench and wait for her bus. Maybe she didn’t give Rusty his regular morning treat? If that’s what his nutty behavior is about, this dog better plan on a visit to the Betty Ford Doggy Addiction Clinic for Milk-Bone Junkies, because he’s driving me crazy.
Rusty sits right in front of Debi, barking and whining. Mom calls, “Hey, Debi, tell Rusty to cool it.”
Debi doesn’t answer. Nothing new.
Mom yells a bit louder, “Rusty, hush! Debi, pay attention please!” Still no answer from Debi.
Seriously Debi, do you have eardrums of steel? She must be in one of her zones.
“Paul,” Mom calls, “will you get Rusty? I need some peace and quiet.”
Paul brings a heaping tablespoon full of Honey Nut Cheerios to his mouth and while chewing yells, “Rusty, come here.”
Rusty ignores Paul and keeps barking.
Paul looks up, stops eating, and commands “Rusty, knock it off. Come!”
Rusty stops barking but continues to whine and still doesn’t come to Paul.
“Dammit,” Paul snaps, dropping his spoon so that it clanks loudly as it hits the side of his bowl. He gets up from the table.
“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.
28
The 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.
29
When 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.
30
All 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.
Life Happens Next Page 7
