“Mom!” Ally rocks back and forth, staring out her window, whispering to herself.
“Ally,” Lois says, pulling over to the side of Route 51, ignoring horn blasts and screeching tires. After a close call, she pulls into a restaurant parking lot. “Damn it, I’m serious here. You listen to me, young lady. Your dad and I are going to die one day and what do you think will happen to you? Do you think Kevin will take care of you? He can’t even take care of himself!”
Ally’s eyes brim with tears. She’s a grown-up. Her mom can’t keep telling her what to do.
Go to work, Ally.
Go to karaoke, Ally.
Go bowling, Ally.
Go to church, Ally.
“Mom, it’s my money. I won, fair and square. Me. Not you. And I’m…a…I’m…I’m an…” Stuck. “…an adult. I can…c-can make my own…decisions. And I wan-wa-want to help Stryker!”
Lois slaps Ally across the mouth, feeling the edge of her teeth graze her fingertips. She immediately feels the sharp sting of remorse, just as Ally feels the dull blow of embarrassment. But, Lois still burns with the fear of leaving her vulnerable child alone. She has to make Ally understand the gravity of the situation, even though she herself can’t wrap her mind around what an absurd amount of money they have at their disposal. She’s been so used to living a frugal lifestyle that she can’t conceive of an existence where their every material wish would be granted, no matter how much it cost. She does not understand how much money three-hundred-million dollars is.
Her instinct is to hoard it.
All of it.
Or maybe spend some of it on things she thinks they need (but may already have, buried somewhere in her mounds of shit).
“There is no one who can take care of you. Do you understand?”
Ally stares at her, slack-jowled and drooling, one hand covering her red slapped cheek.
“You will be taken away by the state and have to live in some strange place, some hospital or something, with no one to find your earplugs or wash your hair,” Lois yells.
“Mommy—” Ally tries to hug Lois, but Lois is not through talking. Ally feels helpless and unloved. She wants her dad.
“And God help your brother.” She gives a truncated sardonic snort. “He’ll be out sleeping on some park bench, playing his guitar for nickels, or something. I mean, not that you have to worry about him. And your aunts and uncles, they have their hands full with their own lives... But,” she sighs, unsure of what else there is left to say, “come on, don’t you want to buy a nice big house where you can live with all your close friends, where you can all take care of each other, like one big family? Wouldn’t that be nice?” Lois is red-faced and winded, drained and desperate.
And ashamed of herself.
Ally looks at her like a puppy that has peed on the floor.
Lois hugs her then, stroking her hair, crying, imagining a Dickensian future for her orphaned adult children. Lois thinks about what the lawyer said, about having Ally declared mentally incompetent. She is seriously considering doing just that. Of course, Ally would hate her, but it would probably blow over after a couple of years of having so much fun living with her friends in a nice big house. God, what if Lois died during those first couple of years, though? Ally would feel awful if her mother died while she was being stubborn. Lois wouldn’t feel so great, either. She’s got to stop this kid from making a monumental mistake. It’s her duty as a mother, isn’t it?
Ally’s mind spins through years of maternal dictatorship. Of course, she needs her mother. She can’t do everything for herself. But, just once, she wants to do something on her own. Something big. Something that would make her handicapped life really mean something, even if only in her own eyes. No one really knows the depth of Ally’s pain. She doesn’t dare tell anyone anything about it. They might put her in a hospital or something. Maybe her mother is right.
Maybe she is just a dummy who should listen to her mommy.
“Okay, Mom, we can buy a house,” Ally whispers. Her sigh reminds me of a house catching fire. Call it the sound of defeat.
I whisper to Lois to please be cautious.
I whisper to Ally to please, please be strong.
Dejection and resentment can smolder and burn.
12. Anuptaphobia / ə-nupˈ-tə-fōˈ-bē-ə / fear of staying single
“Hello?”
“Ally, honey,” Trish croaks, “please, I need to talk to your mom. It’s Jason…”
Every organ in Ally’s body clenches in terror. Jason. Something is wrong with Jason.
“Mom! It’s Jason! Something’s wrong! Quick!”
Lois trips up the basement stairs and stumbles into the kitchen, knocking a pile of old Sports Illustrated magazines off the table. She looks at Ally’s pale face and snatches the phone from her hand.
They arrive at the hospital twenty minutes later, Lois blanching at the memory of Sylvia’s heart attack. Jason has suffered a seizure. They find Trish in the waiting room, blotting her eyes with a tissue, smearing her mascara. Her husband, Jeff, holds her hand, fighting back his own tears. Jeff stands as the Formans approach. He hugs Lois and Ally and shakes Earl’s hand. Lois sits on the familiar ugly peach and brown sofa next to Trish and holds her.
“Thanks for coming,” Jeff begins, pulling at his greasy brown hair. “They said… they said it was a seizure but that’s all they can tell us right now. They’re running some kind of tests, CT scans or something.” Jeff stifles a sob with his meaty fist.
“Can I see him?” Ally asks no one in particular.
Trish wails.
“No, sweetie,” Jeff answers. “No one can go back there now. They wouldn’t even let me or his mom go in there while he’s having that test.” Jeff hugs Ally, and they all wait, huddled together among the ugly anonymous furniture.
Jason is released from the hospital that night and the news from his doctor comes a few days later. He has developed a seizure disorder as a complication of heart surgery he’d had as an infant. The good news is that they can treat the seizures with medication, but the bad news is that such a condition could lead to its own complications, so he’d have to be monitored.
“Don’t cry, Ally,” Jason tells her when she and Lois stop by the Gibsons’ house on the way home from the store the following day. She brought him his favorite snack, beef jerky. Jerky always gets stuck in his teeth, which makes him cry, but he loves the flavor. A single tear leaks from Ally’s eye as she looks at Jason’s wire-rimmed glasses. He holds her hand as they sit on the couch together while their moms talk in the kitchen. Jason is a kind soul, and he loves Ally more than anyone in the entire world.
“Ally, do you still want to marry me someday?”
She and Jason have been talking about getting married since they were in high school. Their parents always said they could do it if they were ever able to get a place of their own, or a suitable placement in a group home. It hadn’t occurred to Ally that the time had come. She should be ecstatic.
“I was just wondering because now you have all that money, but you don’t talk about getting married anymore. Why?” Jason turns to face her. He can’t figure out why Ally doesn’t love him anymore. He still loves her. A lot. It hurts to think that she doesn’t want to be his wife. He imagined them living in a cozy apartment, eating Doritos and drinking pop whenever they want, maybe getting a puppy, sleeping in the same room. When he thinks of Ally, he feels warm and cozy. He doesn’t even care that she gets stuck a lot and sometimes spits when she talks. He sees her as part of some “normal” future, his ideal.
“Ally, why?” His words pull at her heart, hurting her in some unfamiliar way. But she is preoccupied. It’s not the money or even his illness. Life has changed for her somehow, and she can’t think about marriage. She doesn’t want to hurt him. She looks at her dingy white socks.
“Jason,” she says, not looking at him, “I can’t.” The words burn in her chest. She closes her eyes, takes a deep breath, and turns to face him. �
�If I tell you a secret, will you promise not to tell anyone?” She hardly ever stutters when she talks to Jason. He has a curious calming effect on her. Call it his gift. Her eyes search his. “I have to do something and you can’t ever tell anyone I told you or you might get in trouble. Bad, bad trouble.”
“You know I would do anything for you,” he says, wiping her tear away. He wonders what Ally could do that is so bad.
What she tells him breaks his heart.
Oh, Ally, no, I whisper.
* * *
In the kitchen, Trish weeps as Lois hands her tissue after tissue and doles out hugs.
“Lois, do you remember when you were worried about Ally, and how you might wind up…outliving her?” Trish blows her nose with a loud honk. She sounds like a seal. Lois nods. “I’ve been thinking about that with Jason lately. It’s horrible.” Lois recognizes the insomnia on her friend’s face.
“I know it is,” Lois says, remembering the nights surrounding Ally’s medical tests, when she’d sit up all night, worrying her way to fitful sleep. Nightmares had plagued her, filled with cameos of all the kids she knew—all of them dead. She tried to calm herself by shopping for extraneous material objects, but she could never overcome her anxiety.
Trish sits up straight on her kitchen stool and clears her throat. She needs a nap and a haircut. “Lois, I want to tell you something, okay, and I don’t want you to get upset.”
Lois looks at her with raised eyebrows. “Um, okay. I’ll try to keep cool.”
She waits a long time for Trish to say whatever is on her mind. She takes a guess and thinks it’s going to be something about cleaning up her growing indoor junkyard. Her friends tried their best to accept and even understand Lois’s condition, but they don’t understand. And no one had ever confronted her before.
“You know…you know how Ally has been fighting you on spending her lottery money?” Hmm, not about the mess after all.
Lois still doesn’t like where this is going. “Uh-huh.” She can feel her hoarding instinct kicking in, needling her to save every penny, even if it’s not hers. She feels pain directly in her purse. Her daughter will need that money, forever and ever, amen.
“Well, what have we been talking about here? Life is not forever. And Ally has been feeling so sad lately—I see it on her face every time we get together.” Trish knows that Ally has been depressed, but she thought winning the lottery would have broken her out of that daze by now. “And, Lois, she is such a good person. Why don’t you let her spend some of her money?” Trish’s eyes pleaded with her friend. “Just some. She can still buy the house and the kids will have plenty to run the place for years and years. That is an awful lot of money, you know? I was digging around online, you know, and three hundred million dollars would be like three of those warehouse pallets, stacked chest-high, full of one-hundred dollar bills. Three pallets!”
Even though they are like family, Trish feels funny giving financial advice to her friend, but Jason’s ordeal shook her up and revealed a totally new perspective to her. She reaches for Lois’s hand. “That’s way more money than she’ll ever need. So, why don’t you let her?”
After the initial four-second shock of outrage at her friend’s prying into such personal matters fades, Lois thinks that maybe, just maybe, Trish has a point.
A twinge of guilt pulls at the edge of Lois’s conscience.
The hoarding instinct pulls back.
It is what it is.
13. Pharmacophobia / farmˈ-ə-kō-fōˈbē-ə / fear of medication
“Debra,” Lois gushes, hugging the young woman on her doorstep, “look at you. I haven’t seen you in years!” She holds her at arm’s length and looks her up and down. Debra is Chester Vail’s daughter, the nurse. She’s a little heavier than Lois remembers, but her face is still as square and smiley as it always was.
“Aren’t you going to invite me in? It’s freezing out here,” Debra says, laughing.
The two women go inside and sit in the family room, talking over a cup of hot tea. Debra’s eyes are drawn to the towering stacks of newspapers and magazines that crowd the room. Whenever Lois looks away from her, she gapes at the bulging bookcases and the dining room table heaped with papers and boxes. She wonders about Lois’s sanity, but she covers her face with a smile so as not to let on. Like everyone else who knows the Formans, Debra wonders how four adults live in the over-crowded unsanitary mess. Their home is bursting at the seams with junk and garbage. As a young psychiatric nurse, Debra had seen hoarding behavior before. She feels sorry for Lois, knowing that she is probably ashamed of the mess, ashamed because she doesn’t know how to begin cleaning it up even if she wants to.
Lois tells Debra about the house Ally is about to buy for the Cool People and how they are looking for a nurse to look after the six young adults who will be living there. Debra loves the idea of looking after Ally—Ally’s grandfather had been Debra’s father’s best friend for many years and their families were close for a long time. In fact, Lois had babysat Little Deb many times back when Lois was a young teenager. The only reservation on Debra’s part, regarding the group home, is that she doesn’t have much experience with Down syndrome. She is more than willing to learn what she needs to know in order to care for them, but she isn’t sure that she would be comfortable assuming sole responsibility as soon as Lois might want her to.
“I think we can get someone to help you out for as long as you need, but what I’m looking for from you is a commitment. I want to know that you’ll be there when I can’t be.” She didn’t come right out and say “when I die,” but Debra knew what she meant.
“Well, that is no trouble at all,” she says. She isn’t married and has no children, and the house is in a wonderful neighborhood, so Debra thinks it would be the perfect situation. “Where is Ally? I’d like to see that lucky girl.”
* * *
Ally heard her mother let the nurse in, but by the time they come looking for her, she is on the precipice of consciousness.
At first, she only notices her heart beating kind of fast. The pace of a trotting horse.
A bead of sweat rolls out of her hairline and drips off her pug nose. She lies down, rolls onto her side, and focuses on her Stryker Nash posters. The tears in her eyes blur his perfect physique into a fuzzy sea star. Her heart picks up its already surging rhythm. It makes her think of some techno song her brother likes.
She’ll miss Kevin. He sure teased her a lot, but she knows that deep down, somewhere in his gentle tattooed heart, he treasures her. She knows because he always left her mushy birthday and holiday cards under her pillow, giving her funny and rude ones to open in public. One time, he’d beaten up a mean boy who lived down the block after the boy had pushed Ally down and called her a retard. That seems like ages ago. She loves Kevin and she hopes he knows.
She loves Jason, too. Jason, who promised not to tell. She wonders what will happen to him. She wonders if he’ll be sad. Not ordinary sad, but sad the way she’d been since Stryker got canned. She wonders if he’ll go on dates with Mara and forget all about her. She wonders if his seizures will get better. She hopes he will be happy and live a long time. She hopes her mom will give him some of her money.
Her mom doesn’t understand. Her mom always wants to be in control of everything. She didn’t win the money, Ally did. Ally doesn’t hate her. She loves her very much. But, she can’t live with not being able to do anything she wants. What good is being rich if you can’t do anything you want with the money, even if that anything was helping someone you love? No, Lois does not understand. Ally hopes she knows that she loves her, though. And her daddy, too. She’ll miss him the most. They took very good care of her. She can’t imagine what her life would have been like without them. She wishes she were able to write them a note, but she has never been good at writing. She can never find the right words.
While those with Down syndrome suffer a higher rate of mental illness, very few actually attempt suicide. Some say it’s becaus
e those Dear Ones don’t connect the cessation of bad feelings with the ending of their lives. Those who do try it are usually mildly retarded, like Ally—they work regular jobs, attend social functions, and strive to be “normal.” Caught between worlds, severe depression is their reward for almost making it to ordinary.
Oh, Ally.
She wanted so badly to make her own adult decisions that she’d chosen to make one final and irrevocable bad one.
Vomit silently works its way out of the corner of her open lips and she begins to shake. She wonders if this was how Jason felt when he had that seizure. She loves Jason. She loves everyone. She is sorry. The empty pill bottle falls on its side, mirroring her own posture. Twenty-six Effexor XR capsules swim in the acid of Ally’s churning stomach. The gelatin capsules dissolve, releasing a flood of venlafaxine hydrochloride, cellulose, ethylcellulose, hypromellose, iron oxide, and titanium dioxide into her digestive system. The chemicals work their way into her bloodstream, triggering explosive reactions in her brain, liver, kidneys. The world whirls around Ally as imaginary shadows and sparks play across her dimming field of vision.
She wonders if there is a God. She wonders if she will go to Hell.
I whisper urgently for her to be strong, but she won’t listen.
She tells me to be quiet. Fucking oppositional behavior. I am angrier than I’ve ever been.
I have no choice.
I tell her mother.
And you wonder where my faith in the human race has gone.
Stop doing stupid shit like this, people!
* * *
Lois mounts the steps. “She’s in her room,” she tells Debra. “I’ll go get her. She’ll be so excited to see you.” She picks her way up the steps, through a channel of boxes and stacks of paper and brand new clothes, tags still attached, feeling Debra’s pitiful gaze following her.
She gets the distinct feeling that something is wrong, something bad is happening. Call it a mother’s intuition.
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