I am not going to make this nice. Nor will I purposely make it mean. I am just going to tell you how it feels to have Richard and Ann as my brother and sister.
There were six of us: my older brother David and me, followed by Richard and Ann, and finally Karen and Melvin. At the age of two, Richard got a high fever and screamed all night about the “spiders on the wall.” He finally fell asleep, and when he woke up, he was diminished. If his mind had been the earth, then one whole continent would have been submerged, like Atlantis, and all its treasures lost.
Ann was born two years after Richard, delivered in the hallway of the hospital by nonmedical personnel. During her delivery, she didn’t get enough oxygen, and part of her brain was lost, as well.
Imagine the seismic repercussions of having one retarded sibling; then double that. “Retarded” — that’s what we called them, my normal brothers and sister and I. That’s the word we were given. I have written about Richard and Ann before — with enough compassion, I hope, to win some compassion for them. But this one is for me.
It’s Richard’s turn to choose where we’ll eat. He always picks the same Italian restaurant, though after tonight we won’t return here again. Candles flicker in bubbled-glass holders. The tablecloths are checkered red and white. Even the painted murals are predictable: seascapes, vineyards, colorful peasants. This doesn’t bother me. The more I age, the more I embrace the predictable, precisely because so little in life is.
My husband, Frank, and I sit on one side of the table, Richard and Ann on the other. The waitress has left a basket of bread for us. My brother and sister both cough as they eat, and Frank and I position our menus to deflect flying food particles, fortifying our position with the napkin holder, the candle, the flower arrangement. We take possession of the bread and hand my brother and sister pieces over the barricade. Every time one or the other of them coughs, my husband whispers, “Incoming.” Soon the waitress will take our menus away; it will be difficult to eat our linguine with clam sauce or eggplant parmigiana unprotected.
Richard is fifty; Ann, forty-eight. They look older, marked by the cumulative ravages of disadvantage. Both have smoked heavily since they were teenagers, and their skin is webbed like the rind of a cantaloupe. For them, smoking is an activity that fills the day, and one of the few needs that they can satisfy themselves. They can buy cigarettes and light them, which provides a sense of self-sufficiency. Richard has asthma, and Ann is in the early stages of emphysema. That is why they cough so much.
When giving instructions about oxygen masks, flight attendants always tell you that if you are traveling with a child, you should put on your mask first, then put on the child’s. In a similar way, I have to care for myself before I can care for my brother and sister. Sometimes I have to buy glittery pieces of jewelry to finger like a rosary. When I go to pick up Richard from his group home and Ann from her apartment, I always arm myself with a CD so that I can choose which to listen to: the singer’s pain, or theirs. Richard once told me that in high school he used to stand by the door of his classroom and wait for the bell. When it rang, he would run to the hallways outside the normal classes, then walk casually. That way, he explained, no one would suspect he was in the special class. As he told me this, my mind reached out for the music and seized Van Morrison: “I want to rock your gypsy soul / just like way back in the days of old / and together we will flow / into the mystic.”
When I go out to dinner with Richard and Ann or cook for them, I self-medicate with a good Chianti. As a result, I’m often mildly hung over the next day. Sometimes I let the answering machine take their calls, buying myself another hour, another day, of distance.
All this makes me sound selfish. I have had to make room for this selfishness inside me, to accept the fact that alongside the Sue who cares deeply, grieves excessively, and fights fiercely for her siblings is the Sue who seethes beneath her horsehair shirt. People like Mother Teresa must practice selflessness until there is no self left to practice on. The food they put into another’s mouth nourishes them — at least, that’s how Marilyn Krysl tells it in her poem “Famine Relief”:
Explain, please, this wonder, this creaturous pleasure, this ruby of feeling while I feed another being: tell me why when Hasina opens her mouth, it’s as though the world in its entirety opens, . . . . . . To feed another being is like eating: both of us filling ourselves with the certainty that there is, in us and around us, kindness so infinite that we cannot be lonely.
I want that ruby of feeling, that belief in infinite kindness, but the truth is I am far from sainthood. There are times when I can’t even bear to look at my brother and sister while they are eating.
No one here in Ciao Bella is normal — or everyone is. The waitress is too heavy for her own good; through a small window into the kitchen, I see her chowing down on an ice-cream bar. The couple beside us is mismatched, the woman much older than the man. (My husband says you can tell a woman’s age by her hands. I believe I was born with old hands, though. Sometimes I think I see something crawling up my wrist, but it’s only my veins.) At another table sit two women with five children between them; the children look fatherless, dependent on their mothers’ meager resources. Where are the husbands? Everyone’s got a story. People, particularly the waitress, stare at us. They want ours.
When our salads arrive, the waitress seems overly solicitous — or is she smirky? I’ve already finished my first glass of wine, so I have trouble reading her intentions. Richard doesn’t have much use for fruit (except bananas), vegetables (except French fries), or salads; it is the blue-cheese dressing that he wants. He has become increasingly inactive over the years, partly because of the medications he takes. His poor eating habits and lack of exercise have made him huge. Aside from smoking, eating is his favorite activity. He greedily sucks up the blue cheese and reluctantly chews the greens. He no longer fits comfortably into belted pants, preferring sweat pants or shorts with an elastic waist. Whenever he sits down, you can see his ass crack. I’ve become intimately familiar with the paw-shaped birthmark on his left butt cheek. Once, angry and embarrassed, I yelled at him not to wear his pants “down around your dick.” Later, I felt bad. I’m sure he felt bad, too. But he still wears his pants that way.
My husband makes things more bearable with his humor and kindness. Once, when we were dating, he took my younger brothers and sisters and me to the beach. A sudden and vicious riptide pulled my siblings under and dragged me out to sea. After I swam out of the rip, I saw Frank on the shore with Richard under one arm and Ann under the other. He had already rescued the two youngest and sent the lifeguard after me. That moment alone should have taught me about his character, but it took me many more years to appreciate it. He often cuts Richard’s unkempt, dandruff-ridden hair and helps him with his hygiene. One hot summer day, Richard came home with blood spots on his tennis shoes: his toenails had grown so long they were cutting into the neighboring toes. I can still see Frank bent over Richard’s feet on the back patio, sweat dripping from his hair, trimming those hideous outcroppings.
Ann is not as big as Richard, but she’s getting there. She wears oversized men’s clothing and eight or nine necklaces. She takes antidepressants, and the charms that dangle from her necklaces are talismans against depression: leaping dolphins, smiling suns, silver crosses, quarter moons, rainbows. Every year, the bags around her eyes get heavier. Sometimes I think it’s because she doesn’t drink enough water — she is addicted to soda. Other times I think it’s just the weight of the world. Ann tested lower than Richard on IQ tests, but Richard developed schizophrenia when he was a teenager, so Ann is considered higher-functioning. She is able, with our help and the help of Social Services, to live independently — though hers is a fragile independence. Recently Ann mailed out checks from a closed account. Her reason: “I didn’t want to waste any checks; they cost money.”
But here I am talking about them again when it’s me I want to talk about: One long cry of self-pity. One lengthy demand to be witnessed. What I really want is for someone else to take my place. Or, if it has to be me, I want to be superhuman. I want not simply to adjust my brother’s pants or my sister’s water intake; I want to enable them to taste their food, drive a car, tell a joke, fall in love. I want to give them friends who’ll make them feel interesting and interest them in the larger world.
I hate it when people say, “What doesn’t kill you makes you stronger.” Who wants to be stronger? Who wants to fortify him- or herself only to endure another blow? Give me crying jags and medications. Give me a rocking chair and news like jello that slides down my throat with ease. Give me dollops of hope. Tell me about utopias or distant countries — Sweden or Switzerland — where vitamins, or seafood diets, or experimental therapies resurrect dead brain cells. Don’t give me disgusting platitudes that reward martyrdom. I want to cry over spilled milk.
When the waitress clears the salad plates, Richard, in his eagerness to be helpful, knocks over his soda. The tablecloth has to be changed. He is too apologetic, but I love him for his politeness, his sincerity. The waitress leaves in a huff, taking my half-eaten salad with her as a kind of punishment.
Richard and Ann have helped shape my personality. One thing they have given me is free-floating anger: I want someone to blame — for everything. Right now, my anger has attached itself to our waitress.
Richard and Ann were once beautiful. You might doubt my opinion on this because I am too close to them, but they were both blessed with good features, clear skin, wavy hair, and bright blue eyes. They were tall and thin as teenagers. Richard had straw-colored hair and skin that tanned beautifully. Ann had a touch of red in her hair and a light sprinkling of freckles. They used to have hobbies, passions. Richard raised pigeons and was the billiards champion at the Boys Club. Ann wanted to be a rock star and tried her hand at various instruments. Beneath their melon-rind skin, you can still discern comely features.
It’s not just their outer selves that have changed, but their inner selves as well. Living in the world as handicapped people has taken its toll on Richard and Ann. They have had to learn to fend for themselves, to become calculating, selfish, manipulative. When I go to pick them up, they have already made their mental wish lists. Their desires start with new toothbrushes and end with trips to Disneyland. It’s as if they were trained negotiators: they know to ask for more than I can possibly give in order to ensure that they get what they really want.
And they’ve lost something else in their sojourn on this earth: joy. Sometimes they can briefly recapture it. When Ann recently returned from a weeklong visit with our sister in New Hampshire, she was filled with new ideas, experiences, colors, songs; she giggled spontaneously for several days afterward. She wanted to paint her bedroom a vibrant mustard yellow and decorate with deep blue accents. In her musical taste, she’d graduated from Bon Jovi to Lucinda Williams. But too soon the world came knocking: the ongoing absence of her deceased dog, the social worker who sought to cut her hours with Ann, the neighbors’ critical stares. Eventually, only the sun on the silver chain still smiled.
When our dinner arrives, Ann says, “This isn’t what I ordered.”
I’m embarrassed because I know that it is what she ordered.
The waitress is curt: “You ordered fettuccine Alfredo; this is fettuccine Alfredo.”
Later, Ann tells me it’s not like the kind she cooks in the microwave at home. I contemplate getting back at the waitress by telling her my food is too cold or too spicy, but I’m worried she’ll spit in it in the kitchen. Besides, the tomato sauce is steamy and chunky, and the mozzarella is melted just right. In spite of everything, I am hungry. We all cut Ann a portion of our food and ask the waitress for another basket of bread.
I can’t say people are intentionally cruel to Richard and Ann. Children seem to be afraid of Richard, because he’s so big and looks so odd. Even dogs chase him, which discourages him from walking. The value my brother and sister place on the simplest kindnesses tells me that people rarely grant them any. If someone greets Ann more than once when she is out walking, she counts that person as a friend. When a grocery checker speaks to Richard in a friendly way, he reports it as if it were a phenomenal event.
Richard and Ann go outside to have a smoke before dessert. As Richard stands up, his ass crack reveals itself to the waitress. For a second I want to scream at them for lumbering around in their big bodies, for making themselves, and us, vulnerable to ridicule. The better part of me wishes I could stop them from smoking, prolong their lives. But the selfish part is glad they have gone outside to smoke, leaving Frank and me to relax and finish our meal in peace.
Before Richard became so fat, my parents used to call him a bottomless pit and joke about getting him into the Guinness Book of World Records for his ability to consume massive quantities of pancakes and whole pizzas. What truly belongs in the Guinness Book of World Records is the number of drugs Richard is on. Every day he takes docusate sodium, Serentil, benztropine, Aricept, Protonix, and Clozaril. He also takes lorazepam as needed for anxiety, and an injection of Depo-Provera once a week, to suppress his sex drive. Almost all of the drugs’ labels warn, WILL CAUSE DROWSINESS. This is the state’s idea of therapy: stone them out on drugs; let them catnap their lives away until their livers give out.
If someone tried to murder Richard, I’d do whatever I could to save him. But someone is murdering him, slowly. You can’t take that many drugs without incurring numerous side effects. The good Sue in me says, If I just took Richard home to live with me, I could extend his life, and improve the quality of it as well. As it is, when he stays with me overnight, I throw half of his meds in the trash, supplement his meals with vitamins, make him delectable fruit salads, and take him for walks. Together we could build a health regimen, I’m sure. He will never be normal, but he could be better. This is the only life he has.
The selfish Sue fingers the silvery bijou around her neck and says, This is my only life. If I bring him home it will cost me everything: my time, my money, my happiness. I will have to see his ass crack and clean the area around the toilet constantly.
Frank and I take Richard and Ann out every three weeks and do things for them regularly. Sometimes their needs arise all at once and supersede ours. If that fever had not struck, if a doctor had been present at that delivery, then everything might have been different. Richard, with his love for animals, might have become a veterinarian. Ann, with her search for the ideal arrangement of furniture, might have been an interior decorator. In this other life, I, too, might have been something more grand. At the very least, I would have had more time to write. My husband and I would have had more time for ourselves, and more money. We could even have contemplated going away for the holidays. How easily we might have picked up and moved to the country to retire.
By the time the waitress brings the check, our plates are picked as clean as a Thanksgiving turkey. Richard has even eaten Ann’s fettuccine. Barely able to contain her amusement at our appetites, the waitress asks if we would like anything more. I watch her go back and report to her cohort about our gluttony — while she fishes another ice-cream bar out of the freezer. On my way to the bathroom, I pass within a few feet of the kitchen, and I think I hear her use the word animals.
Usually we leave a large tip, knowing that we make for extra work, but this time I ask my husband to leave a tiny tip, an insulting tip. On the way out I say to the waitress, “Why don’t you go eat another ice-cream bar.” Afterward, of course, I feel terrible.
Krysl’s poem “Famine Relief” ultimately takes the problem of hunger to a higher political and spiritual level, proposing that inequality is spread throughout the world for a purpose: “so that we may know hunger, / so that we may learn / to feed each other.”
I wish it were easy to learn to feed Richard and Ann’s hunger. I, however, am like the waitress: I can put food on the table, but I don’t want to face the larger need. The other night, I dreamed I was arguing with a hot-breathed, red-eyed devil. As if my soul were at stake, I was swearing to him, “But I am good!” If I were a measuring cup, though, how full of goodness would I be: One-fourth? Three-fourths?
Krysl’s poem ends with a juxtaposition that cuts me to the core: of the Venus of Willendorf, breasts overflowing, and starved Kali, shrill and devouring.
At first glance, it is Richard and Ann who are the devourers in my story; there is no end to their need. Once, though, a long time ago, as Richard and I were driving by the Lutheran church that we’d attended when we were children, he said to me: “All that praying, Sue, where did it get us?” And in a flash I saw what he saw: how much we were alike, how equal. I, too, am a bottomless pit. For all of us there is only this one life, this one chance at the table, this chicken-scratching for our portion, this hunger that never ends.