Sister, Redacted: The Other True Story

10/23/1989

I’m 22 years old. I live in South Sacramento with a roommate. I left school a year ago and moved out of the family home because of my father’s violence. You, my little sister, helped me pack, and swore at Dad on my behalf, calling him an “asshole.” I like to write, to make roleplaying games, but being a writer isn’t even a dream. I have no dreams. Not anymore. I haven’t even graduated from college. I just returned to school full-time because my mother is secretly paying for my education. Life is looking up.

I call the family doctor this afternoon to get the results of my sinus x-rays. The receptionist is confused when she hears my voice. Haven’t you heard? she asks. Has no one told you?

No one has called. There are no messages on the machine. She says you, my little sister, have been in a life-threatening accident and are now in a coma. You’ve been flown from Marshall Hospital to U.C. Davis Medical Center.

The floor disappears beneath me. I plunge into a boiling void of grief.

The receptionist says I should get someone to drive me. I don’t know who to call, nor do I know how to ask for help. I don’t have friends nearby. I’m not even entirely sure what a friend is or does because Mom has always said that “friends are snakes.” And even if they’re not a snake, you can’t ask for help from someone you like because they might stop liking you. Or think you’re weak. My roommate is at work. My boyfriend lives two hours away. I don’t call anyone. In the same dangerous rains that slickened the asphalt under your boyfriend’s car, I drive myself. When I arrive at the hospital, I have no idea how I got there.

Our parents are in the ICU lobby. Mom prays with church people. Dad stands apart, hunched over, his dark face wrinkled with rage and despair. They don’t acknowledge me at first. Eventually Dad tells me tearfully what happened, his voice trailing off into a squeak. Your head took the brunt of the impact. You have a severe brain injury and the surgeons have been operating. When the ICU doors open, I brace myself for what will surely be a horrific sight. But the nurse says I can’t see you. Parents only. Despite my intense religious beliefs, I have never felt so helpless. So alone.

When they finally let me see you a week later, you are incredibly fragile, like a sparrow with the feathers plucked from its head. Thick bloody stitches criss-cross your shaved scalp, your scrawny naked wings tethered to massive machines. A thousand years of sleep encrust your eyelids. You are also like a princess in a fairy tale, but you kiss the plastic breathing tube instead of a prince. The neurosurgeon says that in a year, you’ll be more or less the same girl. This news infuses us with hope. Eventually, it will prove entirely, devastatingly wrong.

I can’t stop crying. Or praying.

Take me, not her.

I cancel my Halloween plans. Later, I hear that the people I was to see said I need to “get over” what’s happened and get back to my life. So this is what Mom meant. Their callousness drives a railroad spike in my already agonizing heart.

My boyfriend is kind. He tries to distract me with silly movies. When that doesn’t work, he prays with me. But the truth is I want to die. The pain thrashes inside me, chewing and clawing its way out. I’ve never felt anything like this in my life. Yet I refuse to let it debilitate me. I stay in school. I write stories, poetry. A respected professor in filmmaking reads my work and invites me to take her graduate-level screenwriting course. I’m starting to taste who I am.

For eight months, you’re in a coma. It’s not like it is in the movies, where you wake up suddenly. Day by day, you slowly regain consciousness. Opening your eyes but not seeing. Grasping my hand but not holding it. Agitation strikes without warning at times like a cymbal crash, sending you into hellish gyrations. The doctors move you to a hospital in Pacifica where you are in a room with another Greek girl. She’s a “vegetable” from her head injury. She doesn’t speak or acknowledge others. Her family visits once a month. The rest of the time she stares at the wall. No light in her eyes. Just darkness.

As you eventually awaken, a changeling emerges. A creature who looks like you but who has halting, garbled speech and twisted memories. Childlike. Unable to walk or relate to others. Wild temper tantrums strike you like earthquakes. Whoever this is, it’s not you.

The truth is this: you died. But no one says it. I alone know, but I’m not allowed to speak. Not allowed to feel. Your tragedy is so big that there’s no room for my feelings. Shame presses its foot on my throat. I’m okay. I don’t have a severe head injury. I’m not disabled. I don’t have problems or needs. It’s true, true. Not compared to you. I understand. That’s just how it is.

I assume that someday I will be responsible for you. I decide not to have children. Not that I have any desire for them now.

Nine months after your accident, I get married. The doctor said it would give you something to look forward to. To encourage you to wake up. I have not finished school. On my wedding day, Mom orders me to take care of you in your wheelchair while she sets up everything. Can’t Aunt Velda do it? I ask. I have to get dressed. Do my hair, makeup, eat. I’m getting married, I remind her.

I’m getting married. And I feel so alone.

After the wedding, I move to the Bay Area. I do not see you as often. I finish school. I graduate. I even start working as the Editor-in-Chief of a magazine at Intel. I start making new friends. Friends I can call if something happens. Say, if I need a ride to the hospital because my sister is dying. But I don’t need them for that, thank goodness. Mom and Dad never visit. They come to the Bay Area with you, but they never tell us when they are here.

I don’t talk about your accident. If I do, people ask how you are. I never know how to answer. When I say the truth, the only thing they know about me is your tragedy. They don’t see me anymore. The first thing they ask is if you can walk. I say yes, and then they exclaim, “Oh, that’s good!” As if walking meant you were okay. I want to explain that you died, but that I’m the ghost. They wouldn’t understand. Obviously, you are alive. Even if it isn’t you. And so am I, even if I have no feelings. Or needs.

I realize early on that Mom and Dad shouldn’t be taking care of you. The burden is overwhelming. Mom gets sick with breast cancer but doesn’t tell me until after treatment is over. They say they don’t need help, but in reality they distrust authority figures. Government services. Doctors. Nurses. Mom and Dad keep you isolated. And angry. They tell you things that aren’t true about the people who want to help you.

My grief stretches into years. Mom talks excitedly on the phone about your progress, but when I see you, the changes seem small. You are still dead. I visit your neuropsychologist. He says my feelings are normal. If I were living with you as our parents do, I would be able to accept your condition. But I can’t. I’m still in the Bay Area and now going through a divorce. My life — my God, my life — is in extreme turmoil, but not from the divorce. Not from you, or anyone in the family. My religious beliefs have joyfully, rapturously fled in the wake of real miracles. Someday the world will know the powerful tale of what happened.

But that story is for another time.

During my turmoil, Mom and Dad decide to marry you off to a sweet, disabled man who cannot speak because the plastic breathing tube atrophied his vocal chords. He uses sign language and writes little notes. And he’s very wealthy from his accident settlement. Mom tells me on the phone that he’s the answer to your problems. I ask to speak to you. My heart riots as you tell me you don’t love this man. Mom says you are confused. The wedding happens in the Greek Orthodox church. I refuse to look the priest in the eye.

A couple of months later, I am waiting for a scheduled phone call from Clive Barker — yes, that Clive Barker — when the phone rings. It’s the caregivers assigned to you and your new husband. They beg me to tell them where you are. I can’t. I have no idea what’s happened.

Mom and Dad have kidnapped you, I soon learn. Unable to get control of your husband’s money, Dad abducts you, lies to you about your husband, and forces you to divorce him. I imagine your husband howling mutely with anguish when he realizes you’re never coming home, and I’m enraged. I am not there, they tell me high-handedly. I don’t know what’s going on…

I have no right to speak.

Less than a year passes. I’m disabled myself, in chronic pain. I live in Los Angeles. Alone. And I’m scared for my life. My future looks bleak. Mom calls multiple times a week. Will you be your sister’s caregiver if something were to happen to us? she asks. We need to put it in the will. I’m disabled, I explain. I can’t even take care of myself right now. I promise her that I would make sure you have the best care. This angers her. She calls. And she calls. Over and over. The same question.

No one asks if I’m okay. If I need anything. I’m not a ghost, goddammit.

I stop answering.

10/23/2019

Thirty years have passed since that catastrophic day. Mom and Dad are both dead. Your life is far better than I could have ever hoped. Thanks to your disability benefits, you will never go hungry. You will always have care. The house, which is in a special needs trust, is well maintained. You see doctors on a regular basis. A very special woman cares for you 24/7 with a team of other special women. I didn’t stay away that whole time. I went into therapy to learn how I could deal with Mom and Dad so that I could stay as close to you as possible. Because you wouldn’t understand why I left. And you needed me, especially after Mom died.

When Dad died, I was disabled yet again, awaiting my surgery date. I came to stay with you that first chaotic week until the government agencies could step in. Dad had made no plans for you. He and Mom had lied on legal forms so that you would fall off the grid. He told you that you were not disabled. So, you lashed out whenever anyone mentioned those agencies. (You still do.) You were taught they’re evil, but they saved your life. The weight of Dad’s denial nearly crushed me that week. In three days, I was so exhausted I didn’t know what day it was. I awoke at night shivering, not from cold but from extreme stress.

I jokingly called the house “Indiana Jones and the Costco of Doom.” Dad and Mom were hoarding guns, food, and money. Lots of money. One day, I found $70,000 in cash. I could have tossed it into my car trunk in a burlap grocery bag. No one would have known. But I didn’t. Instead, I turned it over to your trustee. Legally, you can only spend the money you inherited that’s in the special needs trust on vacations and gifts. You rarely buy either.

I did the right thing, but I worry it was a mistake.

Dad wrote me out of the will because I was a “traitor.” I spoke to the authorities when another family member reported him for refusing to take you or Mom to the doctor. I wrote to the court when he abused and neglected you. I called the police when he took you out of state against court orders. (I later learned that, after Mom died, he was seen in public kissing you on the mouth. I’d suspected he was doing much worse in private. I wanted to dig him up and murder him a thousand times.) He wrote such terrible words about me in the will that, when my boyfriend found it in the mountain of dining room paperwork, he wouldn’t let me read that part. I already knew Dad had poisoned his side of the family against me for watching over you. Consequently, he wasn’t the only one to disinherit me.

The painful irony is that you’ll never understand my heartbreak. The significant damage to your cerebral cortex means you can’t feel compassion. It’s not your fault. That’s just the way it is. Yet I have found a way to build a relationship with the new you. It’s not nearly the relationship we could have had or even what we had, but it’s what we have now.

The truth is this: thirty years ago, I lost all three of you. I’ve stumbled along in a daze for decades, stitching my wounds with ink and binding them with silences. The therapy and self-help groups helped, but the healing truly grew as I gathered to my heart our family members on Mom’s side. They see me, love me, appreciate me, as I do them. They remind me of what family should be.

And I have friends. Real friends. The kind that find you when you’ve crawled off and drawn the drapes to hide the bleeding. That hold you when you’re splintering apart. That help when you can’t do something on your own. That call, listen, and make you laugh. I’m even lucky enough to have a loving husband now who is all of this and much more. His family is everything.

I’ve lost so much. The financial and emotional impact of what’s happened has been beyond devastating. My life isn’t perfect by far. But I do have love. And my art. Hopefully others who have suffered losses like mine will read this and realize that they aren’t ghosts, either, but people with feelings and problems and needs.

Not needs like some, true, true, but still incredibly, extraordinarily important.

Sister, Interrupted: A True Story

10/23/1989

You’re 17 years old. You wake up Monday morning at a friend’s house. She lives on a winding mountain road somewhere in Shingle Springs, California. It’s one of those teacher meeting days. No school today. A senior in high school, a member of student council, a cheerleader, a model, a beauty pageant winner – you’re on top of the world in and out of the classroom. Your grades are not great but you have big ambitions. You want to study business and make a million. You should be thinking about which college will get you there. Instead, you’re preparing for a nationwide beauty pageant. Between parties, that is.

The relentless rain doesn’t dampen your enthusiasm for the day off. Your boyfriend arrives sometime after breakfast in his late model Porsche. He’s handsome, confident, strong. The envy of every guy at school because he’s picking you up for a day of fun.

You wave goodbye to your friend and her mom.

You do not put on your seat belt. Later, the firemen will say that it wouldn’t have mattered.

Your boyfriend is no better or worse a driver than any other teenage boy. He swerves around bends in the road on the slick surface as you chatter about music, checking your make up and hair in the visor mirror. Your boyfriend decides the music has to change. Maybe you don’t like it. Or maybe he doesn’t like it. He fiddles with the tape player. Something is wrong with the tape. He needs to look at it. He takes his eyes off the slippery road for just a moment.

One fateful moment.

He loses control of the car. Your stomach is in your throat as the car fishtails. Spins. Instinctively, your right foot braces against the floor as if pressing the brakes. Your whole body tenses. The wild screech of tires. A sickening crash against a tree. You don’t see it coming. You’re in the “murder seat.” The car collides with the tree trunk on your side. Against your window. Your skull takes the brunt of the monstrous blow.

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My sister, Danielle, is on the left. She was crowned Miss Teen El Dorado in 1987.

A nurse is driving to work. She comes across the disaster. She stops and talks to your boyfriend, who is still strapped into the car. He is disoriented, dazed. Unhurt. She sees the blood covering you, spattering your side of the Porsche. She throws a tarp over the car. She then runs to the nearest house and calls 911.

Life Flight can’t get to you because of the trees.

You arrive at the local hospital in an ambulance, but they soon discover that you’re too far gone for their expertise. Emergency vehicles carry you to another hospital. In Sacramento. The clock is ticking. They are almost certain you will die.

But you are unaware of this. You are in a coma. The devastating injury to your brain has ripped you from consciousness. From your friends. Your family. Football games and parties. Pageants and graduation.

Your life has ended. But your body carries on.

For eight months you are in a coma. It’s not like in the movies. You awaken very slowly. At first, you open your eyes but you are not awake. The nurses put drops in your unseeing eyes to keep them wet because you don’t know to blink. Your family members hold your hand and you grasp back – not out of love but because it’s a reflex, the doctor says. A simple physical reflex. Nothing more.

Day by day, you emerge from the deep, deep sleep.

You are moved to a long-term facility in Pacifica, California. The Greenery. Although you can breathe on your own, you’re fed through a stomach tube and your mouth is thick with thrush from the constant antibiotics. Your eyes are open and wide with terrors that only you can see. They place you in a room with another teenage girl who is in a vegetative state after a similar injury. She has been there quite a while. She will be there the rest of her life.

When the doctors aren’t looking, your desperate mother puts drops of Bach Flower Remedies in your mouth.

After several weeks, you still cannot walk or talk. You cannot swallow. The first words you communicate are written with a felt pen on a portable whiteboard with the help of a nurse who holds the tablet for you. You do not write in English, your native language. For mysterious reasons, your tortured neurons reach for a language you had started learning in high school. Spanish.

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Danielle as a toddler wearing a colander on her head.

“Te amo,” you write to your sister. I love you.

You do not remember the accident. You do not remember what happened two minutes ago. Or an hour ago. Or a week ago.

Your friends disappear. They are only 17 years old themselves and they cannot drive to Pacifica. But you don’t know they are gone. You barely recognize your family. Your parents take an early retirement and devote the rest of their years to your care, even though they aren’t capable. Born before The Depression, they don’t trust the government. They lie on legal documents so that you fall through the cracks.

You cannot take normal showers, as a piece of your brain remains in your ear canal*. If it gets wet, you could die from an infection. Surgery is too risky. You go to the hairdresser once per week for a hair wash in the bowl. Ears well protected. Hygiene is always challenging, but your mother sticks with it.

Over the years, your vocabulary improves, as does your sense of humor, but you will never hold a job. For years you are wheelchair-bound. Your parents build a ramp to the front door. When you eventually regain use of your legs, you wear braces. But at least you’re walking. And communicating. Even if you don’t know where you are.

Your IQ has been torn in half. You are an 8-year-old trapped in an aging body. You have no concept of yesterday. Or tomorrow.

You tell people that Jesus did this to you. Jesus did this because you were headed down the wrong path. You were running with the Devil. Getting drunk at those parties. Jesus saved you by putting you in a coma.

There’s a lawsuit. Your family wins, but they can’t collect the $1.4 million that the court has awarded you because your boyfriend’s family immediately declares bankruptcy. The auto insurance company pays his policy limit of $100K. Every penny goes to the health insurance company under subrogation.

It angers you that people are always helping you. You are not allowed to do anything you want to do. You cannot drive. You cannot even go for a walk. People call you “disabled.” You hate that word. You are not “disabled.” You are fine. Nothing is wrong, you say. A problem with your balance is all, and your ear. You are often overwhelmed with rage. Your neuropsychologist helps you come to terms with your injury somewhat. He teaches you to use a calendar journal to keep track of what you eat and where you go. Otherwise, you would have no idea where the minutes went. Whom you have seen.

What day it is.

4/26/14

It’s your birthday. You are 42 years old. And 8 years old. Your parents have died. You did not mourn either of them. The part of your brain that emotionally connects you with other people was damaged that day so many years ago. When the car hit the tree. You have trouble connecting with people. You say “I love you” because it is something you say back. A verbal reflex. Nothing more.

You still have feelings.

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Danielle learning to cook chicken enchiladas.

Your parents isolated you for 25 years, so you have no friends. No peers. Just a few family members who live far away, visiting when they can. Trying to have the relationship with you they could never have when your parents lived. They call to wish you a happy birthday. An old friend of the family checks on you. She lives across the street. Your full-time caregivers and the Public Guardian work steadily to reconnect you to the world. To keep you from harm. To teach you living skills you never learned. Like cooking.

You sing in your parent’s church choir despite your hearing loss. The church ladies pick you up from home to go to practice and take you back.

Thanks to the government, a little church assistance, and a special needs trust, you are well cared for. You are unaware of the political battles snipping away at your safety net.

You watch the TV with the volume low. Sometimes you lean forward and talk to the people on the TV screen in quiet, rambling sentences. Caregivers come and go. The TV people are always there.

Reading is difficult. You use a bookmark but you don’t remember what you just read. Your caregivers take you out to eat. To the movies. To the grocery store. And to shop. You’ve always loved shopping for clothes. Your taste in colors is impressive. You email your sister every day. Sometimes in the middle of the night. Every hour is the same. And she replies.

Beauty pageant trophies gather dust on the cluttered piano top. Newspaper clippings about high school triumphs turn yellow in gummy photo albums.

You insist nothing is wrong with you. You’re not an “invalid.”

What is the name of your caregiver again?

You are happier than ever.

The doctor asks you how you hurt your leg yesterday, but your brain can’t remember. Instead, it creates a new “memory” that little resembles what actually happened. To fill the memory void, your brain spins stories about your life. You do not realize that these are fantasies. Confabulations. To you, the stories you tell about your life are reality. Stories about your two sons. Your stint in the Marine Corps. Your marriage to your high school sweetheart who works in construction. Your successful career as a federal judge in Sacramento.

None of these things ever happened.

None of them ever will.

This is my sister’s story. My story is in a separate post. This blog post only touches the devastating effects of this injury and the dangers of distracted driving, especially for teens. John Hopkins University says that someone with an undergraduate degree is seven times more likely to completely recover from a traumatic brain injury than someone who hasn’t completed high school. For more information, please check out the website for the Brain Injury Association of America.

*This will turn out to be untrue. One of many misconceptions your parents had about your condition.