“Gravely Disabled” — How I Narrowly Escaped a Conservatorship

By Susan Stebbins Standen 

I travel up through translucent layers of reality. They lift one by one, slowly, imperceptibly, like filmy veils unwrapping a cocoon. A few faces, a garbled attempt to communicate a message from the afterlife, a sharp pain in the back of my hand and the dull ache that lingers. When I finally wake, the room is empty.

I really suck at killing myself.

My first conscious thought is followed by an awareness of my complete relaxation, body and soul. Despite the unexpected awakening, I am still cocooned. I did not know a bed could be so comfortable. It conforms to every bend of my bones, cushions every potential arch of neck or knee or back. I’m untroubled—delighted, even—by the tubes in my arms and groin. I am being fed and drained. There is no need to get up, no need to take care of myself. It is all being done for me, like a child in the womb. I cannot think of a better way to be.

“Inner Moonscape” by Susan Stebbins Standen

The curtain at the end of my bed is partially open and without moving my head I see a sign that reads “Cardiac Care Unit.” I know cardiac means the heart. Did my heart stop? It seems fine, beating slowly and reliably in my chest. I follow the beat, feeling the blood pushing through arteries out to my hands and feet. The pulse in my big toe is apparent to me. All my other toes, my fingertips, my scalp, even the tip of my nose. I have never been so conscious of my body.

This is life, I think.

The next time I wake I have a few more thoughts about life and death. Despite my very best effort to leave it, I am still in the world. I had given up, given it all up, the hopes, the dreams, the pain, and the fear.

I am empty of all that, now, I realized. Who cares if I never do anything but lie in this bed for the rest of my life? It is enough that I am breathing. That’s the important part. All the rest is small potatoes.

Why did I ever think I needed to fulfill anyone’s expectations? What is success, anyway? I need to do nothing more to be worthy of life. I have no price to pay, nothing to prove. I realize that having given up all hope of being what others wanted me to be, I am now free to live however I want.

Or so I thought.

* * *

Two days later I am sitting in a chilly room on a flat bed with leather handcuffs, reconsidering that thought. I am not free. No one wants to hear that I want to live, except Renae.

“Do you believe me?” I asked my partner of fifteen years as she watched me being unhooked from all my tubes in the Cardiac Unit. The doctors were removing me from my blissful cocoon and getting me prepared to be ambulanced to the psychiatric hospital across town.

Renae had tears in her eyes. “Yes, I believe you. You sound like the old Susan, the real one. I thought I’d lost her.”

I hang on to that thought. I am not exactly the “old Susan,” but I am the real one. What had it done to my brain, to take so many lethal pills and yet live? Some kind of giant chemical shock had jolted me right out of suicidal depression. I feel clearer than I ever have in my life. I feel renewed. I feel triumphant.

Triumphant, but frustrated and afraid as well. The handcuffs, currently dangling at the sides of the wooden bed, are a clear sign that I am not out of this yet. Of course they have to put me on a psych hold, I tell myself. Twenty-four hours, or seventy-two at the most, just to make sure I’m not going to try it again. It seems a long wait in some ways; in other ways, it’s just a hiccup on the way to my new life. Surely they’ll see, like Renae does, that my mind has changed, that I am free of depression.

* * *

Three days later, it is clear that no one else sees me like Renae does. The walls are closing in. My family members have called the hospital and were given all my information. “Your father was so concerned,” the nurse tells me. I remind her of my HIPAA rights, of the large sign I myself had put on the nurses’ desk specifying that no one but Renae and Patricia, my therapist, be allowed to know I was here.

It does not matter. I have no rights. I laugh to myself as I walk away from the desk past the huge poster called “Patients’ Rights,” a glaring piece of fiction written by people who were never in my position.

I am forced to take medication that makes me fall over constantly. The tiled floor is like the deck of a ship, constantly tilting side to side. I stagger and slam against walls. I speak to the nurse who hands out the meds but she glares at me. “Do you really want to be non-compliant?” she asks. I take the comment as it is meant: a threat.

I take another dose, and prepare for rough seas.

Time passes like jam spilling through a screen. No movement for a long time, and then splat, it’s afternoon. The weight of gravity is the only clock I can measure by.

They can imprison my body, but not my mind. If I can get through this, I can get through anything.

Every other morning I see people lined up in wheelchairs to go get shock therapy. ECT by assembly line. This can’t be happening, I think. It’s 2010, not the nineteen fifties. But every evening the nurses or psychiatrist present me with a piece of paper. They put a pen in my hand. Sign it, they say. It’s an agreement for electro-convulsive treatment. Every evening I put the pen down next to the unsigned paper. I do have this right, at least, but the cost is dear.

“You don’t want to get well,” my shrink admonishes me. “You know there’s nothing more to be done with you: You’re medication-resistant and a danger to yourself. The procedure is safe. Research has proven it. If you don’t agree to ECT I assume you don’t want to feel better.”

“I’m not a danger to myself,” I explain. “I’m glad to be alive, I want to live.”

“That’s not what your family says. They say you’re a liar.”

“You’ve been talking to my family?”

He looks at me like I’m stupid.

* * *

I finally decide to take my father’s call on the patient phone, just to find out what’s going on.

“We can’t let you do this anymore,” says Dad.

“I’m fine now, Dad, I just want to go home.”

“We tried that.” His voice is rough. “You need a safer facility.”

“Safer? What do you mean?”

“There’s a great place right here in Massachusetts, beautiful grounds, a really excellent program.”

“I can’t go to Massachusetts, Dad. I live in California, remember.”

“You’ll live where I decide.”

“Did I wake up in Russia this morning?” I ask sarcastically. “Because I think I have a right to live where I want after I get out.”

“Not if you’re judged to be ‘gravely disabled.’”

“Gravely… Dad, you’re kidding, right? That’s for people who can’t feed or dress themselves, not someone like me who owns a home and pays their bills. Not to mention a fifteen-year stable relationship.”

“You’ve tried to kill yourself twice this year. We can’t allow this to go on. I will be your legal guardian from now on.”

“There’s no judge in this world that will say that I’m gravely disabled under the law.”

“Enough money will get a judge to say whatever I want.”

“You bastard! You f       controlling a      , you are doing this for yourself, not me!”

“Think what you like.”

Shaking, I slam down the phone and wobble over to the nurses’ station. “Can I talk to someone, please?”

The nurse hears me out. She shakes her head. “You have to convince them that you have a plan for treatment after the hospital. If they see you are intending to go into a voluntary program, maybe they will re-think putting you on conservatorship.”

I call Renae. She finds me phone numbers of outpatient treatment programs in Sonoma County. I call them all, trying to sound both urgent and sane at the same time. One calls me back, saying that Dr. B. told them not to accept me. When did I give my former psychiatrist the right to talk to anyone about me? Never. I start to seethe, but control myself. I need my mind to stay clear; I need to find my way out of this.

But no one will take me. I contact my therapist, whom I’ve seen every week for the last seven years.

“I can’t be your only support anymore,” she tells me. “If you go into a residential program, I will agree to see you, but only then.”

I feel stabs of pain in my belly and chest. Patricia, how could you desert me?

“No one will take me,” I whisper.

“Then there’s nothing I can do. I’m sorry, Susan.”

She refuses to refer me to another therapist, and hangs up.

I go to bed and cry and cry. I try to be quiet because how will they believe I’m not depressed if they see me bawling my eyes out? Tears and mucus and snot run all over my pillowcase. I turn it over and drench the other side. This isn’t depression. This is grief, and betrayal, with a mix of terror. I still want to live, want to be free. But it hurts. How it hurts. Patricia was in my heart closer than anyone but Renae. Now I only have Renae.

Renae is holding strong for me. She exhausts herself driving back and forth a hundred miles to see me almost every night. She smiles and hugs me and says she believes me. Her trust is golden. It is the most precious thing in my life. The only sweet thing in my life.

My determination will not let me despair. I have met with the so-called Patients’ Rights Advocate, a young man who seems both uneducated and apathetic. He sat through my 5250-hearing, which extended my 5150 (3-day hold) for another two weeks, without saying a thing. Now there’s a new code to learn.

* * *

“What’s a fifty-two sixty?”

The shrink looks oddly uncomfortable. “Thirty-day hold. That will keep you here through your conservatorship hearing.”

“You can’t possibly think I’m gravely disabled. You’ve talked to me almost every day for two weeks. You’ve heard reports from the nurses. Do you really think I’m still a danger to myself? That I need to be in the hospital?”

His answer surprises me. “No, I don’t.”

“You think I’m well enough to leave?”

“Yes, but it’s not up to me.”

I’m puzzled. “Who is it up to?” Even as I ask the question, the answer comes to me.

“Your family.”

“Since when has my family been psychiatrically trained? This doesn’t make sense. You are the one that signs the discharge papers!”

“Not in this case.”

“Why not? What’s going on? Is the idea for me to live in a locked facility forever?” A silent wail of despair wells up inside me. I fight it down.

“That’s the general idea, yes.” He sounds disinterested and looks down at his desk.

I can’t speak. The room wobbles and it’s not just the meds. What’s happening to my life?

The doctor looks up and sees something in my face that makes his tone kinder.

“Susan, if it were up to me you would have been out of here a week ago. But I’m not going to have my children go to community college because of you.”

It takes me several moments to process his meaning. “You’ve been threatened with a lawsuit?”

He gives a curt nod, his face expressionless now. “A psychotherapist and an MD, I believe.”

“My brothers?” Outrage swamps my terror.

The doctor shrugs.

* * *

“Mom, mom. Tell me you’re not part of this.” I grip the phone in my fist.

“What do you want me to say?” She sounds oddly smug. No wonder; she holds all the cards. Now it’s my turn to feel as helpless as she has. I have a feeling she’s enjoying this.

“I want you to tell me you’re on my side. I want you to say you believe me, like Renae does.”

“I’m not as easy to fool as Renae. I see right through you, Susan. And so yes, I’m on your father’s side. You need help.”

I let out a breath I didn’t know I was holding. Mom’s attitude hurts less than Patricia’s. Perhaps so many losses have dulled my senses.

“Then it will be a long time before I’m ready to speak with you again,” I say.

I hang up.

There’s a woman here on the ward who says she’s had sixty ECT treatments over the years. Her voice is shaky, her eyes are oddly blank. But she does speak, and she tells me her story. Twenty years ago her husband left her. She tried suicide. She was hospitalized and given ECT. She was put on conservatorship. She was told where to live, had no access to her money, and was threatened with the hospital if she didn’t take the meds they gave her.

Round and round she had gone. To dingy, one-roomed apartments, group homes, board-and-cares. Back to the hospital. More shock treatment and more meds. Twenty years.

I might have been inclined to disbelieve her but for the line of wheelchairs that paraded shock victims back from the medical unit. Slumping, drooling, wide-eyed and pale. Not me, I thought, grateful that they were still allowing me to put the pen down before signing.

How long will I last? Will I give in, or will they sign my name for me and say I lost my memory of it? The only thing I have going for me is my brain. And Renae. I’ve got to keep the one, and get back to the other.

It’s always cold here. This unit is brand new, they say, and the air conditioning doesn’t work right. The other patients and I walk around or sit with layers of flimsy cotton blankets wrapped around us. There is a sort-of porch, on which people can go out at certain times. It’s covered and screened in, and I refuse to let myself go out there. The next time I breathe fresh air, I promise myself, will be when I’m free.

“Take your pills,” says the meds nurse.

“They make me dizzy. I’m getting bruises on my elbows and shoulder from hitting the walls.” I hold out my arm to let her see.

“What’s that?” She takes my arm, but not to see the latest bruise. There’s a rash underneath my wristband. “Why didn’t you tell us you’re allergic to latex?”

“I didn’t know.” I forbear to tell her that I’ve never worn a hospital band for so long.

The nurse cuts off the wristband, scans the bar code and hands me the dangling plastic strip and my cup of pills.

“I want to go home,” I murmur.

“It’s your own fault you’re here.”

* * *

There’s a new patient, a woman who came in last night. She is loud at dinner and when I ask her to be “a little quieter” she screams at me and calls me a bitch. The confrontation scares me.

The next morning the same woman appears stumbling out of her room, like me with my off-center gravity, but worse. Her eyes are glazed and she cannot speak at all. I look at her face, but no one is home. Seeing this scares me worse. I’d rather have her yell at me than lose her identity altogether.

By this time all the patients who’d been here before me are gone, as are almost all those who had been admitted after me. I talk to the people who seem nice and hear their stories and feel burgeoning friendships begin. They seem to like me. They all wonder why I’m here. Then they are discharged while I remain.

I ask one nurse who’s been nice to me about the 5260 order that my doctor has made. She looks surprised. “I’ve been here twenty years and I’ve only seen one other 30-day hold.”

“What was the other person like?”

She shakes her head. “Not like you. Who did you piss off?”

“Everyone. Almost. Particularly a very rich father and two professional a      brothers with no scruples. They threatened the doctor with a lawsuit if he lets me go, and my dad’s bribing a judge to conserve me.” I think about how insane this sounds. Why would she believe me?

The nurse widens her eyes. It seems that she believes me. “Which doctor?” Her voice is very low and secretive.

I tell her. She purses her lips and nods. I can see she’s distressed about something. So upset that I don’t want to make it worse by asking her what it is. She answers me anyway.

“It’s my job,” she whispers. Then she walks away.

I puzzle it through. What did she mean, it’s her job? Her job is to follow doctor’s orders. If she believes something is hinky with the doctor, she can’t say anything or she might lose her job. That’s what she means. She’s afraid to put her job on the line for me. I know what this means.

She’s going to help me.

* * *

At the end of her shift, right before visiting hours, the same nurse comes to me and slips something in my hand. A scrap of paper. I start to open it but she hisses at me to stop.

“Don’t put it anywhere,” she whispers.

“My lockbox?” That’s where my shoes and purse are.

“Don’t be silly, that’s not private.” Which is news to me. I thought it was private. I think of my journal, where I’ve been keeping my notes, and I’m glad that I carry it everywhere and sleep with it in my bed.

“Don’t look at it. Give it to the one who visits you,” she whispers. She must mean Renae. “Don’t let anyone see you give it.” The nurse turns around and walks away as if we’d never spoken.

I disobey her almost at once. The handwritten note, folded three times, has my doctor’s full name and medical license number on it. When will I have the freedom to use this information? I sigh.

More important than the possibility of filing a complaint someday, she’s given me something more. She’s given me courage.

I speak again to the Patients’ Rights Advocate. He has tousled hair and his young face looks sleepy. I tell him about my father’s threats to bribe the judge to conserve me, and about my brothers’ threat to sue my psychiatrist. The advocate just stares at me. I don’t know if he doesn’t believe me or just doesn’t care. He lets me know that an ambulance will take me to court for my next hearing.

“That’s a lot of money to waste on one nut,” I tell him.

The irony escapes him.

Renae is excited when she comes to see me. After a faux-casual hug in which I slip her the nurse’s note and tell her what’s on it, Renae tells me her news. “They can’t conserve you from San Mateo County,” she says. “Because only a judge in the county where you have a legal address can hear your case.”

A reprieve. It feels as though the heavens have opened up. They still can chase me when I get home, but maybe I will get home after all.

* * *

I’ve been here twenty days now, and one of the nurses hands me a letter. It’s from my insurance company. It seems they also think they’re spending a lot of money on one nut. The letter begins, “You’re clearly not benefiting from your hospitalization…”

No shit, I think.

It takes me another minute or two to untangle the bureaucratese and discover that the letter is in response to my doctor’s request for a 30-day hold. More importantly, it is a denial of the request. They will no longer pay for my hospital stay.

I get on the phone. “Get here now,” I tell Renae. “Do not pass go, do not collect two hundred dollars; it’s time to bust me out of here.” She can barely contain her delight and I hear her rushing feet and slamming doors as she prepares for the fastest drive of her life.

I double-check with the nurse on duty. Is this right? I ask her. Can I just leave? She looks a bit bewildered but says “yes.” It’s the weekend, so my doctor’s not here, but she contacts his on-call person to double-check. Yes, my insurance is gone. And so will I be – if I can just get out of this building.

I request my shoes and purse. The nurse hands them over. She brings me papers to sign; I read them as carefully as I can in my excitement, and sign them. I grab my little comforter from home, my journal, and the puzzle books Renae brought me.

I don’t have a bag: it’s all piled in my arms. I don’t have meds ordered anywhere. I do not have a psychiatrist or a therapist anymore. All that stuff about not letting me go without an aftercare plan was just bull     after all. It was just about the money.

I’m about to jump out of my skin, worrying that my dad or someone will get wind of my exodus and stop me. But doors are unlocked before my eyes and I am ushered out. I stand outside the hospital in the cold December afternoon, feeling eyes on my back, wondering if and when someone will grab me and lock me back up again. Then I look up, and there is Renae, honking at me from the curb. I dive in with my pile of belongings like I am escaping a bank heist.

“Drive!” I yell, frissoning with fear and giggling at the same time. “Drive, baby! I’m free!”

“We’re together, and that’s all that matters,” says Renae.

I lean over and kiss her hands as we drive away.

***

Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.

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“Gravely Disabled” — How I Narrowly Escaped a Conservatorship