Hearing Voices - It's No Joke!

          In honor of National Mental Illness Awareness Week, please take a few moments to learn about schizophrenia, the mental illness that led to the death of my son. Schizophrenia causes moderate to severe disability in 40% of males and 25% of females that are afflicted with the disease, and has a suicide rate that is 12 times that of the general population. Despite the severe impact on its sufferers, the symptoms are the subject of jokes, people with the illness are ridiculed and avoided, and even their families often try to keep their illness a secret - as if it is shameful. Before you make another joke about "hearing voices," or laugh about someone rambling nonsense on the street, think about what you are doing. Making fun of someone who has hallucinations due to schizophrenia is as bad as ridiculing someone who is losing their hair due to cancer. It's not okay to make jokes about an illness that devastates lives. Educate yourself, and help put an end to stigma. As long as stigma exists, better treatment and more research into cures will not happen.


Learn more:
What is Schizophrenia?

Supporting a Family Member with Mental Illness

I  went to a Bipolar/Depression support group recently and was struck by how much the support of family members contributes to the well being, or lack thereof, of people suffering with mental illness.  Not just any support, but knowledgeable support.   Three people in the group described family members that had taken the trouble to learn everything they could about the illness their child or spouse had, and to make adjustments in their lives to accommodate the unique needs of someone who is bipolar or suffering from severe depression.  These people were saved additional stress at home that can be caused by living with people that don’t understand, and in the absence of understanding, unintentionally make things worse.   

I have seen both sides of mental illness.  I’ve experienced my own struggles, having been diagnosed with Bipolar II many years ago, and I have children that have experienced mental illness as well.  My family members are all supportive of me to a degree, but none of them have taken an active interest in learning about the illness or how to interact with me when I am in the throes of an episode.  Perhaps it’s because I’m usually stable, and because Bipolar II isn’t as extreme as Bipolar I.  I’m never fully manic, so I’ve never had episodes that lead to psychosis, and I’ve never been hospitalized.  When I’m depressed, I isolate myself, so my depression isn’t obvious to the family members that don’t live with me, and to those that do live with me, I often make excuses of a physical illness to explain why I’m missing work and spending most of the day in bed.   I manage to function and maintain stability without a knowledgeable family member actively providing support, but life would be a lot better if the people closest to me took the time to understand the illness and to learn techniques to help me through my hard times.  Life would be better for them as well, because the same resources for learning how to help someone cope with mental illness, also teach how to cope while living with someone with mental illness. 

When my son, Eliott, became ill with schizophrenia as a young adult, I became a knowledgeable support person for him.  I read several books, took the “Family to Family” class through NAMI, joined an online forum for parents of children (mostly adult children) with schizophrenia, and went with him to his psychiatrist’s appointments.  My interaction with him was guided by this knowledge, and I was there with him through every crisis and every success.  Tragically, and despite my efforts, Eliott took his life. 

When my daughter developed anorexia and anxiety, my husband and I became active participants in her recovery and I am certain that our involvement reduced the duration of her illness and helped her develop the tools to help herself when she is tempted to return to anorexic thinking and behavior. 

How can I say a knowledgeable family member can help, when I do okay without one, and my son took his life when he had one?  My experience with my daughter is one reason, but the real answer is that I say only that it will help; it is not a cure or a substitute for treatment with therapy and medication.  Eliott’s life was better and he had periods of improvement because of my support, but ultimately, it is up to the person with the mental illness to take responsibility for their own well being.  Eliott’s illness was severe, and one effect of his illness was that he didn’t believe he was ill.  As a result, he stopped taking medication every time he started to feel better, and spent most of his visits with his psychiatrist fighting with them about the diagnosis.  This is why he lost his battle, but my support wasn't wasted because I know his suffering was reduced, and I increased his chances of surviving, even though the illness eventually succeeded in killing him.  Helping him helped me as well.  I could not live with myself if I hadn't done everything I could for him.  

In contrast to Eliott's experience, I faithfully take the medications prescribed and I practice the coping techniques taught to me in therapy.  Yet, as most people with mental illness will attest, even with treatment, there are ‘break through” symptoms.  For me, that means I still have periods of depression.  When I experience these, I see my psychiatric nurse-practitioner a few extra times and she usually prescribes a temporarily adjust my medications to lift me out of it.  Beyond that, I just do my best to get through it – knowing from experience that it is not permanent.  Yet I long for the compassionate understanding of someone who knows how best to be with me when I am depressed.  I believe I would rise from the darkness of depression sooner, and be able to maintain more functionality, if someone close to me was a partner in getting me out of bed and doing the things that I know I need to do to get better.

The people in the support group proved this to me.  The three people that impressed this upon me described specific things their family member did that helped them make the changes they needed to make, and helped them cope with the pain and confusion experienced due to their illness.  These three seemed to be the most confident in their ability to survive and feel safe despite immense difficulty in their lives.  There were others there that described a lack of support, or family members that tried to help, but because they hadn’t learned how, actually made things worse.  These people seemed less stable and more at risk of their mental illness taking a greater toll on their lives.

If you have a family member who lives with a mental illness, I urge you to to learn everything you can about what it’s like to live with that illness, the best way to help someone with the illness, and coping strategies for yourself as a support person or caregiver. 

If you live with a mental illness yourself, please try to educate your family members during times that you are feeling strong and free of symptoms (or at least not in the midst of a very bad episode).  A very good first step is the “Family to Family” class through NAMI – I can’t recommend it enough.

I’d love to hear any tips from readers for improving family relationships when mental illness affects the family.        

Involuntary Treatment, a Necessary Evil

One of the symptoms of schizophrenia is that the sufferer doesn't recognize they are ill, and therefore, resists treatment.  If you have a loved one with a severe mental illness, especially schizophrenia, you may need to seek treatment for them against their will.  This is part one of my experience in getting my son the psychiatric help he needed.

“Eliott thumped his fist on the round, wood-laminate topped table.  “I shouldn’t be here!” he yelled.  We sat across from each other on orange, hard plastic chairs in a small visiting room in the locked psychiatric unit of Portland Adventist Hospital the morning after his first night of an emergency evaluation.  A window gave view to a small enclosed courtyard garden where supervised patients could go for fresh air.  Eliott closed the heavy drapes before we sat down.  Windows make him nervous. 

He is twenty-three now, almost twenty-four, and stands just over six feet tall.  Even so, and even with the short beard, I still saw my little boy sitting across from me.  He is my first child, my baby.  Eliott likes to keep his nearly black hair cut close to the scalp, but he hadn’t had a haircut in a long time and the curl was coming out.  The thick, poofy mass was a little wild, like I remembered from summer vacations back when he was too busy riding his bike and playing with the neighborhood kids to get a haircut.

“The people here are crazy, Mom.  I’m not crazy, what’s happening to me is real.”  His voice was quiet and serious.  He needed me to believe him.  “The guy I have to share a room with talks all this crap about aliens – can you believe that?”  He stood and went to the doorway, where he tipped his head toward a sixty-ish woman in the hall.  She clutched a small stuffed dog and wore loosely fitted, pale blue polyester pants and a stained white sweatshirt.  She muttered to herself.  “This old lady just stands at the door talking to herself in some weird kind of language.  She keeps trying to open the door.  Doesn’t she know we’re locked in?  I’m not like these people, Mom.  I gotta get out of this place.” 

Even though this was his second hospitalization, I was still alarmed to see my boy locked in this place.  But if not here, where did he belong?  A day earlier he was ranting about the FBI and radio waves and mind control.  He was out in the woods off of Highway 26, and threatened to shoot himself while I listened on the phone.  He was hysterical, I was hysterical.  But now, not even twenty-four hours later, he is calm.  Well, relatively calm, considering he’s locked away with crazy people.  “I know you don’t want to be here, Eliott, but there’s nothing we can do about it right now.”

Eliott crossed the room and peered through a slit in the curtain.  “Last night when I was in bed some girl was screaming her lungs out and then she cried all night.”    He faced me again.  “All day people sit around like zombies and stare off into nothing.  Come on, Mom, you know I shouldn’t be here with these people.  I’m not crazy.”  He sat back down in the plastic chair and propped his elbows on the table, his forehead leaning onto his hands.  “You have to believe me, Mom, the radio signals were messing with my mind, but now that I got away from them I’m okay.”    

“I know this is hard, Eliott, but if people really are spying on you or trying to hurt you, then use this time to rest and relax.  Nobody can get to you in here.  You’re safe here.”  I’ve learned not to directly challenge his delusions because that just pushes him away.  It’s a fine line.  I don’t tell him I believe him, but I try not to tell him I don’t. 

“Maybe…but what if they’re here?  I’m telling you, Mom, Patrick-Dad knows what he’s doing and he’s lying if he says he didn’t make all this happen.   You know him; you know what he’s like.  He’s evil.  And he’s not gonna stop until he breaks me.  I don’t even think he can stop it anymore.  He got so many people involved, and they got other people involved, and now it’s bigger than anything that even Patrick-Dad can stop.  They want to hurt me, Mom.  You don’t know what it’s like.”         

Eliott’s eyes fix on the table.  I lean in low and try to coax his eyes up to look at mine.  “I want to understand what it’s like, Eliott, to know what you’re going through.  First, though, I need you to be safe.  You’re here because you had a gun and said you were going to kill yourself, and because you made threats against your dad, not because people don’t believe you.”

“No, I’m here because Michael-Dad called the police on me.  Why did he do that?”

“Because I told him what you were saying to me on the phone.  You were driving around with a gun, making threats, and we didn’t know where you were.  I told him you had a gun and he needed to call the crisis unit if you showed up at home.  They brought the police.”

He jumps up from the table and shoves his plastic chair, plastic and metal crashing across the room, hitting the wall behind him.  “You did this to me? I thought you were on my side!”                                                    

“I am on your side, Eliott.”  I pick up the chair.  “Sit down, honey, let’s just talk.”

He slumps back into the chair, but won’t make eye contact.  “If you’re on my side, then get me out.  Tell them I’m not crazy.  I only had the gun because I figured out how Patrick-Dad was spying on me and making my thoughts be heard by the people spying on me.  I wasn’t going to kill myself; I needed the gun to protect myself because they were gonna try to stop me from telling the FBI.  And I never said I was going to kill Patrick-Dad.  I swear I didn’t.  You made that up.  See?  They put me in here because of what you said, so they’ll let me out if you tell them to.”

“Things aren’t so simple, Eliott.  You need to stay here for now and do what the doctors tell you to do.  It’s the only way out of all of this.”  He pleads, he yells, he makes no sense.  I counter over and over that I want him to be safe and listen to the doctors.  Round and round.  “I love you, Eliott, but I have to go now.”  I give him a long hug.  “I’ll be back later.”

“Mom, wait,” he calls as I near the exit.  “Bring me some ear plugs and a mouth guard, OK?”  I know why he wants the mouth guard.  He’s told me before how the shape of his teeth and the way his tongue fits against his teeth causes his thoughts to echo or vibrate somehow in his mouth, making his thoughts seem like someone else’s voice talking to him.  He’s tried hard to explain it to me a couple of times, sure it caused the key to the voices he heard.  I don’t ask him to explain today.  I will bring him a mouth guard.

******

I wait in line to enter the courthouse and pull the hearing notice from my pocket one more time.  The simple paper reads nine a.m., April 24th, 2008, courtroom 210.  The woman in front of me, her cell phone pressed to her ear, gripes about the morning traffic, the homeless man who asked her for money on the sidewalk, and the endless petty concerns of a self-absorbed person who doesn’t know about real problems.  Behind me, a man who I guess to be in his late forties, with graying hair, an expensive looking suit and polished shoes, stands so close I feel his breath on my head and the edge of his briefcase digs into the back of my leg.  I want to step down hard on his foot.  I want to give a little push to the woman in front of me and tell her to move up, and that, by the way, nobody cares about her parking troubles or that the Starbucks girl gave her the wrong drink.  I’m in no mood for this line.  I’m here to testify at my son’s psychiatric commitment hearing, and I shouldn’t have to wait in line to do something I dread.

Finally, security checkpoint in sight, I slip off my slightly scuffed, burgundy colored shoes with the kitten heels, and drop them in the plastic bin with my watch, purse, and cell phone.  My belongings and I pass through the metal detector with no beeping or secondary examination, so I guess there’s nothing to stop me now.  I step back into my shoes, gather my things, and climb the wide marble staircase to the second floor.  Something about the clickety sound of my shoes on the sleek, hard marble, and the steady rhythm of my steps calms me.  This is the right thing to do, and I am strong enough for the task. 

Courtroom 210 is my destination.  I go left at the top of the stairs and start down a long hallway.  How impressive this neo-classically designed courthouse must have been when it was built in the early 1900’s.  The marble floors remain, but the great bones of the building are now buried beneath cheap renovations, circa 1960.  I peer through open doors at courtrooms with acoustically tiled ceilings, fluorescent lights in plastic rectangular boxes, and awkward partitions.  I pick up my pace as I reach the end of the first hallway and take a right into another long hallway.  I hurry past door after door, and kick myself for not asking for directions at the information desk.  As I round the corner into a third hallway, I know I turned the wrong way at the top of the stairs.  Damn!  Where is courtroom 210?  I start to fret about finding the right room in time, but spot my ex-husband, Patrick, and his wife, Tracy, at the end of the hallway talking to a man I don’t recognize.  Thank God! I’m in the right place, and the hearing hasn’t started yet.

Patrick seems older than usual, I think as I get closer.  His striking “Italian good looks,” which both our boys inherited, are dulled by exhaustion and stress.  He’s in his early fifties, and still has the slender but muscular body of a ballet dancer, which was once his career.  People usually think he’s around forty.  Today, as he stands talking to the younger man in the suit, he looks his age or more.  His olive colored skin is reddish and irritated, and creases in his face pull the corners of his lips down and push his eyebrows into a flat line over his eyes.  His wife, Tracy, a dancer like him but much younger, wears her medium-long, straight brown hair pulled back in a pony tail.  Her slight figure nearly disappears behind the two men.

“Hi, I’m Eliott’s mom,” I say to the man I don’t recognize. 

He extends his hand as he introduces himself and explains he’s from the District Attorney’s office.  I swear I’m listening to him, yet I can’t tell you his name, he’s just “the man in the suit.” 

“I’ve been telling Patrick a little about what you can expect in the hearing,” the man in the suit says to me.  “There are three hearings scheduled, and they’ve started the first one already.  I think it’s going to be short, and as soon as it concludes you can go in. The judge, the attorneys, the defendant (your son in this case), and a few other people will be seated at a long table at the front of the room.  Witnesses will be called to a seat at the table to testify.  Several rows of chairs are on the other side of the room.  You’ll take a seat in one of the first two rows, which are reserved for witnesses waiting to be called.  Hearings like this are open to the public, and there are a lot of people in attendance today.  The witnesses and people involved with the other hearing will be in there of course, but there are also a couple of rows filled with a group of students from Portland State University who are here to observe as part of a class.  And as you may know, today is ‘take your son or daughter to work day,’ so there are also a few kids in the room.” 

I look hard at the floor and try to blink away the impromptu tears before I look up again.  Poor Eliott, I think.  My heart hurts for him.  How cruel this is.  He’ll be captive in front of a room full of strangers, his personal hell on display.  How can I do this to him?  How is this not betrayal?   

The man in the suit goes on about what to expect, and what we will be asked.  “The judge may ask you a couple of questions directly, but most of the questions will be from two psychiatrists who are serving as examiners, the public defender for your son, and me.  You are witnesses for the D.A.  The police officer and crisis unit worker who responded to the call and took him to the hospital will also testify.  The psychiatrist who’s treated him the last three days and the court investigator who evaluated him in the hospital have submitted written reports into evidence, so they won’t be here.  All of the questioners will try to determine if he will be safe if released from the hospital, and whether he would be a danger to anyone else.  The judge may release him, even if he is ill and needs treatment; the only questions to the court are whether he presents a danger to himself or others, and if he can take care of his most basic needs.   The public defender is there to speak for Eliott, and will argue for Eliott’s freedom to decide for himself whether he wants treatment.   

“So I have to get up there and say we’re afraid of him or think he’ll go right back out and try to kill himself?” I ask.

“Your job is to describe what happened on the day the police were called.  You don’t have to give your opinion, just tell them about the conversations you had with him.  They might also want to know about violent behavior or threats you’ve witnessed in the past.”

“He wants out so badly.  He’s terrified,” I tell him.  “I don’t know if he’ll forgive me.  If he doesn’t trust me how will I be able to help him at all?”  My stomach is a knot, and my whole body feels set for flight.  Should I tell the man in the suit I’ve changed my mind, and if they let him out I’ll make sure he’s safe and won’t hurt anybody?  I fight the urge to leave.  “I know Eliott needs more than I can do for him and needs to be in the hospital,” I say. “He hasn’t even agreed to work with the doctors and refuses medication.  He’s convinced he’s not ill, so he can’t get possibly get better without treatment.  I guess this is the right thing to do.”

The door opened, and several people filed out.  D.A. guy gestured us into the room and we took our seats.    

        

Useful, Strong, and Beautiful

People with mental illnesses are a little like dandelions.  Nobody wants to see them, blame is laid on the people that allow them to grow, and they're everywhere. But dandelions aren't just weeds.  These bright yellow flowers are actually very useful, beautiful in their own way, and very strong.  Remember when you were a child and would pick a handful of dandelions for your mom?  A beautiful bouquet offered up with a big smile.  If your mom was like mine, she treated them as a precious gift, putting them in water and displaying them on the table.  Dandelions are a nutritional powerhouse, being one of the top six herbs in the Chinese herbal medicine chest, and ranked 9th  overall by "Gardening for Better Nutrition."  They survive and thrive where other plants fail.

I have a mental illness.  I was diagnosed with bipolar II disorder in 1999.  I have learned to manage my condition with proper treatment and it doesn't control my life.  Nor does it define me.  I am a useful, beautiful, resilient person; I am a dandelion.

All three of my children have also lived with mental illness.  My oldest son, Eliott, developed schizophrenia in his late teens, and died by suicide at age twenty-five.  My middle child, Joe, has battled chronic depression since the death of his big brother, but is showing strength by seeking treatment and forming new coping skills.  He is a special person, who enriches the lives of his family and friends.  My daughter, Natasha, developed anorexia when she was in eighth grade.  After a year of treatment, she regained her health.  Though she relapsed a few years later, she again overcame the illness, proving her strength and becoming a person well equipped to deal with the challenges of life.  I love my children, support my children, care for my children.  I recognize their uniqueness, their purposefulness, their beauty, and their strength.  I am the dandelion gardener.