By Andrea Vale

People tell me that looking at me is like looking at a ghost.

I’m an exact replica of my older sister – 5 feet tall, blue eyes, curly brown hair. It brings a new meaning to the term “dead ringer”: she died when she was 21.

I’ve always been her twin. The doctors and nurses used to call me Little Lizzie. I would accept their flattery uneasily as they smiled down at me – at 8 years old I recognized the forced enthusiasm with which adults spoke when trying to mask an ugly reality from young eyes.

Years after the fact, at age 17, I sat down with my parents and learned the whole truth of what those looming Victorian edifices contained.

The first was in 2004. Though not a state-run facility, she was there because of the state’s failure as of yet to provide her a bed in a nearby state hospital. It was, on paper, an institution where teenagers were sent after destructive episodes. There the assembly line had been perfected: they were given a tune up of medications, a few weeks of being watched, and after they simply promised not to hurt themselves, the patients would be released, until the near future when they relapsed and returned.

Liz was a victim of PTSD. She was severely bulimic, as well as funny, a good tennis player, and captain of the debate team. The patients she was placed with were illucid, violent, or both.

“This was a place where kids go for a couple of days up to two weeks after ‘episodes’ of violence or breakdowns, until they are stabilized or sent to a better facility,” Dad said. Liz was there for three months.

Mom and Dad describe that first mental health facility as “a horror show”.

“They would send out for pizza every Friday night. There are certain things a bulimic can and can’t eat, and they didn’t understand that. So she would sit there eating a bowl of lettuce while others ate, and the temptation to gorge on pizza and binge was true torture. The nurses would scold her and tell her she was faking and that she had to eat it or would be punished, until she called home, crying,” Dad said.

“They fully admitted that they weren’t equipped and knew nothing about her illness. As a result she slipped deeper into her illness.”

Instead of efforts for true rehabilitation, she was given a Band-Aid solution of pills that only temporarily stalled her next emotional relapse. Meanwhile she waited, surrounded by dangerous, frightening teenagers and dwelling on an uncertain future. She had entered expecting to leave and return to her healthy life. Instead the days mounted into months while feelings of despair and hopelessness crept up.

She was being warehoused - the state failed to provide her a place to stay long term, and so there she stayed. The psychological regression was almost fatal.

“The last month she was there her deterioration was so bad that they essentially dealt with her by sedating her constantly,” Mom said, “She was like a zombie for a month. She was pretty much kept in a room by herself. That’s not treating somebody.”

The second was a state hospital, also in 2004. Dad said that there she was “a square peg being fit into a round hole.”

There were many times when a patient became too hysterical and was placed in the “quiet room” to undergo solitary confinement. Other times violence was restrained by tying patients’ limbs down to the bed.

It was from her room here that Liz completed her high school education.

She counted her blessings to know that she was a rarity in the mental health system. Of all the patients we encountered over the years of different hospitals, clinics, and halfway houses, many had been abandoned by family as either an instigator to or a result of their illness. Too many never received visitors, had no one to defend their behalf while in the system, and would live out the remainder of their lives within the stark white walls that they called home.

What should have been a stay of a few months turned into two years as my sister was fed increasing amounts of medication but stalled counseling. She was eventually ejected from the hospital simply because she had turned 18, not because she had made any improvements. She could no longer be in the children’s unit, yet there was no other place for her to go, marking what Mom called “a huge gap in the system.” With no assistance from the DMH, my parents finally secured Liz a place at a renowned private facility on private insurance.

That state hospital had a 90% success rate, my parents were told.

She was at the subsequent private facility awaiting the opportunity to undergo an evaluation period under supervision of the Massachusetts Department of Mental Health at another nearby state hospital. There, she would be released after simply demonstrating her ability to stay ‘safe’ for three months.

She eventually completed the extent of the evaluation period in the private facility, but even though she had kept herself safe for three months, the DMH ruled that she hadn’t done so in a state facility, and therefore was forced to remain at the private facility, an unequipped facility, for two more months, waiting to be admitted into the state hospital where she would undergo evaluation a second time, “even though she had already proven herself stable. Their priorities weren’t Liz’s health; it was fulfilling a technicality on a piece of paper even though it was illogical,” Mom said. It was during this period that an insurance company investigator reported she was receiving no treatment and was simply being warehoused.

Liz entered into the next nearby state hospital in 2007. Mom and Dad had been told that it was a state of the art facility at which Liz would finally be given the proper help.

The day we arrived we saw “an old, creepy state hospital. It wasn’t dirty, but old and not kept up. Walls were not painted. They did their best, but it was dark, Gothic – half the buildings were empty, and it was in a horrible, dilapidated area. The grounds were depressing; they had 20 foot high fencing with barbed wire tops. It was like a prison,” Dad – and I – recalled.

Before coming, Liz had been promised therapy daily; once there, the promise fell flat. When my parents complained, the ward supervisors “looked at us like we were crazy and said, ‘who told you that? I’ll look into it and maybe we can get her a few therapy sessions’,” Dad said, “They laughed at the complaints of not receiving adequate therapy and said that they “just watch the patient for three months and if they don’t try to hurt themselves then we let them out.”

Liz, suffering from PTSD, was one of the only females on her ward. The men were “mostly from the Bridgewater correctional facilities, many of whom were from the sexual crimes unit,” Dad said. When complaints were made to the psychiatrist about this situation, my parents were told that being confined with a number of sex offenders was “good preparation for the real world, where she might encounter a sex offender in class at college.”

The last institution my sister was in was a group home for people with mental illness. This was finally a step towards re entrance into society – here, she could attend community college and work a part time job, practically free of any supervision. But this freedom came at the wrong time. She was placed there upon being given a clean bill of health by the DMH after attempting suicide just a few weeks beforehand.

“The psychiatrist assigned to her by the DMH missed a couple of appointments,” Dad said, “He should have picked up on Liz’s recurring severe depression - she made a suicide attempt in August of 2008. She was sent for two weeks’ observation to, once again, a private hospital that was part of the same company that owned (the private facility she had originally entered into in 2004). It was there that she received a pathetically, perfunctory, poor observation and was released right back to the group home. She fooled the hospital people, which was easy to do, and was released, with no meaningful plan, no safeguards, no parental involvement, and her psychiatrist was not even part of her release meeting.”

The hospital that performed the perfunctory observation was, along with the first private facility Liz had been admitted to, a part of a private company that contracts with the state to provide assistance. A few years ago they were ripped apart in an investigative series in the Boston Globe for their poor care while returning high profits.

By her last weeks Liz had spent almost seven years undergoing the dehumanizing damage of being locked away from society, placed alongside others who had long been forgotten by the world and who had long ago forgotten the world outside. Treatment had done nothing more than drag her through a chain of false hope and quick crushing relapse over and over again.

At the group home, despite having made a recent suicide attempt, Liz was allowed to come and go as she pleased so long as she signed in and out at the facility. Therefore, on September 6, 2008, my sister was able to leave the home and take her own life at the age of 21.

She had, of course, signed out.

But perhaps this would have proved ineffective as well. When she didn’t sign back in, the halfway home was not allowed to notify my parents that she never returned. Liz had been dead for a full day before my father pieced it together on his own.

After Liz’s death, the DMH sent a worker for a routine investigation into her time in their care.

“Did they say, ‘What could we have done better?’ The answer is no,” Dad said. After hearing my family’s story, the worker rejected the offer of emails and documents recording the DMH’s mistreatment during Liz’s lifetime.

The final report contained numerous inaccuracies. It made disparaging and unsubstantiated accusations blaming my parents for their own daughter’s illness.

It was “used to say what they had done right. A client of theirs had died while in their care, and they were only looking to make sure they had met all of the legal requirements, not if they had helped her on a personal level,” Dad said.

My father’s appeal of the report was rejected three times.

After several complaints he finally received a letter from the head of DMH“expressing sorrow without accepting responsibility. I was disappointed that what we thought was going to be a sincere attempt to analyze their own job in treatment and correct mistakes, in protection of the interests of the patient, instead, in our opinion, the DMH demonstrated a desire to protect themselves from accusations of wrongdoing.

In the spring of 2013 I spoke via telephone to a spokeswoman from the Department of Mental Health. After initially promising to comment, I received no replies to my inquiries. Subsequent emails and phone calls were ignored.

Four years after Liz died, I was watching the news in the wake of the Newtown shooting when a psychiatrist describing the shooter’s genocide turned to the camera and said clearly to me, “This is the face of mental illness.”

Immediately those vivid memories of Liz and the patients she had lived with came rushing to mind. I was infuriated. They didn’t know the face of mental illness. I knew the face of mental illness. And it was suffering.

The media has ignored the significance behind the fact that the Newtown shooter cracked because his mother was planning to place him in psychiatric care. What system of care do we have when the prospect of being subjected to it is such a death sentence that patients must be forced there? What principles govern this system when it bypasses a preventative approach and only looks to correct illness after it has manifested itself in tragedy?

We can argue about the source of the faults, or we can agree that no matter what the cause, there are serious deficiencies under which countless nameless patients are losing their livelihood. How many shootings do we have to endure, how many silent and voiceless have to suffer in this dehumanizing system before we realize that there is something wrong with the DMH?

A loss of dignity is never acceptable – but when it turns into a loss of life, it goes from being a tragedy to a wrong.

I’m not telling this story because I want to complain about my family’s hardships or seek revenge for what happened to my sister. I’m telling it because Liz’s story is the story of every patient behind those walls – the only difference is that she has someone to tell hers.

Today I’m not Little Lizzie. I get to walk free, attend an elite university, and plan for my future. That didn’t end for her when she died – it ended for her the day my parents first took her to the emergency room. Hospitalization stifled life. My only hope for good from her death is that there will be reformist, more progressive reminders of the injustice that she suffered besides the sadness that colors relatives’ voices when they tell me how much I look like my big sister.