Friday, March 23, 2018

Grappling with grief and grieving with purpose

Many people have heard about an almost unspeakable incident that took place in our little town about a month ago. Without going into much detail, a completely innocent 22 year old woman was killed while studying at the town library in broad daylight by a man who had for years suffered from severe mental illness. Though I don't think a diagnosis has been released publicly, it is clear that the 24 year old perpetrator had some form of schizophrenia, most likely paranoid schizophrenia.

Like many others, this case has consumed me for the last several weeks, and grief has taken the path of guilt and anger and sadness and frustration. The fellow lived three houses down from us, directly across the street from our friends, within a neighborhood swimming with children and elderly folks and all sorts of people in between. It was a devastating shock to learn what had happened to that dear girl at the library, but horrifically, it was not really a surprise.

Six months before this incident, one neighbor even told the DA that Jeffrey was going to kill someone.

People in our neighborhood learned at different times in various ways the challenges this man was facing, I've now learned, and we tried to speak up, begging for him to get help. Some of us went to the police, some went to the hospital after one attempted break-in to voice the concerns of the neighborhood. Members of our neighborhood talked to the nearby elementary school, the DA, and his parents. He was hospitalized at that time, to our collective relief, but released about a month later and told he was on probation and needed to be medication compliant. Clearly, he was not.

So yeah, there is anger. At that time and now, I feel the same -- that we were left to just wait for the next event, to live next door to someone with violent tendencies combined with an illness that pushed him to carry through with internal commands that were out of his control. I feel his parents were let down by professionals who should have seen their desperation and taken their hands and surrounded them with support. And I'm left wondering why nobody did.

Does our state offer help for people who are not an *imminent* threat but who will likely decompensate at any time and become dangerous again? Are there enough beds for people who desperately need more long-term care and stabilization? Do the limitations of insurance interfere with patients' ability to get the help they actually need?

Did anybody honestly think his parents could manage him, an adult who was living under their roof but who hadn't spoken to them in years? They were failed, he was failed, and most devastatingly, Deanne and her family were failed. I cannot point fingers; there is no one person to blame. But there is a system that needs fixing.

When I was 22 years old, a Psychology major with a BA in hand, I took the first job I interviewed for in my field. I was a staff member at a day treatment center for mentally ill adults in MA. I was a member (client) advocate and also helped train folks with mental illness to get back into the working world. My starting salary was $21,500, which is the equivalent of about $10/hr or $300/week. My pay increases were maybe 10 cents an hour. By the time I left three years later, I was up to almost $23,000/year. I remember noting to myself that I could make more if I bagged groceries at Stop and Shop. I thought that was odd, but put my head down and did my job. This is the kind of payment many of our mental health professionals are receiving.

I spent three years working directly with chronically mentally ill adults. At least half of them had schizophrenia. Other diagnoses were bipolar disorder, depression, obsessive compulsive disorder, and other debilitating anxiety disorders. My job was to engage them in business type work, the idea being we could get back out into the working world through business unit training - data entry, cash register, filing, book keeping, photocopying, whatever I could get them interested in. In some cases, it was very successful. There are very few things better than seeing somebody who is struggling begin to thrive again. Other members were less invested in the learning process, and got bored quickly, essentially sending me the message that this was dumb and they just weren't interested in working. So we socialized.

People with severe mental illness are just like people without severe mental illness. Some of them are very likeable and a complete joy to be around, and others have a way of calling upon your self-control. With some people you have great chemistry, and with others you struggle to make it work. Some folks soothe you with their presence and some make you anxious. Some are polite and do their work and keep busy, and some throw their hands in the air and say they have too much other stuff going on and can't participate.

One of my favorite members was Maggie*. She drew pictures all day long, always of little children doing joyful, childlike activities, like playing with puppies and picking flowers. She was probably in her 60s but her face had literally never aged. Her hair was grey and long, but her face was like a six year old child. Not a wrinkle anywhere and her cheeks were rounded, her eyes wide and innocent. She looked exactly like the pictures she drew. She made cards for my parents on their birthdays and anniversaries. She illustrated and signed the cover and I wrote my message inside. Maggie had schizophrenia but when she told me about her hallucinations, she described happiness. Dolphins and mermaids in an open sea. Beautiful voices singing in her head.

One gentleman, Bob, who also suffered from schizophrenia, could have been anywhere between 50 and 80 (he looked so aged, but I think he actually wasn't so old at all). He wrote papers every day, signed them, and handed them over to me. A lot of times they were messages from the CIA or the FBI. Sometimes they were poems. A lot of times they were extremely complicated math equations that may or may not have made any sense, though they bore a striking similarity to the sort of messages I used to see on my (physicist) father's white board in his office when I was growing up. Sometimes the writings by Bob were short stories about his childhood or his family or just how he was feeling that day. One day the messages were complete word salad, nonsensical but always intriguing; the next day, the writings made all the sense in the world. He wrote jokes sometimes, and when I didn't understand, I was never sure if it was because I just wasn't quick-witted enough or if they just plain didn't make sense to a person who wasn't in his head. I saved his writings. Bob had my heart.

4-15-2004 Clubhouse I took a couple naps. I took off my hat unzipped my
coat with only two sweaters. And I looked like I belonged inside.
Often I would connect with somebody and we'd develop a mutual trust, only to see the illness destroy it in one way or another. Lena and I were about the same age, had a similar sense of humor and really enjoyed one another's company, which we built over the course of a year or so. But then, suddenly, she decided I was out to get her and to destroy her relationship with her boyfriend (whom I had never met), that I was plotting against her, trying to steal all that she had. She stopped speaking to me, and then one day, she stopped speaking altogether - to anyone - becoming catatonic. She sat in the freezing cold staring straight ahead for entire days. Finally, she was admitted to a hospital, but I think I left the job before she ever came back. I went to visit her once. The lounge at the hospital was awful. Cold, devoid of color or warmth of any kind.

Another man I adored went off his meds about two years after I met him. He was a gentle giant who talked to me about his family troubles and the band he used to play in and his anger with the side effects of his medication, especially slowness in thinking and tardive dyskenesia. He went off his meds over the course of a couple weeks, quickly decompensating, telling more and more wild stories with greater frequency and intensity, usually related to his superiority to all humans. He told us he was the chosen one. Nobody laughed. It was a terrible sign. Shortly thereafter, as lunch was winding down one afternoon, he stood on top of the tables and declared he was Jesus, son of God, and the almighty ruler. The police came to bring him to the hospital, and he ran and it took at least four giant firefighters and policemen to tackle him to the ground. And there he was, my tender-hearted friend, lying on the ground in handcuffs, completely out of control.

I got to know around 150 people, on some level, with severe mental illness in the three years that I spent at that job. On any given day, I would be asked repeatedly, "Are you an Argoyle?" by the same person. She would tell me she loved me just as many times. You could actually see her fighting with her voices, trying to swipe them away, so that she could just have a normal conversation. Several people walked around with headphones all day. It helped a great deal in actually drowning out the voices. So many people were cheerful and happy in the face of their challenges.

And not dissimilar to the real world (especially back then), I got harassed on some level just about every day as well, with folks constantly stepping over the line and me giving them the benefit of the doubt. I'd be told I was pretty and that I was ugly, and that I  had gained weight, and that I was too skinny. Every flaw in my skin would be pointed out, every aberrant behavior would be noticed ("Why aren't you smiling? Why aren't you eating?"). I was 22. I was making $10 an hour. I started losing my mind.

But there was only one person I ever felt could actually physically hurt me. Every time I walked by him, he yelled at me, "Fucking bitch! Whore!" and you get the idea. He was fighting voices in his head constantly. He conversed with them as if they were standing right in front of him. He laughed with them and told them to fuck off sometimes and he swatted at them and gave them the finger and gave me the finger and gave everyone else the finger, but he stayed on. He liked my boss and she didn't feel afraid for her safety or ours. That was not the right place for him, but I don't know what his options were. Which brings me back to today.

I'm sitting here processing a talk I went to last night called "Mental health in our community: Let's talk about it." On many levels, it was fantastic. Families (and there are SO many families) who are struggling to find resources and help actually have lots of options (with the right insurance!) offered by the Department of Mental Health (DMH). For children and young adults, there is in-home therapy, peer advocacy programs, mentorship programs, transitional support, and so on. For adults, there are clubhouses (where I worked), advocates groups, respite houses, group homes, section 8 housing, day treatment program, etc. If you are interested in learning more, this website is helpful, to an extent: Mass.gov.

What was missing from last night's talk, however, was an honest discussion about the group of people who are falling between the cracks or not getting the services they need. Maybe they are trying but there are no beds available, maybe their insurance doesn't cover what they need so they are stuck. Maybe they simply don't know how to access resources or seek the help they need (which is why last night's talk was so useful). I am thrilled to know about more places to turn if anyone in my family is in need now... if insurance covers it (?).

But we also need to talk about that relatively small group of people who have violent tendencies and show imminent threat, get hospitalized, and then released when considered no longer dangerous. One day, three days, even twelve days in the hospital cannot stabilize a person with psychosis. I am not suggesting we turn all the way back to institutionalizations. But I am saying there is a gap here, which leaves patients, their families, and their communities wondering, "What now? So we just wait for the next thing and hope it's not *the* thing we are all so afraid of?" Could our state not provide us with an Assisted Outpatient Treatment program, where patients are mandated to have a mental health professional come to their home and make sure they are following a treatment plan? Forty-six of our 50 states provide this service. Massachusetts is not one of them. Mental health advocates in MA fight very hard for individual rights, and right now that appears to be valued more than community safety.

Outpatient commitment—also called Assisted Outpatient Treatment (AOT) or a Community Treatment Order (CTO)—refers to a civil court procedure wherein a judge orders an individual diagnosed with severe a mental disorder who is experiencing a psychiatric crisis that requires intervention to adhere to an outpatient treatment plan designed to prevent further deterioration that is harmful to themselves or others.

Last night, the Director of the Department of Mental Health in MA was asked, how can we make sure this kind of thing doesn't happen again? The answer was community involvement. "Speak up! Let authorities know," he said. I don't accept that. We did speak up. Time and time and time again. He told me the answer was to just keep pushing. What??? We pushed until he was hospitalized and then we trusted the mental health system to take over from there.

I do not blame the police, not in the least. But somewhere along the way, when institutions were closed and people with severe mental illness were released, some folks were left to fend for themselves, and too much shit has gone down since, and it's time to pay attention.

Maybe we start by advocating for an Assisted Outpatient Treatment system, covered by the state. It is hard to know where to begin, but if the statistics are true (139 people were killed by a person with mental illness in the years between 2005-2015 in MA), then I'm thinking this is not something we ignore. I brought these numbers up with one of the DMH reps last night after he told me this sort of incident is rare. He looked at me funny, but a couple other DMH folks seemed to know just what I was talking about (see article below). An average of one killing a month by untreated mentally ill people is not rare.

I would like it to be a given in our world that most - the absolute vast majority - of mentally ill people are entirely harmless, but we're not there yet. Much of public commentary on mental illness is ignorant and frankly, embarrassing, and I don't believe for a second that those very same people don't know at least one person who suffers from mental illness. Just... Eyes Up, people. If we can even get there, that would be a huge step. I feel, then, like it is a risk for me to stretch this further, to take this next step, to acknowledge that mental illness can, in some cases, be a danger, if left untreated. Severe mental illness combined with a tendency towards violence can create situations like our town has experienced. We can prevent this.

We are all just people, and truly, we are mostly all very good people. We all need help at one time or another. It's just that some of us just don't know how to get it.

If you have time, please read this Spotlight article, which is about the best I've found on this subject. It is SO worth educating ourselves on this:

https://apps.bostonglobe.com/spotlight/the-desperate-and-the-dead/series/families/

Our State Rep, Michael Day, seems very open to talking about this. Contact him! Let's think this through.



*names have been changed