Friday, March 11, 2011

Honoring the lives that were lost to institutions: two projects on people locked away in state mental hospitals

Elyn Saks, in her excellent autobiography about life with Schizophrenia, that came out a few years ago, The Center Cannot Hold, made a statement about how she received flowers when she was in the hospital for a medical procedure, but whenever she was in the hospital for psychiatric reasons, she never got flowers or cards. I loved that she pointed this out, because it is so true. Few people in psychiatric wards and psych hospitals get flowers, or cards. Many never get a visitor. When I lived in Virginia, I had several hospital trips that my family in Florida didn't know anything about, and I didn't hear from anyone. I never got flowers or cards or any visitors in those hospitals, except when a couple former patients from a previous hospital stay came back to visit me in one of my other hospital stays.

In Florida, my mom was always pretty good about visiting if I was in the hospital. Once a former patient came to bring me a copy of Surviving Schizophrenia, and some art supplies to have something to do, because I was in there for the long haul. Another person who was in with me, got released, and weeks later was allowed to come back and visit. Two coworkers visited me and when I told them I had just been diagnosed with Schizophrenia, I never heard from them again. I got flowers from my mom, I think it was, at one hospital, and they wouldn't let me keep the flowers in the vase in my room, so they had to stay at the nurses' desk. I think I eventually got to have them in my room by putting them in a plastic water pitcher.

I've been in hospitals at Christmas, a really depressing time on a psych unit. My mom brought me presents, and I had to open them all to the nurses desk, show them to the staff and only if they were approved could I keep them. I wasn't allowed to keep more than three sets of clothing, so most of what she would bring me, would be sent right back out with her. Candy, for Christmas, could only be kept in the locked up kitchen and you could ask for some of it at a snack break if you got one. Christmas cookies, you couldn't keep because they didn't come directly from a manufacturer. I saw a lot of people bring in stuff for patients that the patients were not allowed to keep. I saw a lot of patients who nobody ever brought anything for. These people would be stuck walking around in hospital gowns.

My mom would bring me Diet Coke sometime, because it was one of my favorite things, but if it wasn't in a plastic bottle at some places, you couldn't have it. At other places, you couldn't have plastic bottles, so you could have it in a can that stayed locked up where you couldn't get to it. And then you could get some at mealtime upon request. During my longest hospital stay, which was the one where all the people above visited me and the one where I definitely got more visitors than ever before, a nurse actually brought me a whole case of Diet Coke, and sneakily locked it up in the kitchen where I could get it at meal times. Another nurse brought me an extra pair of glasses she didn't need, because one of the meds messed up my eyesight so badly I couldn't read at all.

But for the most part, being in a psych ward, you spend a lot of time alone. I remember hoping my dad would call me, and how sad I would get when he didn't. I remember the one trip where he did visit me, and what a big deal that was for me, because it meant he at least cared about me right then. That was after I almost shot myself. I made my dad a card, and he cried a little bit, which is one of the only times in my life he has ever done that in front of me. But I spent months after that in the hospital where I didn't hear from him much, and I always wished he'd come back. I think the hospital, once he saw what a psych ward looked like, really freaked him out, and he didn't want to return there if he didn't have too. Can't say I blame someone much for that.

The walls of psych wards are typically blank painted cement or otherwise sturdy, and blank walls. There is little artwork. I always used to decorate my room's door with some kind of artwork. I'm not an artist; when you're really sick you find pleasure in little things, like crayons and paper. It would be the only way I could make myself feel comfortable there.

So when I came across this art project online the other day, it warmed my heart. It really did. If I were an "installation artist" (and can't say I really know very well what that is), this would be a project I would want to do. When Anne Schuleit wandered around the grounds of Northampton Hospital, near Smith College where I almost got to go to school once, she became interested in the stories that were left in this abandoned mental hospital. She set out, later, to transform an abandoned psych hospital for two days of celebration, where classical music was blasted throughout the halls, and former patients got to tell their stories. When she realized that people in mental hospitals rarely get flowers, she decided to fill an entire, abandoned mental hospital with flowers. And that she did. You can see her amazing project, Bloom, here. It's a beautiful idea, and a wonderful work of art and life, to do what she did there. I want people to recognize the efforts like this that some folks make to remember those of us with mental illnesses who spent our lives locked away in hospital wards, forgotten and abandoned by the world, treated like less than human, and certainly like less than a person in a hospital for a medical reason.

Reading about this beautiful project reminded me of another project, one that I first read about a few years ago, where people cleaning up an emptied psychiatric hospital came across tons of suitcases that were left behind by former patients who spent their lifetimes locked up there. They set about to tell the stories of the people who owned some of the suitcases, and created a website about it, The Lives They Left Behind: Suitcases from a State Hospital Attic. Then they created a book, and a traveling exhibit to showcase the stories of these poor people and to give their lives some dignity by telling people what they learned from the contents of those suitcases and the records of the people who owned them. If you've ever driven by an abandoned state mental hospital, as I did once in New York, you understand it's a scary place. I also walked through the halls of the gigantic Sheppard Pratt Hospital, which is still open and running, years ago when I saw a therapist there, and it was scary too. There is something terrifying about knowing that people spent years, and even lifetimes, locked up in these places for illnesses like the one I have. For all the flaws with community mental health -and there are many - I would not want to spend my life in a hospital, warehoused away from society as if I were just a big acne scar on the face of humanity.

So I think it is honorable that people have done projects like Bloom and the suitcases project, and would love to see that suitcase exhibit in person. Please take the time to explore these links to honor the memories of those whose lives have mostly been forgotten. For all my complaints about my lonely, depressing hospital stays, I was very priveleged, in fact. I did get visitors sometimes. I did get out. I did not get forgotten by the world. I did not have to stay there for years, or for life. I got to leave. Which is more than can be said for people who went 100 years, or even 50 years, before me. People got kept locked up then, and their history books were never written.

Side Note: I wrote a post for the Understanding Invisible Illnesses (UII) blog of Jennifer Pettit, and would love for you to check it out.


  1. I remember that most of my hospital admissions I would never see anyone. I was lucky in that I never was in hospital for long but still, the time in hospital seems to go so slow. I had a look at the links you posted and I loved the idea of someone putting all those flowers throughout a closed hospital is amazing. It literally would have taken days to do that. Thank you for posting the links to both projects. I think these kinds of things are really important to show awareness of people with mental illness but especially those without family or friends to come and see them or think of them, in their time of need. It can be very lonely in hospital.

  2. I have been fortunate and not so fortunate in only being in a hospital overnight over 12 years ago when I first became delusional and paranoid with schizophrenia. Fortunate in that I managed, with the help of my family's financial support, to go through the worst of my illness without disturbing anyone too much. Unfortunate, in that not spending time in a hospital left me isolated from other people suffering from mental illnesses in my rural community. I also didn't take the medications for three years and had three breakdowns in that time that might have been averted if I had set up a routine in a hospital. Ideally many of us with mental illnesses should be able to cope with outpatient services -- therapy and support groups and that is probably the best long term solution. But sometimes things get so bad that a hospital stay is necessary and beneficial. I'm glad that you got the help you needed Jen.

    I stopped over at the Understanding Invisible Illnesses blog and read your entry and left a short comment. Well done Jen! I hope more people find your blog through Jen Pettit's blog.

    I also got your care package the other day. Thanks so much for thinking of me and taking the time to mail some cool stuff off to me! You are so kind. I want to mail a few things off to you in turn.

    With love, Kate : )

  3. I couldn't agree more. I never got any flowers of get well cards when I was hospitalized a few years ago. It was the exact opposite--no one asked how I was after I left, no flowers, no phone calls, and virtually no support except my wonderful parents and angelic wife.

    My siblings belong to a religion that worships the family and talks constantly about maintaining a strong family. However, they never ask how I'm doing about anything let alone my condition.

    I'm the dust to sweep under the rug and deformed child to lock away in the shed out back. It gets depressing to say the least. Thanks for the thoughtful post and for raising an issue that gets little light.

  4. Sairs - I agree that those two projects were really neat and it's good to be aware of things like that. I hope some more people find out about them from reading this post, or from some other way.

    Kate - Thanks for reading my post at the U.I.I. blog and leaving a comment there. I appreciate it!

    H.B.W. - I know what you mean about family. My dad is not really interested at all in how I'm doing and I rarely hear from him. I'm sorry your siblings are like that. Funny how religious people often don't follow the guidelines of their own religions.


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