Friday, March 06, 2009

creating a change in the world

We are the people who we have been waiting for
-Alice Walker

Last night I had a great experience. I have been interested for some time in becoming involved with the local Crisis Intervention Training for police officers, which teaches them about mental illnesses and how to deal with people who have a mental illness. I have read excellent things about this program and how it has changed police departments that offer it across the country, because officers learn how to help people in crises. As you may be aware, there are an alarming number of shootings that involve people who have a mental illness and police officers, as sometimes officers who do not know how to approach a person with a mental illness in a crisis situation end up feeling they need to use lethal force. If I could help change the way one person is treated by police officer when they need help and don't need jail, then it would be worthwhile to do whatever I need to do to make that happen.

The local CIT training here is done by NAMI and other groups. I went to watch the speakers from NAMI a few months ago, when they did their most recent training. The training is a week-long process, but the speakers are there on the second day of the course. This course is done twice a year here. I was very impressed, when I went to observe, the way that the speakers (who were mostly people I know from NAMI) told their stories and fielded all sorts of questions from the police officers. I thought to myself, "This is what I was meant to do". To a certain degree, I do believe that life has purpose, and that their are reasons why things happen. I think it is possible that the reason I have had to deal with Schizophrenia all these years is that I was meant to help raise awareness about it and combat the stigma that exists in society.

So, some time ago, I wrote down the story of my mental illness in order to be able to submit it to NAMI for their review. Last night I got to sit down with some of the board members of the local NAMI chapter and read my story, and discuss my illness. I disclosed details of my life in this recounting that I do not normally share with anyone other than my therapist and those of you who read this blog. I was nervous, partly because I am always nervous about speaking in front of people, and partly because the memories are still painful. Also, I still have a part of myself that fears disclosure and fears the labeling of my delusions and hallucinations as what they were and are - things that are not real, things that are a part of psychosis. A part of me wants to hold onto them, because I fear the repercussions of disclosure.

I cannot tell you what an empowering, life changing experience it was for me to read this story out loud to three people who did not laugh, did not judge, did not act shocked or embarrassed by the personal details and the telling of my truth. They listened, they paid attention, and after I was finished, they gave me feedback, which was mostly positive. They told me that I had an amazing, powerful story, and that it would change people's lives if I told this story to the police officers in the CIT class. They told me that they were surprised how much I understood my illness even though I still have the illness, and that it was interesting that I can talk about delusions as what they are. They said that I remembered quite a bit very well, even from periods when I was delusional. Overall, they made feel like my story mattered, and that I could create a positive change in the world by telling my story. They made me feel I had merit, and that - as the poem says - I could "be of use". I left this meeting feeling excited and honored that I might be included in the CIT training program, where I might really be able to create a positive change in the world.

Telling my mother about this experience on the phone, I was happy to hear that she was actually proud of me for it. She said something that was very kind. She said, "I am more proud of you for this than I ever would have been if you graduated from that Smith College". It was nice of her to say that, and the fact that I could have ostensibly attended that college is still a sore subject for me, and was something I had mentioned in my speaking to the board members. That year - the year I ended up in a homeless shelter instead of at Smith - was the year my delusions began. It was a pivotal point in my life. It was a time when I lost something that really mattered to me a great deal, and when my confusion about reality began.

The truth is, I have lost a lot to this illness. I have lost a lot of things that I could, potentially, have accomplished, without this illness in my life. To have that fact validated, and to have the experiences mean something is a great feeling. I do not want my entire story to be shared only on a blog anymore. I want to tell it to more people, to explain what this illness is, what it does, how it affects people who have it, and what the world could do to improve the lives of people who have mental illnesses. This is just a starting point.

"To Be of Use"

by Marge Piercy

The people I love the best
jump into work head first
without dallying in the shallows
and swim off with sure strokes almost out of sight.
They seem to become natives of that element,
the black sleek heads of seals
bouncing like half submerged balls.
I love people who harness themselves, an ox to a heavy cart,
who pull like water buffalo, with massive patience,
who strain in the mud and the muck to move things forward,
who do what has to be done, again and again.

I want to be with people who submerge
in the task, who go into the fields to harvest
and work in a row and pass the bags along,
who stand in the line and haul in their places,
who are not parlor generals and field deserters
but move in a common rhythm
when the food must come in or the fire be put out.
The work of the world is common as mud.
Botched, it smears the hands, crumbles to dust.
But the thing worth doing well done
has a shape that satisfies, clean and evident.
Greek amphoras for wine or oil,
Hopi vases that held corn, are put in museums
but you know they were made to be used.
The pitcher cries for water to carry
and a person for work that is real.


  1. That class sounds very interesting, something I would like to get involved with. I agree with you, I want to share my story to fight stigma too, beyond my blog.


  2. Jen,

    I knew you would get to this point. You are a very valuable person and I'm so proud of you for sharing your story. You do have great insight into your illness and what's more you are smart and have a talent with words. You have a special ability to help those in need. Perhaps you've found your calling. I believe you have the courage to do this. Go for it!


  3. Hey there, sorry, but I've actually been reading earlier posts. Like, the original ones you wrote.

    There's that noise again.

    I'm just wondering, were you aware that were developing the illness? It's just that you always get told 'crazy people don't think they're crazy', but I'm like, hyper-aware.

    Thanks for any help! And I love the way you write, it's really free form, like jazz, spontaneous prose, Kerouac, Morrison. I love it.

    Thanks. That noise has gone now. Maybe it was a pipe.

  4. Thanks for all your encouragement and support, everyone. I really do appreciate it that people take the time to read these posts and comment on them.

    Nowhereman - I wasn't aware I was developing this illness. I was delusional a good six years (age 24-30)before I knew what it was. I didn't get diagnosed till I had been delusional for years. I was first delusional about having been abused as a child, and so I was totally misdiagnosed by people who didn't realize that I was delusional and thought I was dissociative and having post-traumatic stress from this alleged abuse. When I realized the abuse probably never happened I had already royally screwed up relations with my father and some other family members because nobody understood I was psychotic, particularly not me myself. I did, however, realize I had a whole lot of things in common with the guy (John Nash) in the movie A Beautiful Mind. In my delusional mind, this came to make me believe the movie was about my life or about my run-ins with the CIA which I thought were happening......I never thought, "I have Schizophrenia". Not until after I was told, "You have Schizophrenia" in a hearing with a judge inside the hospital. In fact, I don't know how I managed to have so many hospital trips without ever being informed of what was wrong with my brain, so it is possible that I was told, but I don't remember because I didn't have the capacity to grasp what it meant at the time.

    I hope that answers your question. Thanks for stopping by here.

  5. Hey, thanks a lot for that.

    With me, I've been in a real state for nearly two years, but I've tried to just deny that anything was wrong, hoping that would help. I convinced myself that my vision was 'wrong' because I was going blind (I still think that, I think), and that I was having these ridiculous thoughts because I was going blind, but was worried that I wasn't going blind, which caused me to think I was going crazy. It's a difficult thing to describe.

    It's only really through reading blogs like yours and Valash's that it's begun to sink in that I do need some help. So for that I thank you!

    It's just that because I've been conscious of what's been happening to be, no matter how deluded and strange my thoughts, senses and general self has been this past year or more, I was wondering whether it was in fact possible to be aware of it.

  6. NoWhereMan~
    I understand about thinking you're going blind. I thought I was pregnant (by some kind of act of God) for the greater part of four years. Literally. I went to all sorts of doctors trying to get someone to "admit" to the conspiracy of my pregnancy that they said was not there. This took a long time to get past - even when I was on medication. So I understand about delusions that stick.

    If you realize you are delusional, you have already won half the battle. The rest is just ridding yourself of the delusions. It can take some time for that, and for me, it never happens if I'm not on medications that work for me. Are you taking any medications? You might want to see a doctor if you haven't already.

    Good luck~

  7. Hey Jen,

    No, I'm not on medication at all, I've never had the courage to seek help until I stumbled across yours and Valash's blog a fewa days ago.

    I got an eye test a while ago, expecting them to say I was going blind, and nearly cried when they said I was okay. I've been to the doctor's once, and was told that there was nothing wrong with me. On that day, I cried all the way home.

    As I've said, it's hard to describe the way the world looks and sounds and smells to me. Almost like looking at a painting.


    And read my blog :P


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