Using my voice

Someone left a comment that she was looking for a post about my speech and how it went; so here you go.

Last Tuesday, as a member of NAMI (National Alliance on Mental Illness), I participated in my county's Crisis Intervention Team training by giving a speech about my life with mental illness. I took all your comments on this blog about what you would like the police to know into consideration, and I whittled down my 45 minute speech into a 20 minute one. I started out with descriptions of my life in the early days of psychosis, when I was 24 and had no idea I might be hallucinating or experiencing delusions. I went on to describe my many hospital trips, my horrible symptoms when I was completely psychotic, and my dealings with the police in various places where I lived.

I made a couple of key points that I wanted to be clear about: One, people with mental illnesses are far more likely to be the victims of crime than they are to commit a crime. Two, a person can seem completely fine even when she is psychotic and definitely not fine. Three, a person can be intelligent and psychotic at the same time. Four, mental illnesses make people (and women in particular) easy prey for criminals who will victimize us. Five, I can stand in front of a group of 50 police officers and describe my battle with Schizoaffective Disorder, and make logical sense, and clarify misconceptions, even while I still have Schizoaffective Disorder.

I didn't number or outline these points in this way, but these points were interspersed in my speech and these are some of the main things I wanted to convey. I also made the point that being psychotic is being terrified all the time, every day of your life (in my experience). I told them that I was always afraid of the police (which I still am, actually), and that when I was spoken to by police officers during situations that arose, I was often able to pretend as if I was not sick, because I knew enough to not discuss certain things most of the time in those situations. But I also told them, when I almost shot myself and was taken in handcuffs by the police to a hospital under the Baker Act (Florida law for involuntary hospitalization), and then kept hospitalized for nearly six months, that this was the best thing that ever happened to me. That hospital trip saved my life, as I was in the hospital long enough for the medication to begin working. And once it began working, I began to feel more, and more like myself.

I told the police about some assaults that happened to me, and I was very nervous, particularly about mentioning that. I told them about the car I stole because the voices told me I had to do it, and I had been nervous about mentioning that too. While I spoke, my hands were shaking. When I was finished, I tried to get a soda out of a machine and couldn't hold the money still enough to put it into the machine, as I was still shaking! . However, people in the audience told me I did not look nervous. Everyone who commented to me about my speech said I did a great job; that was nice to hear.

In the women's restroom, after I was finished speaking, two Sheriff's deputies said to me that I was brave, and that they couldn't have done what I just did if they were me. Then one of them told me about her sister. She said her sister is 34 years old (my age), and has Schizophrenia. She is nearly catatonic, and unable to care for herself, so she lives with her mother. This officer said that hearing my story gave her hope that her sister might be able to get better some day. This made my day! I will remember that comment for the rest of my life. The picture at the top of this post is the two officers I just mentioned, and myself at the 10th anniversary celebration and graduation for the Crisis Intervention Team training last week.

At the tenth anniversary of our CIT program, the chiefs of all local police departments (or most of them, anyway) were present as was the sheriff of the county. The officers who took the training I helped with were from Pinellas County Sheriff's office, Largo police department, Clearwater police department, and Pinellas Park police department. The chief of Pinellas Park's department gave a speech, in which she described incidents when people with mental illnesses were shot and killed by police officers who did not have the training to handle situations with people who have mental illnesses properly. She made the point that CIT saves lives. And that is why I wanted to do it, and am really glad I did. If they ask me to speak again in the future, I will do so.

I need your advice!

Hi, folks. With this post, I am going to ask you a favor. I would really like some feedback from you, particularly from any one of you who has read more than a couple of my posts here.

Next week, after I get back from a convention I am going to, I will be speaking in front of a large group of local police officers as part of NAMI and the Crisis Intervention Training program here in my county. I have never done much public speaking, and have never done any that involved talking about my mental illness, so it's safe to say that I am sufficiently nervous! I look forward to doing this speaking, because by educating police officers about mental illness I can help others and make some small difference in the world.

So, here is where you all come in! I need some input on what I should point out with my twenty minutes of speaking. I have written down what I plan on saying, but I am making adjustments to it, because some of what I wrote was superfluous and I only have twenty minutes to say everything I want to say. The first time I practiced this, I took 45 minutes to read everything I wrote. After that, I got it down to twenty minutes, but I want to fine tune it a bit, and make sure I'm not leaving out anything important.

If you were me, what would be the main things you would like people to know about mental illness and your experiences with it? What would be the points that you would definitely focus on, or emphasize the most?

And if you have read much here, I would appreciate your response about what I could say that might have the most impact as far as getting people to understand mental illness.

Thank you so much in advance for any advice you can offer. Also, thank you to everyone who has ever left comments here. I read them and appreciate them all a great deal.

be the change you want to see

Had lunch today with other officers of my NOW chapter (National Organization for Women).
The discussion was interesting and productive, so it was a worthwhile experience. I am excited about the prospect of planning activist work within this group, and I like getting to know other members who are all so knowledgeable and also passionate about women's rights, which is a subject that has been dear to my heart since I was born. We are planning on showing the movie, "Sicko" in a couple months, as part of the call for a national healthcare plan in this country.

Directly after that I went to a meeting for the consumer council of a mental health organization I am part of. I cannot say that meeting was as productive as it could have been, but I did present an idea I've been thinking of for a long time. I want to collect books and magazines and games and give them to the local psychiatric wards. The hospitals I've been in here (and I've been in all of them) had no reading materials or things to do. The last one I was in was particularly drab, and that's when I came up with this idea.

I want to actually put this into motion, but when in a group of people, sometimes it's difficult to get things done. I don't feel like it's a project I want to take on by myself. I want the group to do it. That is partly because, the group is a place these patients can go to when they get out of a hospital and they need support and assistance or to get involved with advocacy for people with mental illnesses.

I feel like what this organization lacks is an outreach effort to let more mental health consumers know that this group exists, and that it exists specifically for their benefit. What is the point, after all, of holding meetings, when only five people know about the meeting and only a few show up? I mean, I don't think this group is doing anything to let people know about our consumer council meetings, and I have always hated the pattern some organizations seem to go on where you have to just find out about the group because you know somebody who is in it.

It is a wonderful organization, but I have found that my ideas to reach out to the public and let other mental health consumers know we exist have all been shot down. I wanted to start a Facebook group, but the board of directors shot that idea down, and so did the group's president. Somehow, they think Facebook is not a safe place to diverge that people have a mental illness. Well, how do you end stigma against mental illnesses if you are afraid to even talk about it yourself?? I don't understand this logic, and I think it is simply the result of people who are older and out of touch with technology, so they don't have a clue what Facebook even is, but they are the ones who are making the decisions about it.

Working within groups is not always easy for me. I find difficulties and frustrations in most of them. I think that is the nature of the beast. Organizing is hard, and most people don't know how to do it very well. I mean, some groups actually spend time teaching how to have a group meeting with consensus process. I think that's amazing, but there are no groups that do that where I live. And the groups I am part of do not use consensus process. I feel consensus process is the most effective organizing method there is, as far as decisions go. Most of the world, however, doesn't seem to agree with that.

I also find some difficulties in groups like NOW because the other people in the group are usually more educated than I am, more gainfully employed as well, and married with children or in a serious relationship of some kind. I am none of those things, except for part time employment and some college in my background. The problem is, I do not always feel at ease telling people that the reason for that lack of progress in the socially accepted meaning of the term, "progress", is that I have a mental illness. I have, however, told the president and vice president of my NOW chapter, and neither of them was judgemental or rude in the least.

A while back, when I went to my first NOW meeting, someone there made a joke about something being crazy and "schizophrenic". I felt so irritated by that, I wrote an email to the president telling her I was offended because I have Schizophrenia. She was kind in response, but I felt a bit odd having written the letter, so I figured I'd never go to another NOW meeting. Eventually, I did go to another meeting, and now, oddly enough, I'm the secretary. I wanted to mention that to you here, because I feel that whatever each of us can do, in our own ways, small and large, to break the stigma that enshrouds mental illness, is something we can and must do. Ghandi said to be the change you want to see in the world. That involves taking action.

We can't sit silently by and not participate in the dialogue about mental illness. We must speak up. Perhaps we will tell someone about our illness and forever change that person's view of what a mentally ill person looks like or acts like. Stereotypes are so prevalent and so damaging, as most of the media portrayals of people with mental illnesses show the people as villains and psychopaths. We must stop this stigma. And telling that one person, and changing that person's world view in some, small way, is being the change we want to see. So each of us needs to tell, in my opinion, whenever we feel comfortable doing so.

My four-year pregnancy

This past Tuesday:
It's finally here. The day my therapist has been anticipating because of the potential positive outcome it will have for my life. Just think, she says, of the fact that in six months you could recover your health.

I am on a bed, where I am given an endoscopy. A tiny microscope goes down my throat while I sleep, thanks to the wonders of modern medicine. This is to check, with a biopsy, to see if I have Celiac Disease, a condition which would cause me to have trouble aborbing food and medicine, which would explain why the only antipsychotic that really works for me is the kind you get intravenously. So here I am. I fall asleep. After what seems like a minute, I'm awake. "When are you going to start the test?" I ask. "We just finished it," a nurse tells me. "You're just waking up."

Soon the doctor - a gastroenterologist whose wife is a psychiatrist at the community mental health center I go to - comes to talk to me briefly. He says I have gastritis. And when he says those words, I suddenly remember. I've heard them before.

Back to 2004:
I'm in Morton Plant Mease hospital, getting a battery of test that lasts several days. One of them is an endoscopy. When I wake up, they tell me I have gastritis and nothing else wrong with the digestive area. "Did they take it out?" I wonder. "Is the tomb baby finally gone."

I'm floridly psychotic, which is how I ended up in this hospital having all these tests performed. I'm convinced that I'm pregnant. I've been convinced of that for a few year. Yes, I really believed it. I was completely sure that I had been forcibly impregnated at one of the hospitals I was in, and that I was going to have to produce a baby for the New World Order which would then be taken from me, dead, and used as food for humans. This is the kind of thing I thought when I was floridly psychotic. Psychosis and logic don't mix well.

Since the "breeding" I think I'm being forced to do is a conspiracy by the entire country, especially the medical profession, I am convinced that there are procedures women get done, which are actually birthing procedures, and not the medical procedures everyone else believes they are. Words have important meanings to me which would not make sense to you or anyone else. There are clues in words. I am constantly searching for clues.

ENDoscopy. That sounds very final, doesn't it? That sounds like the end of something. I know it is code. I know that the only way for me to get the dead baby taken out of my womb is to have the endoscopy. If that doesn't work there are other medical procedures to get done which will work, I'm sure. (And in that year I had a colonoscopy, a laparoscopy surgery, a gall bladder test, other tests, and nearly had my gall bladder removed to get rid of the baby).

I wake up. The gastro (GAS, as in death chamber) enterologist says to me, "You have gastritis".

I soon forget this obvious lie and get back to the business of baby removal. Since the baby has been inside me for four years, I know it's dead, and I coin the word, "tomb baby", as I believe my womb is a tomb.

I takes a lot of medication, a lot of convincing by other people in hospitals and outside of the hospitals, a lot of thought, careful consideration and time for me to begin to understand there is no baby there. Finally, that particular nightmare ends. But I never forget. I never will forget.

Today I remember every pregnancy center I called or visited, and all the doctors who told me I was not pregnant. I remember the woman from my mom's church who ran the Christian pregnancy center, and how she listened at length to the long lie I invented about how I accidentally got pregnant, because I believe if I tell the right lie, someone will do something about the tomb baby.

I remember the pregnancy clinic I visited to get an abortion, and how they chased me out and locked their door, when I wouldn't stop insisting that they immediately give me an abortion.

I remember the woman at the adoption agency who I was going to meet so she could discuss me giving up my baby.

I remember how the names of medications had special meanings, how I was convinced medications were used to cause pregnancies and abortions, and not for the stated purposes they had. I remember how scared I was. All the time.

when you're happy and you know it,...clap your hands

My boss just took me aside to tell me that I was not "friendly" enough to the last person I spoke to. I speak to over 100 people a day at my job. I am friendly damn near all the time to everyone. I am so cheery-sounding, I often astonish myself because I can project a smile through my voice even when I feel like crap. But she happened to be listening when I failed to go out of my way to sound "friendly". Did I ever mention here that I hate my boss? She's a totally anal retentive person who really needs to go out and get drunk or something, but she never does, so she is angst-ridden and nasty and nit-picky much of the time. I call her Dragon Lady when I talk about her to my mother.

Anyway, so that was not the point of this post. I wanted to mention how my depression is. For some time now, I have used this blog to help me notice little nuances with my medications and to put things into my memory about the drug regimen that I am on. So I wanted to mention that I did an experiment on my own, and I stopped taking Inderal. I do not have to take it, since the only reason I take it is to cope with side effects of Risperdal and Seroquel. So my doctor tells me to take it as needed, but I've been in the habit of taking it every day for a long time, mostly out just because it's been part of my medication routine. So I remembered that my doctor had mentioned Inderal (propranolol) can cause depression, and I thought I'd try to see what I felt like without it. I think I feel better.

I have been having moments recently where I feel happy for no apparent reason at all. This is an awesome change for me. I often am so tired and rather depressed, that the happiness only comes in when it's caused by something that occurs or something I do. But lately I've just had it come out of the clear, blue sky. I marvel at these times, because I am not used to them. I feel very grateful that I am not having auditory hallucinations all day long right now. I am aware that they could come back any time, but I am appreciating the time I have without them a great deal. I think this leaves me with extra energy and with the capacity to be happy, because I'm not all caught up with delusions or worrying about what people are saying all around me everywhere I go, all day long. The freedom to not have to interpret everything you hear all day is amazing. I love it.

the social security saga is resolved, sort of

I do not ordinarily write two posts in one day here, but this one is an entirely separate topic from the other and they wouldn't go well together. So, my Social Security saga (if anyone actually reads this blog enough to know what I am talking about), has finally been somewhat resolved. Well, somewhat, but not completely. I received a letter stating that the money I owed from when I was supposedly paid money I supposedly should not have gotten was going to be taken directly out of my check, every month for the next five months, until it was repaid. Which would mean I get no check for five months. That would mean homelessness, since I'd be unable to pay my rent, and I'm not moving in with my mom again in this lifetime.

So that was a frightening letter. It was followed by four frightening conversations with different employees of the Social Security Administration. I don't think people who are not disabled mentally or physically have any idea what life is really like for those of us who are, because a lot of people would not put up with this nonsense, and perhaps this nonsense wouldn't go on if more of us protested it. So these conversations basically involved people who did not know how to help me (or feel any desire to actually help anyone) telling me, sorry, but, you get no benefits until you have paid back all that money.

Finally, I got a different response. I was told if I agreed to a payment plan, that would involve me paying back all that money, I would possibly get a check this month, which would mean that I could pay my rent and not become homeless. So, I pretty much had no options. I could agree to pay back this money that I cannot afford to pay back, or I could refuse to do so and end up penniless with nothing to live on. Obviously, I agreed to the payment plan. So every month my check which was a gigantic $740, will now be $67 less. This is a small price to pay to avoid homelessness, I guess. So I'm not complaining.

A woman I recently met through an organization I belong to was interested in hearing that I am on disability benefits. She said, "If that were me, I don't think it would be good to give me all that money people are getting on disability because that would make me want to stay home all day and be lazy and collect all that money."

"All that money", is, um, not enough to survive on in this country. All that money barely covers my rent and gas each month. All that money does not only NOT lead to "laziness", but in fact it requires me to work because without supplementing it with a j-o-b, I could not survive. Also, if I had not worked for a living for many years, I would never receive all that money in the first damned place.

This woman really annoyed me with her ignorant comments, but I'm used to finding people completely ignorant about the way the social services work in the United States. It is not like a bunch of welfare queens are living high on the hog and that's the end of the story. Rather, it is damn near impossible to survive on disability benefits, and it's also damn near impossible to ever get disability benefits. And from what I've recently experienced I also know that it is damn near impossible to keep them once you do get them. Anyone who doesn't understand these facts should try living on the approximately $500 a month the average person on SSI or SSDI receives each month, and then squawk about how wealthy they are.

horrifying words written by, well...me

"and reading my own life with horror, I tremble and curse."

-Pushkin

That's written in one of Anne Sexton's books of poetry. I can't remember which one at the moment. I think it was the book with "Flee on Your Donkey" in it, Live or Die.

Anyway, so I just installed these nifty little search engines to the left of this page. I put in the name of a person who I had written about, in my memory, only one time on this blog. But that was my mistaken memory. Apparently I also wrote here at length about this person back when I was psychotic and not yet diagnosed. (deleted embarrassing information here, sorry)

So to think that, in my worst moments of existence, when I was totally suicidal and paranoid and psychotic, I would say "I love this person", and that years later, when I was healthy, not paranoid, not psychotic, I would still say something of that nature about this person, is really odd.

I was basically delusional about this guy for most of the past twelve years. I would like to say that I never think of him at all now, but that would be a total lie. I am quite sure, however, that he has not thought of me in some time. I have not even heard from him in a year. So, obviously we are not exactly good friends. I always thought of him as the only person I could trust. There are still things that I won't talk about with anybody, that I won't write about on this blog, and that I don't even discuss with my therapist - but which I did speak about with him....at length. Because I trusted this person so much, it was ridiculous.

The funny thing is, I would still probably trust him now, but not because I'm delusional. I just felt understood at some very vulnerable points by no one but this guy. So in my mind, that's kind of etched in stone, that I can trust him. And that I can't trust anybody else much. I have friends now, people I know online and in person, who I can talk to about all sorts of stuff. None of them know certain things that this guy knows. I won't probably ever tell them either. Because people are judgemental and there are things about my life which would lead to a lot of judgements. And I don't really need that so I don't discuss those things with anyone.

The strange thing is that I actually did discuss them - but only with someone who never really gave a damn about me in the first place. That's sad. I think that's also pathetic. I don't know what else to say right now.

Sometimes I horrify myself.

I will probably end up deleting this and numerous other posts where I mentioned this topic, if I find myself bored and interested in spending my time doing something so pointless.

murder of an abortion provider and cleaning my apartment

Ya think I was a little irritable in my last post? I know, I know, I don't usually rant and rave like that. And it's probably not very becoming. But at least it's honest. When one puts her thoughts out there for the world to view, they're not always pretty. But sometimes they have vibrant colors.

Well, last night I found out that yet another abortion provider has been shot dead. While he was at church, handing out church bulletins, some good Christian came up (okay, I don't know if the person was a Christian, but I am guessing he will say he is) and blew the man away. A family lost a father, a son, a husband, all because somebody doesn't like the fact that women have the legal right to choose abortion in this country, and we've had the right to choose since the 1970's which is an awfully long time (30 some years out of a few, um, billion years since the world started - providing you actually believe in evolution).

Wow. Just wow. My own mother's response was to say that the person did a good deed for killing the doctor because the doctor "murdered babies", a fact which she learned from Fox News. My mother's not a hateful, horrible person, but she believes things I don't believe, so we obviously don't agree on certain issues. The funny thing is, before that happened, my mother was at my apartment where we ate dinner and watched a movie and got along quite well. Luckily my mother is not a violent person and would never actually kill someone. But people believe weird things. I don't claim to understand these things, as you can see from my last post. In fact, people often leave me completely baffled and confused.

For example, I have incurred the wrath of one hate-mongering, sexist, homophobic, racist jackass who I have the misfortune of being distantly related to by marriage. He is on Facebook calling me stupid and making fun of me, because, well, the guy is a loser with nothing better to do with his time. I also think he's probably a Nazi, considering some antisemetic comments he's made, and I would not be remotely surprised if he's a card-carrying member of the KKK and some sort of militia group too. The guy makes me sick. His opinion of me, negative as it is, is not something I'm going to get too worried about. I just hope I don't run into him in a dark alley or, at, say CHURCH, when he's carrying a gun. And I am quite sure he owns a lot of guns. He also lives in Texas. Enough said.

Back to me and the purpose of this blog. So, I went through another long phase of messiness lately. It got totally out of control, yet again. I let things pile up, and pile up, and then it had to be dealt with. So for the whole weekend I was cleaning. I cleaned, and cleaned, and cleaned. Now I just have to wash the kitchen floor, do about ten loads of laundry, and all will be looking good. I am glad I cleaned. I am not glad I allowed the place turn into a monumental disaster before I got the nerve to tackle it. But that is a problem of mine that has been there for a very long time. My mother has the problem. My sister has the problem. My brother does not. He's a neat freak, and I have no idea how he turned out that way. But the problem with messiness is something I know many other people with mental illnesses experience too. I think some day the particular brain glitch that causes this will be discovered, and, viola, a medication that costs tons of money will be developed to fix it. I hope I'm still alive when that happens.

So, the world is a mess. But my apartment is clean. And for this I am grateful - to myself! Grateful to my self for cleaning it. Who else deserves credit for that? I think it's perfectly okay to be grateful to one's self. I think people should try that more often. I think I will. And I hope I will not let my apartment get horribly messy again.

I should also mention something about my health issues. I am now on two thyroid medications, because I have been to see an endocrinologist about my hypothyroidism. I am also on an appetite suppressant (prescription) that I got from him. I am going to get an endoscopy with a biopsy to check for sure as to whether or not I have Celiac Disease, next week. I am also going to physical therapy again, once or twice a week, and having been doing so for a month or so. I am trying to get into better shape, deal with my chronic back and shoulder pain, and lose weight. This is a lofty goal, perhaps, but I am set on definitely losing this weight and I know that I can do it. I'll let you know when I start making progress.

I also want to mention here that I recently read an excellent book which I would recommend anyone interested in the abortion debate read. It's called This Common Secret by Dr. Susan Wicklund. In this well-written autobiography, Dr. Wicklund, an abortion provider in the midwest, describes what her career has been like. She talks about the people - the antis, she calls them - who threaten her with their antichoice zeal, post "Wanted for Murder" signs with her face on them all over her hometown., how they followed her little girl to school and harassed her, how they stood outside her house screaming and shouting - many times, how they followed her everywhere she went, and harassed her everywhere. She talks of how she had to wear a bullet proof vest to work, and how she had to hire a bodyguard to go with her everywhere she goes.

Dr. Wicklund's career is yet another example of what some people will do to protect a woman's right to choose what happens in her own reproductive organs. Dr. Wicklund is my hero, and I am glad she has not been murdered like so many of her colleagues. Hopefully, she will live a long life, however, the fact that she has to be constantly harassed by fanatics says a lot about the state of misogyny in our society.