Monday, March 30, 2009

cleaning house: getting free from messiness

I appreciate the comments people left about my last post. I know that weight gain is an issue which other people who take antipsychotic medications struggle with as well. I am not sure that there is a good solution available for this problem, unfortunately. I have tried losing weight numerous times with diets and exercise, and it doesn't seem to work well for me now as it used to when I was younger and not on medications like these.

Although I do feel depressed about my weight issue, and the persistent symptoms that come up, I am doing better on some fronts. I went through another phase of keeping a messy apartment the past couple of months, and I finally pulled myself out of that so that I am keeping it more neat and clean now. I feel much less depressed when I am at home in a clean house than when I am going into and out of a messy disaster area. Also, my landlord agency sent people to do an inspection of all the apartments in our building. This motivated me to clean for five days until the place was in good shape again, in time for the inspectors to visit. It also allowed me to have the place clean enough for other visitors, so my mom came by one night and my friend came over another night. Often, in the past, my place was too messy for company. My goal with my apartment now is to manage it so that it does not become that disorganized and embarrassing again.

In conversations with other people who have mental illnesses, I have learned that I am not alone with the problem of being very disorganized, and with getting overwhelmed regarding cleaning house. My mother does not keep up with cleaning at all, and she and I are similar in this vein. She tends to let things go until they are in really bad shape, and I am afraid that I have the same tendency sometimes. I have one online friend with a similar problem, and have met other people in support groups who had trouble with hoarding garbage and junk, not being able to straighten out their homes alone. I wonder sometimes what particular brain glitch this is - the glitch that causes people to live in material chaos. I wish there was a simple pill for it, or an easy solution, but the only answer I've ever found is to force myself to clean even when doing so goes against my constitution.

I would be interested in hearing your comments on this issue. It is something I have discussed here before, and I would be interested in hearing more responses about it. If you or someone you know has a mental illness and some trouble with neatness and cleanliness, please chime in. I think it is an interesting subject to discuss and one that does not often come out into the daylight, because so many people are ashamed of the way that they live behind closed doors.

If you are living in a disaster area, please know that you are not alone in your messy state, and - hard though it may be to believe this - there is a way out. I find that cleaning a tiny bit at a time, and taking frequent breaks helps me get through big messes. I am talking about really bad messes. You may not be able to clean your home in a day - no matter how small your home is. You may need a week. You may need a few weeks or a month. But you can do it. Little by little, like the Little Engine That Could. Just say to yourself, "I think I can; I think I can."

Playing music loudly while you clean can also help you keep moving. I play music every time, and I even have certain playlists set aside for cleaning. It's just like exercising - music helps!

Make sure you have the proper tools first. You may need gloves (I do when my messes are bad), cleaning supplies, sponges, etc....And you also may need help, as in the form of another person. I know how it is to have a place that looks too bad for another person to be allowed to enter - so that is an issue some of you may have come across. But do what you can on your own, and then, see if you have a close friend or family member who would be willing to lend a hand. I know a support group leader in NAMI who does this for people in the group when they ask her, and she says she actually enjoys cleaning, believe it or not!

Also, there are websites to help us messy people of the world. This is one my mom has told me about in the past: Messies Anonymous is a site especially for those of us who are challenged in the area of organization and cleanliness. Her methods are unique, and may be useful to you. This other site has cleaning tips for efficient neatness. Life Organizers has some organization tips as well.

Thursday, March 26, 2009

Medications: are they really worth it for me?

I am sick of getting injections every two weeks. It is, literally and figuratively, a royal pain in the ass. The nurse at the community mental health center I go to does not have any appointments open except in the afternoons when I am always at work. So, normally, I go in there in the morning, ask them to fit me in, and he eventually gets to me so I can get the shot. He's nice about fitting me in, but today, when I went there for the shot and I had no time to wait because I had to get to work, they told me, "it's going to be a really long wait". So, I had to leave sans shot. I can't afford to lose my job just so I can get an injection.

So now, tomorrow, I have to go to the community mental health center for the fourth time this week, so that I can see my ARNP (nurse practitioner who prescribes my meds) and hopefully get the shot while I'm there. There is no guarantee the nurse will have time to do the shot. Only the nurse, Carlos, does the injections, and he is often pretty busy. So I might end up not getting the shot at all this week. Which poses a problem for me, as, supposedly, the shot helps. In reality, I am not sure it is helping much at all in the first place, so I am not really concerned about missing a dose of it right now.

The shots are inconvenient, and, more to the point, they don't really do much for me. I still hear voices. I still have delusions. I still do a lot of things "healthy" people never do with their minds, and the shots have made only a smidgen of a difference in that problem. No one knows why medications don't work wonderfully for me like they do with some people. I take the following right now, every day: Wellbutrin, Folic Acid, Salagen, Anafranil, Seroquel, Risperdone, Klonopin, Inderal, Fish Oil, Naproxen, and a muscle relaxer whose name I can't remember. And Nasonex spray in my nose. So that's about 12 substances I'm ingesting on a daily basis EVEN THOUGH I still hear voices, I still have delusional thoughts, and I don't think these substances are working well.

Granted, they do help TO AN EXTENT for me. They make me far less delusional than I am without them. They make me hear far fewer voices, than I hear without them. They make me sleep at night, which is a gift worth a billion dollars and a thing that doesn't happen for me without a lot of nightly medications. They help with anxiety, and with depression, I think, though I can't be sure that I even really have a problem with anxiety or with depression anymore in the first place since I've been on daily meds for so many years it's hard to tell.

So there are good reasons for not stopping the shots or for not going off my other medications. But when I look at my body, I have 100 reasons that are very evident as to why this medication regimen has harmed me. 100 lbs gained in three years for someone who lived half her life with anorexia is a real issue. That is not a small matter. That is not a minuscule problem. That is a big, hairy, ugly, ferocious nightmare of a problem, and it is not going away.

I have had the discussion with people many times regarding their weight gain and mine, and everyone, including me, usually says if it comes down to being fat and sane versus being thin and insane, I'd rather be fat. I have made that choice every day for years. The "I'd rather be fat and sane" choice. Trouble is, I'm not always all that sane even though I am very fat now. And that is what is irking me at the moment, making me so angry I want to kick and scream and break things. How did I ever let myself get like this?? How can I have put food in my mouth AT ALL after gaining all this weight?? How did I manage to lose total control over my physical being?? And WHY, WHY, WHY can nobody invent a goddamn antipsychotic drug that will work for people like me and NOT cause obesity??? Why??? No, really, WHY??? Why, why, why, why, why???

I do not know why. Nobody seems to know. And yes, I am aware there are a couple of them, like Geodon ( which gave me horrible EPS symptoms that landed me in an emergency room) and Abilify (which made me vomit every day for a month), that do not typically cause weight gain. BUT WHY have all the other antipsychotics I have ever taken caused me to gain all this horrible, disgusting weight???

Every day I look at myself and I try not to despise my body. Every time I hear a family member or someone else mention my weight gain, I cringe. Most people don't mention it, but they do look at it, and they look with disdain. People who don't know me seem to think I'm just some fat slob who eats too much. I am sure they assume I've always been fat, but nothing could be further from the truth than that. I don't think my doctor (ARNP) even realizes how HORRIBLE I look now compared to the way I used to look, back before she met me. I think she fails completely to grasp the seriousness of this situation. I think she assumes, like all psychiatrists I've met seem to assume, that if you're sane, no need to worry too much about the collateral damage from the medications. I disagree.

I don't mean to sound like medications are all bad or they are not worth taking. Obviously, I take them every day of my life and I will continue to do so despite the problems this has caused and despite the fact that they don't work as well as they are supposed to for me. Some people are really lucky. Some people take a medication and it basically cures them of all symptoms. Some people only take one antipychotic, and it works, and they never have to switch to a different one. Some people don't even gain weight. But I'm not one of those people. That has not been my experience. And I feel it is important, especially in this blog, to tell the truth about my experiences, and not sugar coat them in order to sound more happy and positive all the time. Not everything in life is happy and positive. Some things are, some are not. To the extent that the meds work for me, I love the meds, and they are worth taking. To the extent that they do not work, I am frustrated and annoyed sometimes.

Monday, March 23, 2009

Why do I attract this type of person?

My old neighbor, who I'll just call "P" called the other night, and left a long, drawn-out, miserable message full of crying and complaining on my voicemail. I called her back after I listened to the message the next day. "I'm so sick", she said, which is, really, what she always says. She has numerous health problems. The thing is, I have numerous health problems too. It just never occurs to me that maybe I should whine about them endlessly to someone who has no reason to really give a damn about the situation. But "P" apparently thinks it's helpful to talk to me. So she does. And she only talks to me - like several other people I've known in my life - when things are going really badly for her and she has no one else left to call to complain to about things. What "P" and these other people share in common is drug addiction or, at least, APPARENT drug addiction, and mental illness, and needy personalities. I don't mean this as an insult to them, but I'm just stating the facts. And when I say mental illness, I am not referring to everybody I know who has a mental illness. Just about three people I know. And that is not a lot of people compared to the total number of persons with a mental illness who I know.

The thing about "P" is that she has Hepatitis C, and I imagine some things more serious than that, a breast cyst problem, Bipolar Disorder (which I suspect is actually something worse than that), and some personality issues. She takes up with abusive men, user men, ugly men, broke men, and scheming lying men, all the time. She used to have a new one over her place on a regular enough basis that all the other neighbors figured she was prostituting. They were probably right. Now, she doesn't live in my building anymore, but she is miserable at the place where she does live, and she hates it there. Which is why she's calling me. "P", like I think I indicated before, only calls me when she needs/wants something. So she calls me because she has several favors to ask me for and an hour of phone-call-complaining to do to somebody, who, stupidly, will listen (that would be me).

"P" has taken up with yet another in her endless, endless string of asshole men. He has convinced her that he is going to give her enough money to buy a house and he, supposedly, wants nothing in return. P thinks she's just lucky like that. I disagree, but listen anyway. P says that now, finally, she will be able to get her treatment for the Hepatitis C she's had for years, treatment which has been put off numerous times over the past couple of years because she did not have a stable living situation or suitable help. She thinks she has that now, since The Man who is just a natured-Samaritan according to P, and more likely a john or a pimp in reality, is going to help her buy a house. So she's been out looking for houses. Trouble is, P's delusional. She keeps hearing people (her neighbors, she thinks) walk on her roof. She says they've all ganged up on her for the past year that she's been living in her place and they won't leave her alone. She says nobody believes her, including her doctor who told P that nobody was really on the roof. I decide not to share with her the fact that I believe her doctor is right and P is delusional. I listen, instead. That is the kind thing to do, I think. I know that there is no way to talk her out of a delusion which she perceives to be reality. I know because I've been delusional enough myself many times. I tell her that maybe she should get out of her house more often. Then she wouldn't hear the people walking on the roof. I can't think of anything very useful to say, but P doesn't care, since, really, all she wants to do is talk - not listen to me respond.

P tells me again about how hard life is for her, how hard it's always been, as if she hadn't already told me this before on numerous occasions. She feels very sorry for herself, and this is always what annoys me when I talk to her, but, for whatever reason, I feel somehow obligated to let her complain to me. I have my own problems (and I'm pretty sure you do too), which is a fact that P finds hard to grasp, apparently, and I don't really have endless time to spend like this - listening to somebody whine. But I feel that I would be hurtful to say I just did not have the time. Eventually I do hang up, because I'm exhausted, my meds have kicked in, and I need to go to bed. P promises to keep in touch, as if I am going to be bothered if she doesn't.

I feel I'm not my most sincere, true self during these interactions. But I listen to people like P, when I do, for a reason. I feel obligated, and I feel sorry for them. P reminds me of many women I've known in my life who have horribly low self-esteem and who tend to take up with abusive men. Or just mean men. Or just the wrong men. Men, in general, are a real problem for P, and I am basing this on everything I know about her and the men she takes up with. The former boyfriend of P was also a former neighbor of mine, a drug dealer, a liar, a scheming con artist, and an overall disgusting human being. I detest this guy, and I basically told him, at one point to "stay the f--- away from my apartment", after he had sold drugs to my boyfriend (who was a drug addict, and, again a "P" type person himself, only the male version of it).

So, I put an ad up on Craig's List for P, to sell her washer and dryer and get her some money. She doesn't have internet access, and I do, so I don't mind doing this for her. I tell her we'll get together sometime, though we probably won't. She doesn't have a car, and I don't have a lot of patience for dealing with her more than I have to (which would make one wonder, rightfully, why I stayed on the phone with her for an hour), so I probably won't end up doing that, but I might if I start to feel guilty about it. P is the kind of person she is, and I am not going to change that. I know that she'll never care much about what's going on in my life. I know she'll forget to ask about that. I know she'll be completely self-absorbed, even self-obsessed, to the point that she disgusts me. And I know I'll still pick up the phone once in a while when she calls.

The reason I'm writing this post is that I question why, exactly, I come across so many
P-type people. I had a good friend, and her name was K. S. She has a drug addiction problem, and after a few years of knowing her and her schemes of lying and stealing and cheating and drugging, I got tired of being her friend and being asked for money and favors like bringing cigarettes to her in rehab when she never did me any favors in all the time I knew her, so I just cut her off. I just stopped talking to her. She is a sick person - physically, mentally, and addiction-wise, and I just don't have the energy to deal with her anymore. I simply do not answer the phone when she calls. I never call her. I never explained why I was going to cut her out of my life. I just did it. I just felt that I had to, for my own survival and sanity. I was sick of her using me, and sick of her manipulative ways. I was sick of how self-absorbed she is. And sick of being asked for favors.

The only problem with this situation is that I feel guilty about it all the time. I don't know why I feel guilty. I've had plenty of people walk right out of my life in the past. Most of the time, they told me point-blank that they wanted nothing to do with me anymore (two close friends did this, a few years back when I was psychotic and my boyfriend walked out a little over a year ago), and sometimes they said nothing (a few acquaintance/friends did that), and I just never heard from them again. I know exactly how crappy it feels to hear a friend say they just don't want you in their life anymore because you have too many problems, and because I know how that feels, I can't bring myself to say those words to K.S. or to P or to anybody else. It is much easier for me to not pick up the phone and leave K.S. to figure it out on her own, however unfair and immature this may be.

In the end, the question I have for the universe is, why do I end up with so many P-type people wanting to be around me? Why did I fall in love with a drug addict, P-type person? Why did I end up friends with KS? Why does P still contact me? I have no real idea of what the answer is. My mom says it means I need to go to Al-Anon, but I disagree. I don't think my parents' alcoholism problems affect me anymore. I don't think that the fact my family has a legacy of drunkenness really rules my life. Maybe we all come across P-type people. Maybe I'm just too nice to them. Maybe it's because my self-esteem is low. I don't know. What do you think? I'd be interested to hear your feedback, as usual.

Added: To explain why I cut K.S. out of my life in a way that may sound cold-hearted to you, let me tell you what KS said to me on the phone, when I called her one night, months before I cut her out of my life, and told her I was thinking a lot about suicide and hearing voices (things she also does herself on ocassion). "I'm busy," she said, "I'm playing a game of cards. I'll have to talk to you later." And she never called me back. Remembering this makes me feel less guilty about cutting her out of my life, because, this was, in fact, the way she always was - cold-hearted, mean, self-absorbed, selfish, and not a good friend at all.

Wednesday, March 18, 2009

paranoia and the Social Security saga

The Social Security Administration sent me a letter that makes no sense. In it, they informed me that I was not disabled for certain months in 2006 and 2007, because I worked part time and, according to them, made too much money for me to have been disabled. Now, however, they do consider me to be disabled, not because I work less (I don't), but because I make less money per hour. They informed me, in this letter, that I was to repay them $3,200 by April 10th, and they included a nice little payment stub where you can give them a credit card number to pay this amount. I do not have a credit card. I also do not know anybody who is disabled yet has $3,000 laying around somewhere.

I make $8.43 per hour at my current job. I cannot pay my rent, car insurance, electricity, and cable bills without my disability check. Yet the Administration has stated in this letter that they plan to take the $3,200 right out of my check, unless I send them the money myself by April 10th. Of course, I am going to appeal this nonsense. I have an appointment with a legal aid program person next week, and I hope that they can help me. But in the meantime, the stress of this situation has sent me head-long into more psychotic symptoms which, technically speaking, I shouldn't be having since I am getting injections and taking all the other meds I'm on religiously.

Last night I was sure my therapist and the other woman in my two-person therapy group were controlling my mind and reading my thoughts and sending me hand signals that are part of government mind-control again. I frequently have this feeling in the group (*and also, in any other group I go to, such as in hospitals), but normally I don't believe it as strongly as I did last night. I am even afraid to write about this here right now, because a part of me still believes it is really happening. I told my therapist, and the other group member, that I was afraid they worked for the government, etc., and they told me that of course they don't. My therapist always makes a joke about how she would never be an employee of the Republican party, but that won't work now that the Republicans are not in charge of things. My therapist said that my paranoid thoughts were happening more last night than she expected them to be happening, but once I explained the Social Security nightmare, and how I associate the Social Security Administration with the Nazi SS military in my mind, she understood. She said what I am going through would make me feel persecuted and it was understandable that this would bring back the old thoughts of the Nazis controlling the world, etc. I don't believe that is happening right now, but I did believe it with most of my being last night. I could barely speak when I was sitting in the therapist's office, and I whispered the part about how they were working for the government.

I think some people assume that you cannot have such symptoms and know you have them. And I know some people who know me and assume I have no such symptoms anymore, ever. Some people think that if you're being treated with medication, all these symptoms go away, but that has not been the case for me. I have had a lot of times where the medications were not as effective as they supposedly should be, and now is one of those times. I know when it happens too. It happens when I am more stressed, more tired, more hungry, or all of the above - and my brain just doesn't work well under those conditions. I worked nine hours on Monday. I worked six hours on Tuesday. By Tuesday afternoon, I was hearing voices and thinking callers at my job were government agents. By Tuesday night, I was having a lot of delusional, paranoid thoughts (according to what someone who is not actually experiencing them would call delusional and paranoid).

This is why I can't do things like walk around Disney World, go to the beach all day, shop a lot at malls, or anything else that wears me out, and also why I take naps sometimes, and eat three or four times a day.

Monday, March 16, 2009

Starry, starry night

The other day I went to see an excellent film, "My Brush with Genius" about Vincent Van Gogh, at the Imax theater in Tampa, at the Museum of Science and Industry (MOSI), that is located there. It was an excellent film, and I am a huge fan of Van Gogh, so I wanted to share a video with you of a song about him, "Vincent" by Don Mclean, with some of his paintings. Van Gogh committed suicide when he was 37 years old (three years older than I am now), and he only sold one painting while he was alive. Today his paintings are worth more than $85 million a piece. I have Van Gogh replicas all over my apartment.

Thursday, March 12, 2009

exploring different doctors, etc....

Yesterday I went to a local university's psychiatry clinic to see about going there for treatment. I was a little disappointed that I had to see a resident, rather than a more experienced doctor, because that is the way the clinic works, but I was interested in hearing her opinion of my symptoms and her recommendations for my medication situation. (Wow, that almost sounds poetic rather than extremely boring!). So I gave her a long history of my mental health issues, starting at age 15, which was when I was first depressed enough to attempt suicide. I don't really, in my mind, correlate being depressed at 15 with being psychotic in my twenties. I am not particularly sure that the two things are related at all, but doctors always seem to think they are.

By the time I finished this history, I realized I was talking in such a matter-of-fact way about being delusional, that there was no way this resident was going to understand that I *still am* often delusional and psychotic to some degree. I think that she gathered, from what I told her, that my worse symptoms were all mostly gone now. While it may be true that the worst ones are gone, the other ones are still a real bother, and I felt that maybe I failed to outline the severity of my current situation, because generally when you say, "I hear voices" doctors tend to think that you can't be talking about real psychosis because people who are clearly psychotic generally don't know that they are.

I think this is an important point that I'd like to explore with a little research. I feel that I almost have my experiences discounted sometimes, because I am actually aware of what I am experiencing while it happens. My regular psychiatric nurse practitioner who prescribes my medication has told me in the past that if you are aware you're "psychotic" then you're really "not psychotic". There is some other term she used for people who are aware of these symptoms, but I forget what it was.

Anyway, the university resident was kind and seemed interested in what I was telling her. She said that she is not sure why I am on the medication regimen I am on now (although I tried to explain how I ended up on the things I am on now). She said, also, however, that she wouldn't want to change my medication right away because, "this seems to be working for you." Clearly, something was lost in the translation, since what I have been repeatedly told by my therapist who I see every week is that my medication is obviously NOT working too well, since I am hearing auditory hallucinations every day of my life.

The resident explained that she would like to review some of my medical records from the clinic I go to regularly for my medication and therapy. Then she went and got her supervisor - a more experienced doctor - so that person could meet with me briefly. They basically stated that it would be hard for me to get treatment at their clinic because I would have to actually see a doctor there every two weeks to get my Risperdal injections. This would be inconvenient, since their clinic is an hour or more away from where I live, and I have a job. Also the resident then told me her schedule - and that she is only available a few hours on three days out of the week, so it is hard to get appointments with her.

So then we discussed another option, which was what I had gone in thinking anyway, and that was the idea that these doctors could consult with my ARNP at the clinic I go to, and offer some suggestions. The resident said she would like to have some bloodwork done, and receive some records which she would review, and then see me again in a month so we can discuss things. So I agreed with that. I was rather disappointed that I had not managed to secure a new doctor, but at the same time, what they explained about the requirements of me switching to their clinic made me think that this was not a good idea in the first place. For example, they have no therapists, and I do not know if I could continue to see my therapist at the mental health center if I went to a doctor elsewhere. I like my therapist, and I would not want to have to give her up. Also, they have no social workers, and the community mental health center might not let me continue to receive case management with my current caseworker who I have been with for a few years if I switched doctors.

Ideally, I would rather not see a resident or an ARNP. My goal at this point is to see an actual doctor. However rude or elitist that might sound, I think I have a right to see a full-fledged doctor with experience treating my illness, and that is what I want now. So, I may end up having to give up my case manager and possibly my therapist, at some point, in order to go elsewhere for a doctor. I am not sure that another doctor would have any great, miraculous solutions, but I do think many other doctors would take my 100 lb. weight gain from medication a lot more seriously than the person I am currently seeing does. She doesn't seem to think it even matters, or to understand that I need some real help in controlling the weight - as in an appetite suppressant or something of that nature. She said she cannot prescribe something like that, and I have no patience left to be told that saving myself from being morbidly obese is not within the realms of possibilities because I am going to a community mental health center and they just can't deal with that there. It's something I HAVE to deal with, and I am not going to keep ingesting medications and being injected with medications that make me fatter and fatter and fatter. It's out of control at this point, and I need to be taken seriously on this issue.

It bothers me sometimes that if I had any other purely physical illness, the fact that a medication made me gain this amount of weight would undoubtedly lead any reasonable person to either take me off the medication immediately, or to figure out a way to prevent any more weight gain from happening. It has been my experience with community mental health centers and hospitals, however, that no doctors really seem to care at all if your psychotropic medication makes you obese, because all that is supposed to matter is that the medication works, or does not work. I don't think this kind of discrepancy is right or fair, and I think it is related to the stigma that still exists which keeps mental illnesses relegated to some "other" category of illnesses that aren't the same as a physical illness that does not involve the brain.

So those are my thoughts on that...Now, I suppose it will partly be up to me, and largely be up to the rules of the community mental health center as to whether or not I get a new doctor somewhere else. I do not feel that it would be wise for me to lose my case manager and my therapist right now, and I also do not think it is fair for the agency to tell me I have to continue to see their ARNP and not go elsewhere for a doctor if I want to keep these other services going.

In other news, I am awaiting word from the Social Security Administration regarding my appeal of their threat to take away my disability benefits. So we shall see what happens there. Please wish me luck!

Thank you to all who continue to leave comments here; your support and good wishes are very meaningful to me, and I appreciate them all. We seem to have grown a community of mental health advocates on Blogger, and I am thrilled to be a part of that.

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.