Friday, October 29, 2010

To Be Heard: one of the best nights of my entire life, and an incredible honor (Consumer of the Year Award)

When you are held captive by a mental illness, you go through a lot of isolation. You have some really horrific experiences, and you have them all alone, all the time. Nobody can see what goes on inside your mind, what haunts you, what drives you to harm yourself or keeps you up all night. Nobody knows the self-hatred, the terror, the traumatic experiences, the delusional hell, the voices, the things you see that others can't. Nobody usually says, "Hey, it's going to get better", because when you have a serious mental illness, it's very difficult to verbalize your experiences, even if you do have someone who would care enough to listen to you do so, and when you are psychotic, as a rule you do not know that you are psychotic in the first place.

Five years ago one night, I sat on the bathroom floor of the tiny mother-in-law apartment (attached to a house) I lived in, with a Bible, a bottle of vodka (even though I don't drink, normally), and a loaded .357 magnum in my hand. I looked at the gun, placed it inside my mouth, and came very close to pulling the trigger. But I didn't pull the trigger. That decision led to the following day, when I was taken by police to the hospital for the hospital trip that would finally lead me into the realm of recovery.

So tonight, when in front of a couple of hundred people, the executive director and the president of our NAMI (National Alliance on Mental Illness) chapter gave me the Consumer of the Year Award, and said things like, "Jennifer changes people's lives when she tells her story," before she gave me so many more compliments on being a survivor of what I lived through, but more importantly on the work I've tried to do to create awareness, advocate and teach people about mental illness.......well, that experience really meant a lot to me.

My mom was there. The same mom who came to visit me in several hospitals at different times; who showed up to see me even after I had destroyed her car in one of my suicide attempts and she had no car and had to ride the bus; who tried to get help for me when she didn't know what to do or what was really the problem, that mom was there. And so I said to the audience, "I did not get to where I am now by myself. My mom is here, and she was there for me, and my wonderful case manager and my excellent therapist have helped me, and the people of NAMI have become like a family to me." I meant that.

Not only was I so honored to see in the program some lovely, kind words written about what I've done as a member of NAMI, but one by one, people in the organization came up and told my mother how I did a great job as a speaker and that people who heard me speak were amazed, and that some had tears in their eyes. My mom hasn't heard me speak and I don't tell her everything I do with NAMI, so it was neat for her to hear about that, and it was really very flattering. I felt incredibly honored.

The president of NAMI Pinellas told me, "This is a huge honor and you completely deserve it." I was so grateful for this recognition, and for the fact that one of my peers in the consumer council was the person who had nominated me for the award, and that the board had voted and decided to give me this award. I can only compare this night to what it must be like to have a wedding. There was this huge outpouring of kindness, there was absolutely delicious food, and there was dancing. I even danced! If you knew me you would know I don't dance, but my mother talked me into it.

My family has so many problems that everyone kind of has to look out for her/him self, and we can't always be there for each other. So it was important to me to recognize the fact that my mom has made a lot of efforts to be there for me, when she could, even though she had her own constraints. Nobody else was there when I was locked up for months in the hospital, and it was important for me to bring her with me to this event tonight so that she could see that I've come through, in a way, to the other side - at least to some extent.

NAMI is a truly wonderful organization. Other people who received the awards tonight are great advocates, and one is a police officer who has saved people's lives when they were suicidal because she has gone through the Crisis Intervention Team training of which I'm proud to be a part, and that training happens because of advocates I know in NAMI who have been tireless in their efforts for many years. 1,000 police officers in this county have been educated on mental illness through our C.I.T. training, and 10,000 throughout the state of Florida have as well. The people who make that happen do it as volunteers, do it without being asked, do it because they know how important it is, and do it without asking for any recognition at all. For them to honor me, when I am in awe of them myself was an amazing experience. NAMI has changed my life in the past few years.

I first went to a "Consumer Connections" support group looking for a place where I might belong. I then went through Peer to Peer training and attended a number of the education meetings, before I ended up involved in the Consumer Council. This year we revamped that council, and I'm the secretary of it. We meet twice a month. We created a brochure, and we created resource packets to give to local hospitals, and we are only a small group of people. As Margaret Mead said, "Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed it is the only thing that ever has." Truer words have never been spoken.

To be heard, especially when you've been a part of a cast-off group of people, stigmatized, deserted and ignored by society, is an empowering experience. To be heard when you're saying words that are vitally important to you because of the experiences of yourself as well as the experiences of countless other people who you want to speak up for, well, that is very empowering.

Tonight it was reiterated over and over that I've been heard. I will continue to use my voice whenever possible to raise awareness about mental illness, to tell my story when it might make a difference, and to shine a light in the darkness in which I once lived, where many people still exist. I would not have become able to do this as a public speaker without the encouragement of NAMI's members, and I appreciate them all a great deal. The person who sat on that bathroom floor five years ago is eternally grateful to be alive, and to not be living in isolation anymore.

Tuesday, October 26, 2010

a good day, sunshine

I had a great day today. It started at 6:30 because this morning I was scheduled to speak at the Southeast Institute on Homelessness and Supportive Housing at a hotel on Clearwater Beach. I am happy to say that this speech went pretty well, despite my nerves and the fact that I did not read the speech I brought with me to read, because talking to the people directly seemed to be a better idea. I did forget some things that I wanted to mention. I also focused more on my story of my own history than I did on what I do as an advocate, which may or may not have been the best way to go, but there was limited time. I have come to realize I can talk for long periods of time! Twenty minutes just zooms right by. It's ironic because I had always hated public speaking before, but I feel like what I am trying to say in these circumstances now is so important, I really need to get the points across, not just because I want to make a point about something that affected me, but rather because I want to make a point about something that affects millions of folks. In this case that was both mental illness and homelessness.

So, I spoke on a panel in a workshop called Peers in Power. My co-panelists were absolutely dynamite. They were Malik Thompson, a veteran and a formerly homeless individual who had a drug addiction problem and has PTSD, but now travels around Florida as a part of Volunteers for America speaking to other veterans who are homeless, and Pauline Clarke-Trotman, the Director of Permanent Housing at Better Way of Miami, Inc. Pauline was also formerly homeless, but now runs this agency for homeless people after moving up in the ranks from first working in their shelter/transitional housing there. We were introduced by Ellen Pekalkiewicz, who is the Program Director for the Florida Supportive Housing Coalition.

After the speeches, several people came up to speak to me, and two of them asked if I could speak in other places, which is exciting. I, and perhaps the NAMI Pinellas Consumer Council, will be looking into doing that. The other members of the consumer council and myself have been wanting to do more public speaking. One person said to me, "You could really write a book", and I said, "I'd like to", which is true.

At the luncheon today, the first keynote speaker was Secretary Sheldon of the Department of Children and Families - a big agency with a lot of money to filter throughout many programs around the state. This is a very influential person, so I was delighted to hear him speak about The Vincent House. Though I was never a member of Vincent House, I have loved the program and the people who run it since I first found out about it five years ago. It's a clubhouse which is a place where people who live with mental illnesses can go to have volunteer jobs that train them for regular paid jobs. It's a place that gives people a home where they feel a sense of belonging, and it was created by two amazing people named Diane and Elliot Steele who have a daughter who lives with a mental illness. Secretary Sheldon spoke positively about getting more funding for Vincent House, and I thought that was great.

After his speech, I tried to get close enough to introduce myself to Mr. Sheldon, but he was rather surrounded by people and hard to get to before he walked into a room with a closed door. So, I spoke to someone from his office and asked him to pass along the message that I said thank-you for what you are doing for Vincent House, because that place has helped a lot of people here where I live. I wanted to talk to the Secretary about Short Term Rehabilitation - a program which no longer exists hardly anywhere in Florida, but which saved my life when it did exist. I want to tell him exactly why we need that program to come back and we need the state to fund it. I think I will be writing him a letter about this. I've already written about it in the past to my legislators but got no real response.

I enjoyed being part of this conference, and I attended a couple of workshops, because I do plan to go into the field of human services in some capacity with the degree I am working on for the future, and because I want to do what I can now to help homeless people with mental illnesses.

After the conference, I went and voted early, which was the second good thing of the day. There was no line, and I knew who I wanted to vote for, mostly, so it was quick and easy. I really urge all of you to exercise your right to vote. Women have only had this right since 1920, and as a woman, I think it would be a crime for me to not vote. I vote for Democrats, not because I agree with everything they do all the time, but because I consider the Democratic party better when it comes to funding programs that help human beings live their lives.

The third good thing that happened today was the Sound of Music sing-a-long at a local movie theater, which I went to with my mom and my sister. We were the only people who sang to almost every song. The lyrics came up on the screen, so it was a lot of fun, and my family is so goofy they made the entire experience really hilarious. I have not laughed so long in quite a while!

Finally, on another positive note, I will mention that on Friday I'm going to a NAMI banquet where I will be receiving the Consumer of the Year award for the NAMI chapter in my county, and that is really an incredible honor and very kind. I was really surprised by this news and grateful for the thoughtful recognition.

“I am only one, but still I am one. I cannot do everything, but still I can do something; And because I cannot do everything I will not refuse to do the something that I can do.”~ Helen Keller

Saturday, October 23, 2010

In the rearview mirror

I remembered the fence. There's a courtyard, with a couple of broken swings, a picnic table. On the opposite end, across the fence is a horse that lives next door. I remembered the day someone escaped over the fence, and we were all corralled quickly inside while staff members frantically chased him down. I remembered trying to play basketball, badly, because I don't know how. I remembered my roommate, Prudence, and some guy and I throwing the ball to each other. Anything to break up the monotony. I was so grateful for those cigarette breaks, because it gave me a chance to get into the fresh air (when I got far enough away from the smokers), and gave us all a change of pace, and glimpse, ever-so-briefly, of freedom.

This is the mental health crisis center here that I'm speaking of. I was there five years ago, and I recall it all so clearly, even now. I was there today doing advocacy work. Actually, I was there twice in the past week. I had the idea sometime back that our NAMI (National Alliance on Mental Illness) consumer council should collect books, games, and puzzles for the people on local psychiatric wards, especially this crisis center. I finally delivered what we had collected last week. I went up to building H, and rang the doorbell. It felt strange to do this. It felt strange to have a staff person open the door and talk to me as if I was a regular person, not a patient. I recalled going through that door to get to the cafeteria with the less-than-tasty food, and there I was, five years later, ringing the doorbell.

Today, I was back there again to deliver resource packets. Earlier this year, I told hte consumer council members I thought we should make up resource packets for patients in hospitals, to give them the phone numbers and addresses of places they might need to go to, and the other members of the council agreed this was a good idea. I spent a lot of time putting the list together, and we now have had 300 packets printed. We are putting the resource lists in folders with a brochure about our consumer council and a brochure about NAMI Pinellas County. We put the first folders together last weekend.

As I drove away today, looking at the fence through my rearview mirror, I thought, I am doing what I can do. I know how it is to be in that place, and to be in psychic terror, and to feel like a prisoner, with no way out. I remember it vividly, just like I remember the other building I was sent to where I spent several months, which no long exists. I remember how little treats, like cakes that a former patient used to bring to us every week, and visits from my mom, and getting to do art projects after I convinced the staff to buy some materials, all of these small creature comforts meant so much in that dark, empty time and space. And I can't visit everybody there, or bring them cake every week, but I can do something. And I am doing the something that I can do. I feel good about the work our consumer council has been accomplishing, and I think we are on the road to really creating change in people's lives. We are trying to get the word out about our group so we can grow from five people to more than five, but in the meantime, we're doing these things that we can do now.

Driving away I thought how funny it is that now I talk about being grateful for the time I spent in that place. I tell people it saved my life. I say I would be dead without it, and I believe that is true. But when I was locked in there five years ago, nobody and nothing could have convinced me I would ever look back on it as a positive experience. I hated being confined. I hated being in a chaotic atmosphere. I was scared of the staff and the medication. I hated not having any freedom. I was bored stiff. I got beaten up by another patient once. I found my way out of boredom by flirting with Jim, who later became my live in boyfriend. I loved every outing we patients got to go on, and I hated the times when we had to do nothing but stay in our rooms. I felt caged like an animal in the zoo.

And yet, it was good for me. It was the best thing available for me at that time. Today, if I was as psychotic and as suicidal as I was when I was sent there five years ago, I might not be so lucky. They don't keep many people for five months anymore. The state government in Florida did not want to fund Short Term Rehabilitation programs anymore, so a couple years ago, they got rid of the one we had in this county, and the got rid of the ones in other counties too. Today, people are falling through the cracks more than they were five years ago, and this makes me angry and sad. That building I was at today still exists, but the one where I spent months in SRT is gone - a lost lifeboat that no one can use.

For the people who are hospitalized, I think our resource packets will be helpful. It lists what help there is available in the community. I think that even if they only help a few people, it's a worthwhile endeavor. I'm glad NAMI has the money to pay for the printing. NAMI is a great organization, and if you have a mental illness, you might want to check out the chapter in your area or start one if one does not exist.

Wednesday, October 20, 2010

Love Your Body Day 2010 -Today! Spread the Word

It's almost midnight, and I had to get myself out of bed after realizing that I had not written a post today for Love Your Body Day 2010. The National Organization for Women, with which I am very involved, began this special day some years ago, and it has spread throughout the country from NOW chapters to college campuses to high schools, as a day to raise awareness about the objectification of women's bodies. In this country where we are bombarded with hundreds of images each day that use women's bodies to sell products because a woman's body is worth money, and where the unachievable cultural expectation for women to be stick thin, polished, without a freckle or a pimple or a wrinkle or a ripple - we have a problem. Young girls, by the millions, start hating their bodies around puberty when they enter into the realm of woman-hood, because in woman-hood, there is misogyny that surrounds you and it is this misogyny that contributes to the diet industry's $40 billion a year profits, and to the hellish nightmare of eating disorders for countless young women.

I almost died of anorexia. But, worse, a part of me did die from anorexia. I gained that part back to an extent, but I'll never get all of it back. A piece of that disorder lives with me still, and I doubt I will fully outgrow it in my lifetime. I certainly try, but I still dislike being overweight a great deal, and this has major effects on my self-esteem.

There was a time when I could tell you how many calories and fat grams I had eaten in the past week, to the exact number. I lived in a world of numbers, where starvation was the goal, and self-hatred was the fuel. I couldn't think clearly about other things, because of all the thoughts of the numbers. I couldn't accept myself as a person with flaws. I had to punish myself, to search for perfection. I would have probably developed some type of mental health problem related to low self esteem even if anorexia didn't exist. But the fact that it does exist, and the reason I got that particular problem, is our culture's obsession with objectifying women.

If you care about this problem, and you want to do something about it, there is much research on the internet. Some is at my very old website, at and an excellent resource is Jean Kilbourne and her documentaries, called, Killing Us Softly, which discuss exactly how advertising destroys women's self esteem and perpetuates misogyny every second of every day. You can also get involved with NOW or another feminist organization and empower yourself while advocating for the empowerment of all women and girls, and equality between the sexes.

Finally I want to say that, if you're reading this and you suffer from an eating disorder, there is hope for you to get your life back. There is recovery and there is a fight that you can battle and win. I, and many other women, have come out of the hellish nightmare of calories and fat grams into a world where we can focus on other, more important things, like actually living our lives. Eating disorders are prisons, but there are keys to the doors. Do not give up. You are stronger than you think you are. Seek help, be honest with yourself and your healthcare providers if you have them, find a support group online or in person. Read books like Wasted, by Marya Hornbacher. Figure out why you hate yourself, and work on beginning to love yourself instead. It's not easy. It was the hardest thing I had ever done. But it is possible, and you can get to the other side. You deserve to live freely.

Monday, October 18, 2010

down in the doldrums right now

I'm used to being exhausted, but it is still annoying when it occurs. I have been depressed and exhausted a bit lately. This weekend, I did nothing but lie around and sleep most of the time. I'm not usually like that. I like to get things done; I'm busy, and usually pretty productive. I am not lazy. But depression and physical exhaustion are both problems I've dealt with a lot in my life. I don't label myself with "chronic fatigue" anymore, because the years when I was living under that label were a nightmarish hell, and also because it was never an accurate diagnosis. But I am very fatigued sometimes. The illnesses I do have are the reason for that.

Another reason is the overwhelming, paralyzing terror I have about having to move soon. I am not prepared. I have packed nothing. The landlord agency has not told anyone in our building when we will be moving yet. But it is supposed to be within the next two months. Maybe one month. We are moving into renovated units in the building. I am not looking forward to this work. I have a lot of stuff. I'm not a hoarder, but I don't throw things in the trash all the time like my mother does. I have a lot of clothes that don't fit, but I keep them for the day when they will fit again. They are piled up in my bedroom in containers. I'm not very organized, as I've mentioned here before.

I am so angry at myself that I accomplished nothing this weekend but grocery shopping. I am so mad at myself every time I do something like this. But at the same time, if you're tired enough to sleep all day, maybe you need to sleep.

Going back to see my old therapist again the other day was wonderful. I had missed her a lot for a long time. She and I have a history that couldn't be replaced with somebody else, so even though it is a big expense for me to pay for therapy out-of-pocket, I'm going to be doing that twice a month. I can't afford to go more often than that. I think it will be helpful. She gives good advice, offers her thoughts on things, reads a lot of research, and gives me articles to read. She recommends books, and she looks for the root cause of things rather than just sitting there giving me no feedback. She is truly helpful.

So, I have hope. I usually do have hope. Even when I'm really depressed, I have hope. I am just so tired lately. I think that I push myself so much during the week, by the time the weekend comes, my body just gives out and refuses to cooperate. But I could have forced myself to do some packing today, and I didn't. I chose to allow myself to be depressed, and sleep. That was a stupid choice. I am not doing that next weekend.

I'm hoping to get off Seroquel soon. I talked to the LPN (nurse) who gives me my Risperdal Consta injections every two weeks about my history with weight gain on the various antipsychotics I've been on, and we figured out that Seroquel seems to be the main culprit. I hate having to take a drug that has caused me to become obese and pre-diabetic. It works for me, though, and that is why I am afraid that going off of it will cause symptoms to return that I can't deal with. So it's a catch 22. I'm not sure what the best thing is, but most likely, I'll talk to my ARNP (nurse practitioner who prescribes meds) and reduce the dosage and see how that goes. I would so love to be able to live without needing so much medication! I would so love to be able to lose weight and not feel like I am starving to death all the time. I would so love to get off Seroquel.

Tuesday, October 12, 2010

Did you really say that, or is it just me?

Little things have happened lately. The people around me talking about a subject that pertains to me, and leading me to believe they're talking about me on purpose. I know people would call that paranoia, but if it happens several times in a week, it's hard not to think it's really happening.

My car needed major repairs the past couple of days, and that has been stressful due to financial reasons. The car broke down on me when I was on the interstate on my way to Orlando for a meeting, and I had to have it towed all the way from Lakeland to Pinellas County, which is about an hour long drive.

The impending move I have to do, because the landlord agency is renovating this apartment building, is hanging over my head like a guillotine, and I dread it more and more, the closer I get to whenever that day will be. I have a lot of stuff, and a lot of cleaning and packing to do. I have no idea how to do it all.

Today, I took a cab to school because of my car being in the shop, and the cab driver happened to talk about how he supposedly worked for the National Security Agency. I was not imagining this, he really said he had worked for the NSA. Immediately, this brought back the thought of maybe-the-government-is-tracking-me and maybe he's playing mind control games with me and trying to speak to me in double-speak and make me respond in double speak or another language, to test how I'm doing as a government operative for the CIA, NSA, etc. Of course, I know how ridiculous that sounds. But it happens anyway sometimes.

The reason this happened in the cab is that it has always happened to me in cabs. When I lived in Alexandria, VA, and was floridly psychotic and not getting any treatment, I frequently rode in cabs as I had no car, and the cab drivers would, in my mind, be trying to get coded information from me using special mental techniques, as part of "handling" me. I then had the same exact experience after I moved back to Florida in 2005, and took cabs for a while to a day treatment program. All the cab drivers were working for the government and testing me to see if I spilled any secret information, or what secret mission I was on. This is how my brain worked. So, back in a cab again now, it happened again now. That's not very comforting. Each time I have such an experience, I am overcome by the fear that my life is going to take a rapid decline back into psychotic hell, and it terrifies me.

I decided I really need to see my old therapist again. She was my lifeline for three years, and I haven't really had anyone to talk to who understands me, since I had to stop seeing her due to insurance reasons. So I'm going to be paying out of pocket to see her every couple weeks, and though this is very expensive, I feel that it will help me to function better which will eventually lead to making more money and therefore justify the expense. My other therapist, the new one, just is not the right match for me, and I miss my old therapist so much, I finally realized I had to find a way to go back to her. She is the type that reads research and the latest psychology books, and listens intently, and gives good advice, and has many years of experience. I think it will be helpful to start seeing her again.

I'm hoping that these symptoms I've been having lately will go away, because I really want to get off the Seroquel, finally, in order to lose weight which I desperately need to lose to avoid getting diabetes and to stop being obese. But if the symptoms are coming back, it wouldn't make sense to go off the Seroquel at that time. I will have to see what happens in the coming weeks.

College: achieving a life-long goal

Today I applied for a scholarship at my school. One of the essay questions asked if you have faced any obstacles that got in the way of your education. Boy, did I have an answer for that. I started college the first time when I was 19 years old and battling anorexia (and losing the battle). My mind was so obsessed with the numbers: calories, fat grams, pounds, that I literally couldn't think clearly about anything else. I dropped out of all my classes.

A couple of years later I went back, and while doing well as far as grades go, I was not doing well physically or mentally. I was seriously depressed and in great physical pain. The exhaustion that overcame me was so extreme, it was difficult to get dressed and leave the house. I was diagnosed with Fibromyalgia and Chronic Fatigue Syndrome then. The diagnoses later changed, as regular readers here already know.

Fast forward to age 24: I was doing great at a community college in Baltimore, in an honors program. I got a huge scholarship to attend Smith College through the Ada Comstock Scholars program at that school, which allows students above the traditional, high-school age to attend an elite institution. I could not have been more excited. My brain and my body did not cooperate. Instead of Smith, I ended up in a homeless shelter carting around my famous box full of pills. That was the year I became delusional.

Fast forward again. At age 32 I returned to school, determined to finally get through it this time. Now I am 35, and after all these years, I will be getting my A.A. degree in December, and starting a bachelor's program in January, as I've mentioned here before.

Obstacles galore? Yes. But I do think that if you want something badly enough, and are willing to put in the effort to get it, you can get it. I still have symptoms. I still deal with those illnesses I mentioned. I am constantly trying to manage stress. But it was possible to get through numerous classes while experiencing symptoms. I realize I'm lucky. Not everyone with Schizoaffective Disorder or Schizophrenia has that luck, and my luck could run out at any time. But I am doing my best to get through school, and I am glad to be making some progress.

It's hard sometimes. I look back and think, "if only...." I wanted a degree from an excellent school. I was smart enough to get one, if things had worked out differently. If only I was not 35 and just getting started on the bachelor's. If only I didn't have these illnesses. If only I had more money, more friends, and more achievements under my belt. But what good does it do to second guess yourself? It accomplishes nothing much. I am where I am because of the cards I was dealt and the choices that I made in life - just like everyone else. If I didn't have a mental illness, I would have had something else to deal with.

All around me are problems. My car is in the shop and the bill for the repairs is extremely high. Several members of my family have serious financial problems, and I can't help them as I have no money to do so myself, but I have to keep my "eye on the prize", so to speak. I have to keep in mind my goals, and I am focusing with determination on school right now. I am making this happen, and I am even proud of myself for it, odd though that is for me. I have self-esteem issues, and usually downplay my accomplishments because they don't seem great enough. But all of us must believe in ourselves, because who else is going to believe in us if we don't? So there should be no downplaying of accomplishments. We should all be able to be proud of ourselves for the things we manage to do in our lives. That's healthy, and not conceited. So, yes, I am proud of myself.

Saturday, October 09, 2010

Mental Illness Awareness Week 2010

In honor of Mental Illness Awareness Week, I'd like to encourage each of you who reads this to open a dialogue about mental health with at least one person you know. And if you really want to make an impact, try talking about it with the majority of people you know. There are several ways to do this. Personally, I sent out a mass email to most of the people I know, and said, "I know you are probably not comfortable with this topic, which is the reason why I am sending out this email", and went on to state some facts about mental illness, such as:

>One in four families is affected by a mental illness in this country

>People who live with mental illnesses are far more likely to become victims of crimes than they are to commit crimes

>The percentage of people with mental illnesses who commit violent crimes is about the same (3%) of the rest of the population

>You cannot tell someone has a mental illness by looking at her

>You know someone with a mental illness, whether you realize it or not. And if you do not have one yourself, you are lucky, because anybody can develop a mental illness.

>Mental illnesses are brain disorders, and the brain is the most important organ of the human body. Much more funding is needed to find better treatments or cures for these illnesses.

>People cannot get rid of mental illnesses by any act of will. A mental illness is not a character defect. It is a biological brain disease.

>There are twice as many suicides each year in the U.S. than there are homicides

Here are some resources online:

Here are some facts about mental illnesses from NAMI (the National Alliance on Mental Illness).

There are several, very short educational videos about Schizophrenia here.

This is a very informative website on mental illness with a good video.

There is a great public service announcement video here by Bring Change to Mind, for which Glenn Close is the spokesperson.

Here is a clip of a documentary called "No Kidding, Me Too" directed by an actor who used to be on the Sopranos and has Bipolar Disorder.

Check You Tube for more videos on combatting stigma and creating awareness about mental illnesses: there are a LOT of them out there.

Some more ideas for how you can impact the world and make it a better place for people who live with mental illnesses are:

-Post some facts about mental illnesses on Facebook or Twitter

-Take brochures from your local NAMI or Mental Health America chapter and put them in every doctor's office you visit

-Volunteer for an organization like NAMI. There are many ways to do this, and you can really create change as an advocate.

-Write, call, and visit your legislators. Let them know we need more funding for mental healthcare, not less. Let them know we need more community mental health centers, more crisis stabilization units, more respite beds, more homeless programs, more affordable housing, more case managers, more medication programs to help people who cannot afford the meds they need. Tell them your story. Tell them what helped you and what you need to continue to stay well. Or what your family member needs, etc... Use your voice. There is a big election coming up, and your legislators need to know what you expect from them if they are to be elected. Tax cuts may make some people happy, but tax cuts also usually mean cuts to vital social service programs that people need.

-Write a blog, or an article for a website, or a letter to the editor about mental illness. Share your story. Share the facts. Spread the word about what a mental illness really is, and that it's a far cry from the version seen in stigmatizing Hollywood movies.

-Talk about mental illness in your civic groups, or college groups. Have speakers come and talk from NAMI or another mental health advocacy organization.n

-Create a college group for students with mental health issues.

-Post flyers with phone numbers like the national suicide hotline at your college campus, or your local library.

If you have any other ideas, please add them here in the comment section!

Together, we can change things. As Margaret Mead said, "Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has."

Sunday, October 03, 2010

The Mercy of the Fallen

"The Mercy of the Fallen"
Oh my fair North Star
I have held to you dearly
I have asked you to steer me
Til one cloud scattered night
I got lost in my travels
I met Leo the Lion
Met a king and met a giant, with their errant knight

There's the wind
And the rain
And the mercy of the fallen
Who say they have no claim
To know what's right
There's the weak
And the strong
And the beds that have no answers
And that's where I may rest my head tonight

I saw all the bright people
In imposing flocks they landed
And they got what they demanded
And they scratched at the ground
Then they flew, and the field
Grew as sweetly for the flightless
Who had longing yet despite this
They could hear every sound

There's the wind
And the rain
And the mercy of the fallen
Who say they have no claim
To know what's right

If your sister or your brother were stumbling on their last mile
In a self-inflicted exile
Wish for them a humble friend
And I hope someday that the best of Falstaff's planners
Give me seven half-filled manors
Where half-dreams may dream
Without end

There's the wind
And the rain
And the mercy of the fallen
Who say, "Hey, it's not my place
To know what's right"
There's the weak
And the strong
And the many stars that guide us
We have some of them inside us

-Dar Williams

Six years ago, I was living in a bedroom I rented in a condo in Alexandria, Virginia. I had two male roommates who I barely ever spoke to in the condo. I barely ever left the condo. When I did leave it was to do desperate things to make money or to go to a doctor or a hospital, and that was all. Many weeks I ate a pizza I ordered and never bought food from a store. I had no car, because after I lost the keys and the car was not running properly, it was towed away, and I didn't have the money to get it back from the place it was towed to. So I lost my car. I had few friends, and none of them lived near me. I did go to protests against war, and those occasions provided happy moments, but mostly, I was alone, shut off from the world, miserable, confused by psychosis, and in pain. I was lost.

I had developed my symptoms in the years before that year and I had become estranged from my family due to my delusional beliefs that people had sexually abused me, and the accusations I made because of those beliefs. I lived 45 minutes from dozens of family members, yet, I never contacted them and they never contacted me. My father was not speaking to me, for reasons that I now understand completely. I had no real job. I was physically very sick. I did not know what was wrong with my mind.

I discovered Dar Williams during that time period, and I fell in love with her music. It touched my soul, and made me feel alive again. The song, "Mercy of the Fallen" held special meaning for me, because I felt the line about "if your sister or your brother were stumbling on their last mile in a self inflicted exile" reminded me of my sister and brother and how much I relied in my connection with them to get myself through my hard times.

So, fast forward to today. I went to see Dar Williams at the St. Pete Folk Fest with my brother. My brother has been stumbling through difficult miles recently, and I have been very worried about him. This was the first fun thing we have done together in a very long time. He did not love the music, but I did, and we both liked all the amazing art work on display. I was glad that my brother was in better spirits and in a better place in his life today than he had been recently.

After the folk fest, I went to visit my sister in her brand new apartment. She had been going through some old belongings, like pictures, letters, and photos, that she wanted to show me. She saved letters I wrote her full of sisterly advice, collages I made her while I was in psychiatric hospitals, and many pictures. Looking at those collages I made, and remembering being psychotic, in a psychiatric hospital art room creating those positive affirmations for my sister to increase her self esteem, reminded me of the strength of the bond we share.

I have two brothers and two sisters. My sister and my brother who I am speaking of here are the ones I grew up with. They are the two I helped to raise, and I have always tried to look out for them as well as I could. I have worried about them, and felt the pain of not being able to see them for long lengths of time, and I have been happy to see their accomplishments. I remember those days in those hospitals when I was so very lost and how much I relied on my sister and my brother as reasons to live. During many periods when I was seriously suicidal, it was my sister and my brother who prevented me from killing myself. I didn't want them to have a dead sister. I didn't want to put them through that. And I am alive today, in large part, for that reason.

In closing, I want to say that Dar Williams is awesome, and you should check out her music.