Thursday, March 26, 2015

How to Build a Support System

I used to browse the self-help section of bookstores, as a teenager and young adult. I would always be searching for answers, most of which were hard to find. I used to read a lot of psychology and mental illness books, looking for something, though I was not quite sure what that something was.

What I think now, in retrospect, that I was looking for was support. I didn't have any. I had no friends for a long time. I had very little familial support at all. I was a very lonely, isolated person. It was because I hated myself so much that I had a horrible time ever making friends, for most of my life. I had a horrible time believing I was capable of pretty much anything. It wasn't that I was really incapable; it was that I did not know I was capable. I was so used to being told all the horrible things about me by an abusive parent that I ended up believing them. None of them were true; it was all that person's issue. It was really not mine.

It occurred to me the other day that, out of all the self-help stuff I've read in my life, I've never actually seen anything entitled, "How to Build a Support System". I also thought about my last post on hope, and how the reason why some people totally lack hope relates to their lack of a support system. It is so hard to believe in yourself if you have nobody in your life who believes in you and lets you know they do. Conversely, it is so hard to have people in your life who treat you well if you don't like your own self in the first place. It's a real catch-22.

So I am hoping to offer some advice on what has worked for me in trying to build up a support system over the majority of my life.

1. Start with books. If you don't know how to make friends, I'm not going to tell you to go join some club and get out there and meet people, because that might not be possible for you. I found some of my first, best, and oldest friends in literature. I found support in poems by authors who were strong women like Adrienne Rich, Marge Piercy, Joy Harjo, June Jordan, Alice Walker, and Maya Angelou. Other strong, female poets like Anne Sexton and Sylvia Plath wrote about issues I could relate to. I found some support and help through them. I happen to love poetry; not everyone does. I find for me that it is much easier to read a poem than a novel; I honestly cannot read novels. It requires too much concentration, and I don't really like novels. But lots of people find inspiration in novels, so maybe you would too. Nonfiction work is where I found the most hope. I'd read books like Girl, Interrupted, as a very young woman to understand that other young women had experienced mental illness and survived, even thrived, and got better.

2. If you are financially able to, find a therapist. Make sure you like your therapist. It's very important that you feel like you are being heard in therapy, and that your therapist possesses enough skills to really help you. It is very important that you develop trust in your therapist, which sometimes takes a while. It is vitally important that your therapist knows about your illness, has read about it, has a working knowledge of it, but at the same time, that she/he is interested in learning from you about what it is like. Not all therapists are helpful. I have had some that were not. I have had others who changed the entire course of my life. My current therapist is fantastic, and the one before her was quite great too. The one I had as a teenager helped me get through anorexia (sort of, most of that work had to be done by myself later), and helped me survive things I didn't think I could handle. That is what good therapists can do for you. Everybody needs somebody to talk to, and people with mental illnesses get much better with therapy than without it, most of the time.

3. Support groups are not all bad. I know in my post on hope, I said that I don't like support groups. One of the main reasons I don't like them is that, when I experience auditory hallucinations and paranoia, I think everyone in the group is talking about me, calling me things like "Jew" and discussing how I'm going to die in the upcoming second Holocaust. I think they are saying hateful, covert things using what I refer to as, "double speak", and it makes sitting through a group a living hell. The other reason I don't like support groups is that I find them depressing, and I cannot afford to let depression into my existence anymore. So for me, they really don't help much, unless for a short-term period. When a family member of mine was severely ruining his life with alcoholism, I would go to Al-Anon. I am related to many alcoholics - one reason I never touch alcohol and wouldn't do so if you paid me. But I only went to Al-Anon when it was needed. I didn't want to stay in it for a lifetime like a lot of the people involved in it do. I just am not that kind of person. But for other people, Al-Anon is a great support, NAMI Connections groups are a great support, other 12-step groups are a great support (particularly if you have an addiction yourself), Depression and Bipolar Support Alliance groups are a great support, and groups I don't know anything about, all over the U.S. and all over the planet, are a great support. If you want people to talk to who can relate to you, support groups are not a bad idea for something to try.

Another type of support group is online groups. When I wasn't doing as well as I am now, I relied heavily on those groups to get me through, for a while. I felt like I found kindred spirits there. I felt like it was a good place to vent. Now, I don't find them helpful and I rarely go to them, but that is largely a personal choice. It is all about what works for you, not me. You have to figure that out for yourself. I wouldn't recommend spending hours on end in internet support groups, however. I wouldn't recommend that because, as I mentioned in my post on hope, some people actually do just go there to elicit pity from others, and this negativity and constant reading about others' crises will only bring you down. It isn't uplifting to read that stuff all the time. I can't afford to spend large portions of my time doing things that bring me down, because I don't want to be down!

4. Join some sort of place where you can meet people who you share a common interest with. For many "consumers" (ie, people living with mental illnesses), this will be a mental health organization. In the United States, the biggest mental health organization is the National Alliance on Mental Illness. In the U.K., Mind is a well-known organization. There are other organizations I listed here, a long time ago.

People involved in mental health organizations may or may not have a higher level of awareness about mental illness and stigma, and the damage stigma creates, than people you meet somewhere else, but hopefully they will have this higher level of awareness. And sometimes, you will find them to be more understanding to you than other people are, and more kind than some others may be in your life who do not possess this level of awareness. This will not always be the case, but if circumstances are right, you can find some strongly supportive people within these organizations. I met people there, and those people have visited me in the hospital, and encouraged me to do things I did not always believe I could do at all, like public speaking, for example. A real bonus to getting involved in a mental health organization is that you can make a difference in the world you live! You can create awareness in those who are unaware about what it's like to live life with your illness, and you can get involved in advocacy and education efforts. You can even become a support person for other people, which is when you will really feel rewarded. It totally changed my life when I started volunteering for NAMI. It gave meaning to days that were otherwise meaningless.

What about if you don't want to get involved with a mental health organization? Or if you know longer feel like that is where you want to dispense your time and energy, maybe because you have other interests? Look into organizations for a hobby you have, a fitness group, a reading club, a church, etc. When I joined what I refer to as my non-church church, I met all sorts of intelligent, intellectual, kind, supportive people. It was wonderful, and it was one of the things I did right in the past year that helped improve my life.

Social justice causes are my favorite type of activity. If that's up your alley too, then, by all means, become an activist! You don't have to hold protest signs in front of the White House for months like I did when I was younger to be an activist. You can help run organizations, organize petition drives, do tabling at events, and spread the word about your cause. There are a myriad, million causes to get involved in that thrive on energy and effort, not money. If you want to do that, think about women's rights! Think about animal rights! Think about world peace! Think about combating climate change and corporate greed and taking the money out of politics and increasing the minimum wage! Think about any cause that you care about. I guarantee you there is another person who cares about your cause, and probably a few organizations that revolve around it. All you have to do is introduce yourself and try it out.

The National Organization for Women also radically changed my life. I joined NOW after my abusive, drug-addicted, loser boyfriend left me in 2008. I hated myself, largely due to having wasted three years devoted to a guy who taught me to hate myself. He would tell me how fat I was (I gained 100 pounds in my first two years on antipsychotics; it does wonders for your self-esteem when the guy you love points out to you every single day how fat and disgusting he thinks you are, especially if you have the bonus of being an eating disorder survivor), and he and I really never had anything in common. The only thing we had in common was dysfunction. We met in a psych hospital, after all. Great meeting place! After he was gone, I wasted about a year grieving the "loss" of this jerk, and it was during that time that I returned to my feminist roots, and got involved with NOW. I made friends there of all ages, mostly women older than my mom though, and I volunteered right away. Pretty soon I was very active and remained that way for years. I'm not really active now, but that's simply because I do not have time. It isn't because I didn't love the involvement I had there or that I don't cherish the friends I have from there. I do.

5. Do you have a case manager? Or a home health nurse? You might need one. I suppose I should have put this at the top of the list. I had a wonderful case manager for seven years. She was the first person in my support system who understood what I was going through and kept tabs on me. We talked every week. I met her right after I got diagnosed with Schizophrenia in 2005, and she stayed in my life. When the agency would want to her to close my case, because due to lack of funding where I live case management is hard to get, she would fight for me, because she knew I needed her. It broke my heart when she left the agency, but I will always have the memories of that time. When my apartment was in bad shape, she's the only person I'd let inside. She'd make me let her in; she was quite persuasive, but more importantly, she didn't judge me. She'd see the mess and say, "Okay, let's start cleaning up!" She didn't get on the phone with somebody and try to get me evicted. She'd actually help me clean. She wasn't paid to help people clean. Later, I'd have a friend I paid to help me clean, but she did it because she was incredibly kind and always went above and beyond the call of duty. I am doing better now, and I don't need people to help me clean, but back then I was not doing well.

So you don't know how to get a case manager? Well, usually in the U.S. they come via community mental health centers. The best care is not always found via these centers, because particularly where I live, these centers are severely lacking in efficient funds to operate, but the benefit of going to a community mental health center for your psychiatrist and therapist appointments is that you might also get a case manager there. You can also sometimes find a program that offers case management, call them, and tell them you need their help (I've done this, and it worked).

6. If you go to school, and you like it, try talking to your professors about your interests. For me, one of the most supportive people I've ever known started out as my professor a long time ago. I am still friends with him; he's a good mentor. Other professors I've had have also been very helpful. They helped me by teaching me to believe in myself and my capabilities more than I ever did before I knew them. They made me believe my brain wasn't all bad, after all. They taught me to value my intellect. I am still in college; it has taken me many, many years to get to be close to graduation (December!), and so professors are still helping me. Right now I'm thinking about graduate school in the future, mostly because of professors who have believed in me. I might not be able to do it, but I used to be convinced I couldn't get through a bachelor's degree at the university I attend. I have gotten A's in every single class there. It was professors who convinced me not to drop out when I had psychotic breaks, and it will be professors who I thank when I graduate.

7, If you work, try to hang out some time with your coworkers, maybe just one coworker. I had mostly just one friend I made at my job where I've been for almost seven years, who I would do things with outside work. It's not the kind of job that is conducive to being able to socialize with people. But I like her a lot, and although we never talked about a lot of personal things, we did have fun when we got together a few times. I'm not good at making friends at work, or anywhere else (I know this sounds weird to say after I just got done talking to you about the ways I found support), so this is not an area where I am some kind of expert at all. But, for other people, simply finding someone at work to go to a movie or have coffee with can be a big change that helps.

The same is true for doing volunteer work. Sometimes in volunteer work, you don't make friends, but you do make coworkers, who you can at least chit chat with about things. If you're unable to work for money at all, then volunteer work may be something you want to consider. Some areas of the world have "clubhouses" for people with mental illness. There is an excellent one where I live called Vincent House. It has helped many people with mental illness by giving them volunteer jobs that sometimes lead to employment for money.

8. Get a pet. I don't know what on earth I would do without my cats! I am the perennial creepy cat lady, and  always will be. If I had more space for them, I'd have more than two, probably I'd have ten!
Having a pet is an excellent idea when you lack support, and a good addition to your life even if you do have some support. Many, many animals die every day on this planet because no one rescues them (rescue a black cat, they are least likely to be adopted), and many find happy homes when someone like you learns to love them. Pets are kind, compassionate, insightful, and strong companions. Not only that, they give you a reason to get out of bed if you're depressed or apathetic. They have to be fed; dogs have to be walked; litter boxes have to be cleaned. Even better, you can talk to them. My cats love it when I talk to them. They come up to me and climb on top of me. One of them follows me around my apartment and tries to "talk" back to me. It is hysterical. We have these conversations: "Hi Ribbit, how are you today? What did you do today? Did you try to kill Spooky again or were you nice to her? Did you play? Did you sleep a lot? Mommy went to work.." "Meow, meow, meow, meow". "Yes, I'm sure it was a rough day for you, Ribbit, you work so hard, perhaps you should start paying rent now!" "Meow, meow, meow, meow". "Are you hungry?!! Let's have dinner!" "Meow! Meow! Meow!"

9. Visit your neighbors. I had an elderly woman who lived below me for years. I'd go to her apartment and just sit and chat with her. We both had mental illness, but she was more isolated than I was. You have to branch out to others when you're looking to build your support system, and sometimes, being supportive to someone else is the most important aspect of your support system in the first place. She would get so excited when I'd take her to lunch, because she had no money or transportation or support at all. She would say, "That lunch was so WONDERFUL, Jennifer! Today is like Christmas!" and I would just laugh because the tiniest things that didn't mean much to me really meant the world to her. She still tells me I'm her best friend and she loves me.

10. Call someone once in a while. I don't have a lot of friends I call. I have more friends I never call than the few I do. I don't have a lot of friends I go places with either. I do need to work on this at some point, I guess. But I have two friends I call, and they are close friends of mine. One of them, I find now I don't really need to spend as much time with as I used to because it drains me a lot, but I still value both of these friends. You need at least one or two people you can call on the phone.

11. Finally, make sure you keep non-supportive people out of your life. If someone is negative all the time, critical of you all the time, bullying to you, or mean to you, or abusive to you, then get them out of your life. You deserve to be treated with dignity, respect, and love. You don't need to waste your time putting up with a bunch of crap from someone who wants to bring you down. Cut that person out. It's not always easy, but I've had to learn that if you do not send boundaries with some people, what you'll end up doing is resenting them a lot and feeling incredibly miserable. Don't waste your time. The people in your support system aren't just people you need because they exist, you need to have people who are worthy of spending time and energy on. You don't need to take care of people or be kicked around by people to have a support system. Eliminate the negativity, and you will feel much better.

12. The most important person in your support system looks at you in the mirror. If you don't learn how to take care of yourself, be kind to yourself, and, yeah I know it sounds cheesy but even to love yourself, then you will not be a happy person. It is vital, crucial, and necessary to be your own best advocate, and to take care of you. Nobody is ever going to care as much about your existence as you do, after all. You have a lot more at stake in so far as what happens to you than anybody else does; after all this is YOUR life. You must learn to take care of yourself. And I put this last on purpose. It's very hard to love yourself when you feel like nobody cares about you. So first, in my opinion, you need to find some people who are going to care about you. But, then, eventually, you must care about yourself more than anybody else does, because self-love is vital to thriving.

I hope this article made sense and was helpful to at least one person. Leave a comment if it helped you; that lets me know things are worth writing! Thanks!

Thursday, March 19, 2015

Criminalization of Persons Living with Mental Illness

I have been doing research for my senior seminar course in the social sciences. *(Yes, I am graduating later this year!). My research is for one, big paper that will be finished at the end of the semester. I wanted to talk to you about my project, because many of you may be interested in this. I am researching how the era of deinstitutionalization (the clearing out of people living in psychiatric hospitals in the U.S.) led to trans-institutionalization, which is the people who have mental illnesses and end up going through the revolving door of jails and prisons. My argument with this paper is that more funding, in the state where I live (Florida), and the county where I live, for programs such as FACT (Florida Assertive Community Treatment), intensive case management, and programs that provide housing plus treatment would be a way to combat the problem of rampant homelessness and incarceration of people living with mental illnesses.

In 1955, there were half a million people living in state mental hospitals in the United States. Now, there are fewer than 40,000 people living in those hospitals (and most of those hospitals are now non-existent). Where did the people go? Well, since funds were never adequately provided by the federal and state governments to create the community mental health system that was supposed to help all of us with serious mental illnesses, many people have ended up living in shelters, on the streets, and in jails and prisons.

The reason many homeless people go through the revolving door of the criminal justice monstrosity we have in this country is that they get caught committing petty crimes such as trespassing (which can be sleeping on a park bench), public urination (the parks where I live keep the bathrooms locked so homeless people can't go into them), carrying open containers of alcohol (many people with serious mental illness self medicate to deal with their issues which are not being treated), and other ridiculous things.

When they go to jail, people with mental illnesses who are receiving Social Security Disability (SSDI or SSI) benefits end up losing those benefits, and therefore, they lose their Medicaid and Medicare insurance. This means that when they come out of jail, and they are not set up with the proper social supports to provide them with an income and a way to obtain their medication, they go without their medication. When you are psychotic, and you go without your medication, you are likely to do weird things that may land you right back in jail. And that is exactly what is happening in this country.

The Miami-Dade County Jail is the biggest "mental health provider" in the pathetic state of Florida, where mental health funding is so ridiculously low that we rank 49th out of the 50 states. The biggest mental health "provider" in the United States is the Los Angeles County Jail. You see, jails and prisons are the new state hospitals. That is where people are ending up. Once they end up there, they are not only costing tax payers tons of money, which is what every right-wing conservative seems to care about the most, and they end up not getting the medications they need. Sometimes, in jail, people go without any medication at all. Other times, once they do get their medication, it is a different medication than what they were on before, which is cheaper for the jail to provide than the med that helped them. Do you see how this is a problem?

Additionally, more people commit suicide in jails (and particularly in solitary confinement), than the average suicide rate for the country. I mean, you are far more likely to end up killing yourself in jail than you are outside of jail. I have actually found this through extensive research.

I am so lucky that I never went to jail. It was an amazing thing that, while psychotic, I stole cars and got away with it, and entered stores pretending to work there, but never got arrested even when people figured out what I was doing. One of the reasons I got away with these things was white privilege. I have white skin, which automatically makes me less likely to get arrested in this incredibly racist country than if  I was a woman of color. Also, I am female and white too, which makes me less likely to get arrested than a man of color. It is a phenomenon of racism, but it saved me from being incarcerated, because nobody thought I was a criminal. I didn't "look" like a person who would steal a car. I just did it, because the voices told me too, and I got away with it. I should mention, all of this happened over 11 years ago, so by now I am way better and do not do illegal things other than sometimes jay-walking when there are no cars at an intersection. Further, I have talked to the police in Crisis Intervention Team trainings about the things I did and the fact that I did not get arrested for them. I tell the police this because, should I have come into contact with law enforcement during any of these encounters, most likely if they were not CIT trained officers they would simply have arrested me. I could have been charged with felonies.

It angers me a great deal that there are so many homeless people and so many incarcerated people in this country. I have been homeless myself three times, though each time I lived in a shelter, never on the streets except for a few weeks when I slept in the back of my car. That all happened many years back, before I was diagnosed, before I even knew I had a mental illness that was not just depression, and before I was on medications that I needed. I was lucky I didn't end up in the streets, sleeping on park benches, getting raped like a woman I met in a homeless shelter had been while she was sleeping on a park bench, and getting arrested for trespassing like so many others have been. But it could have been me. When I see the people experiencing homelessness and living on the streets in my neighborhood, I think, "That could have been me". I also smile and say hello to them, because this does not happen much to people who are homeless on the streets. They are dehumanized by the people who ignore them and look away from them and think they could never BE those people living on the streets. Anyone of us could be those people. Anyone can develop a serious mental illness. Those who do not have them are fortunate. Those who have them and are able to keep roofs over their heads and stay away from the military industrial complex are also fortunate. But being that we are fortunate, we owe it to the people whose voices are not being heard to speak their truths for them. We need to speak up about this topic.

We need to speak to legislators about it. We need more programs like FACT (Florida Assertive Community Treatment) or ACT (as it is called in many other states), more intensive case management, more low-income housing. And we need the funding for all of these sorts of programs. Florida slashes it's budget for mental health funding every chance it gets, because the legislators do not care about us, and those of us who are living with these illnesses are not making enough noise to get their attention.

I want to live to see the day when 10,000 people march on Washington to express their demand for mental health care. I want to see that. I have been in marches on Washington which did have 10,000 people protesting the wars on Afghanistan and Iraq, but I have yet to hear of a march on Washington about mental health. I have been to a protest in D.C. for Chronic Fatigue Syndrome (my former diagnoses, before Lupus), and there were only about thirty people at that protest (but it still meant something). I want to see US, me, you, your friends or family members living with mental illnesses, NAMI advocates, all of us, march on Washington and demand Assertive Community Treatment, Crisis Intervention Team trainings for all law enforcement officers, well-funded community mental health centers in ever area of this entire country, mental health courts, and other necessities to combat the trans-institutionalization problem that exists. I want to see that happen in my lifetime.

Any suggestions on how to make this occur?

Sunday, March 15, 2015

Trying to Practice Mindfulness

I've been trying to practice mindfulness. I am no expert in this. I have no real education about it. My first introduction to mindfulness was in 2005, when I had my longest hospital stay of all time - six months - and there was a therapist who held DBT (dialectical behavioral therapy) groups, and he talked about mindfulness. Frankly, I thought it was stupid and pointless then. I have never been a person who has the capability of truly relaxing much. I never stop moving (more on that later); some part of my body is always moving. I have never, ever, been able to meditate. When I was in the hospital last year and the year before, there were meditation groups, and I hated them. I even voiced my hatred of them during the groups, to the therapist. One day she said to me, "Jennifer, I know you say you  never relax and you don't know how to do this, but I have seen you do it; I have seen you relax". She saw me do it in art therapy. I love art therapy! I realized she was right. When I sat down to create things in art therapy, I relaxed. So, after I got home, for a while (not lately), I was doing my own art therapy projects. Before I got an antennae from my friend for my TV, I did not have any television at all for months. I had to do something with my time, because there was no tube to zone out in front of. Having no box to lose myself in, I did creative work. I actually felt more creative, because I was not watching TV. Seriously, I did.

Now, I have an antennae that gets a few channels, and I do sit or lie on my couch and zone out in front of it for a while some days. I do. This has not been a useful way to spend my time, however. I can feel that in my gut. The TV is a brain killer. It is an energy zapper. It can really ruin your life. When I was a little kid, we always had the TV on in my house. I grew up that way. My mom, who I lived with until I was 23, still has her TV on all the time, whenever she is home. She even keeps it on when she is asleep. Tonight she came by my house. She said, "So, you leave your TV off??!!" I had it turned off. Yes, often, I have it off. This is weird to my mom. She grew up in a home where the TV was always on too; it's a learned behavior. So, while I'm grateful to my friends for giving me an antennae, because, yeah, sometimes Grey's Anatomy rocks, I feel like reading more now, and I often turn the TV off and read. I also often go on that smart phone I mentioned in my last post, but I'm going to be trying to limit that too.

Another thing I started doing when I got home from the hospital last year, was practicing mindfulness. I started walking. I have Fibromyalgia, arthritis of the cervical spine and the knees, and Lupus (all of this started when I was 20 years old; 20 years ago). So exercise is hard. When I first started walking again on a regular basis, I could only do 15 minutes. I would get worn out and in pain if I walked more than that. I really wanted to be healthier, and to lose weight (I am obese), so I started walking more, and more. But when I walked, I was taking everything in around me. I was purposely focusing on the trees, the birds, the ducks, the squirrels, the pine cones, the pond, the daisies, and everything else in nature that is in the local parks. That was in August. I did that without thinking "I'm going to be mindful now", but at the same time, I did it knowing that it was a healthy thing to do. I did it to find peace, calm, serenity. I had started walking in the hospital, and had started deep breathing in the hospital, and I could tell it was helping. Now, it's March, and I walk as many days of the week as I can. I can walk for an hour now, and this, along with major dietary changes, is how I lost 45 pounds in these seven months. A couple weeks ago, I saw my rheumatologist, and she said that I am no longer prediabetic! This was excellent news. It is very hard to avoid becoming diabetic if you have prediabetes, and it is also very hard to get rid of prediabetes, so I felt really happy and grateful that I had managed to do this.

One day, because there are so many problems with crime in my neighborhood, and it is kind of scary to walk through sometimes even in broad daylight, I went to the YMCA. I thought about joining (and am still considering it because when it's 90 degrees outside, it is hard to walk outside), and I worked out on their treadmill. This was not peaceful. This was a huge assault on my senses. It was total sensory overload. They had five TVs turned on; each one was on a different channel. Each TV had the text running at the bottom of the screen. They had music blaring. And I was trying to listen to my own music on my phone, while walking on this treadmill. I burnt a lot of calories, but I hated every minute of it. It was not a walk in the park!

Walking through parks makes me feel better. I realize that this has helped me feel more focused. I realize that I am more conscious of the choices I make now than I was six months ago. I think more. I can read books, and I read a lot (which is, in part, due to Saphris working extraordinarily well for me). Somehow, even though I am not too educated about mindfulness, the walking is like a form of meditation, and it is helping me. Recently, I tried to get more into mindfulness and practice meditation. That did not work for me. I have OCD as a secondary diagnosis (Axis II), and when I try to sit quietly and not move, I cannot do it. It is basically impossible. I would like to be able to do it. I want to be able to do it. But I have to be careful at doing things that don't help, because I start having problems with my thoughts, when I do that. I think meditation is obviously beneficial, however. So I will keep doing my walking meditations, and maybe someday I can sit like a Buddhist and really manage that. Today, there was a talk at my church by a Buddhist humanist, and I thought we had to say was excellent, so I bought his book. I've also got a couple of Thich Naht Hahn books, and I need to read those. But, one step at a time.

Here are some pictures I took while walking in the past week:

Monday, March 02, 2015

One, Two, Three - Hope!

The title may sound simplistic, but I totally believe that hope is vitally important in recovery/coping with mental illness. I think it's as important a medication as any pill or injection.

I recently got a smart phone for the first time. I haven't had internet at home for about a year now, and I think that was actually good for me - not having it. Now that I have the smart phone, I find myself looking at posts in some of the Schizoaffective Disorder and Schizophrenia support groups I signed up for long ago, on Facebook. Normally, for a long time now, I have paid no attention to those groups. And that was good for me. 

The groups are full of people who lack hope, lack sufficient coping skills to manage their illnesses, and spend inordinate amounts of time on Facebook support groups talking about how miserable they are or how bad their symptoms are. I know that sounds judgmental of me, and it is. Human beings are judgmental all the time. But what I am trying to say is, being around negativity and people constantly complaining about how bad their problems are whilst they do nothing to actually address those problems other than posting their suicide threats on Facebook groups to get attention, well, this is not good for me. It's not good for anyone to be around that. It's not healthy. And I have often wondered what on earth people are actually accomplishing in their lives, if every ten minutes all day, every day, they're posting how horrible their lives are on Facebook groups.

God, if your life is that horrible, get off the internet and take some actual action. People have told me how hopeless they are, and one person the other day posted that he was an atheist and he saw no point in living because he doesn't want to be disabled by mental illness, so he wanted someone to give him an answer on why he should stay alive. Guess what? Nobody can do that for you. If you view the possibility of becoming homeless or having to work a menial job, or having to rely on SSDI to live (Social Security Disability Income), as a reason to kill yourself, well, sorry but I don't feel sorry for you. See, I'm one of the many people who has been homeless multiple times, who has worked menial jobs all her life, and who is relying on SSDI to survive. So don't tell me that I should kill myself, OK? Thanks. 

I told this person that nobody can give you meaning to your life. You must actually create that yourself. You have to work at that. You have to cultivate the meaning you want. Like I've said before, it's important to have other people in your life, and it's important to do things that you really want to do and not just procrastinate or give up and feel sorry for yourself.

See, I know all about how that behavior is so easy to fall into. I used to do it all the time. "Oh god, I'm overwhelmed, so I'm going to lie in my bed thinking about all my problems and thinking about how overwhelmed I am and thinking about killing myself." I've done that. I've been there. That used to be the story of my life! I used to go online and tell my "friends" about how much I wanted to die, too. Yes, I've done that. And you know what? Most of those friends abandoned me for good reason. I was a pathetic case back then. I had no actual life, no real friends, and nobody to talk to other than people online. Yes, I was psychotic, and no, I didn't know I was psychotic. But once I found out what my illness actually was, and what psychosis actually was, I tried to take action to deal with it. And I really think it's pretty obvious that this is what people need to do. If you want to spend your whole entire life in your bed, talking to no one but people on the internet, feeling sorry for yourself and wondering why you're so miserable, well, newsflash: Your behavior is exactly why you are so miserable.

Hope doesn't come in a bottle. It comes from your gut, your mind. It comes from you. And you might have to look around for it. You might have to find books by people with the same illness you have who have improved. You might have to find videos that encourage you. You might have to spend years of your life in therapy trying to maintain your existence. You might have to reach out for help, but in a productive manner, not in a, "please feel sorry for me" manner. You might have to make sure you're on the right medication. You might have to tackle your financial problems one at a time until they stop overwhelming you. You might have to exercise, eat healthier, practice mindfulness, adopt a pet, go to support groups, get a job, get out of your home once in a while, go back to school, pay your bills, sleep properly, take care of yourself. Perhaps, most importantly, you might have to change.

Change is not easy. Feeling sorry for yourself is very, very easy. Do you want to take the easy way out and live a life devoid of meaning and purpose, constantly wondering why you're alive? Nobody can tell you why you're alive. We're born, we're alive. Then the rest is up to us. It's up to what you do with your life. If you do nothing, most likely you're going to feel like crap about the fact that you've wasted years doing nothing. Do you know how many years I wasted like that? Way too many. Way, way too many.

If you want hope, you have to change. You have to do the things that cultivate that hope. You have to give meaning to your life, by yourself.

Join a church, join a club, get out, do things, volunteer if you can't hold a job, work if you can hold a job, do something that gives your life meaning. If there's a mental health advocacy organization near you, like NAMI (National Alliance on Mental Illness, in the U.S.), then go there and volunteer! They need your help. You can give a voice to the people unable to voice what it's like to be ill. If you can write about it on Facebook, then you can talk about it in person too. You can get up in front of a group, and tell them about your illness, and what you're doing to deal with it. This not only creates social change and decreases the stigmatization of mental illness we all face, but it also can give you a reason to live, and a sense of purpose and direction. I'm not just saying this because I volunteer for NAMI, but rather because I also know other people who volunteer for NAMI (some more often than I do), and it helps them. It really helps them.

You must do something if you want to feel better.

Personally, one of the things that has made me feel better is staying out of those negative "support" groups. I found myself feeling worse lately when I went to them. I don't recommend going into them unless you're really unable to do anything else to have a person to talk to. If you can go to a therapist, that will help you a lot more than talking to other people who are constantly online talking about how hopeless they are.

I find support groups, on the whole, to be incredibly depressing. None of them have ever made me feel better, not in person, not online, not anywhere. I hate support groups. But that's just me. I've been asked multiple times to run a NAMI support group on a weekly basis, which requires a year-long commitment, and I refuse to do it. That is not to say that NAMI support groups are not helpful; I'm sure they are. It is just that I find that the level of stress and negativity I get from groups far outweighs any help I get from them. So I don't go to them. I'm not saying you shouldn't go, because for many people it's a big help. I am just talking about what has worked for me.

My mom is a very, very, very negative person. All she ever does is complain. Every single thing that comes out of her mouth is, "I'm mad,  this could have been better, this is all wrong, we should have done this and that instead of what we did do, nobody cares about me, my life is pointless, my house is a wreck and I have no money to fix it, I need to borrow $100, I'm depressed, my life is meaningless, everyone hates me, I have no reason to get out of bed, I hate this, I hate that, I hate everything".

That is my mom. I went to Maryland last week to spend time with my 86-year-old grandmother who has rapidly failing health, and I had to spend that entire time with my mom. It drove me "crazy". It makes me stressed out and sick and unable to sleep and angry. I HATE spending too much time with her because she has been the same way my entire life, and she has never, ever changed. She does not go to therapy. You know why? Because she doesn't even think she needs to change. She's perfectly happy being a miserable person and trying to force her misery onto everyone around her, which is why people do not want to be around her. One of the biggest problems I have in life is spending too much time with my mom, and not setting enough boundaries. It's something I've worked on over the years in therapy, but I really have not done enough about it.

I know for a fact, from growing up all my life with my mom that some people really choose misery as their theme for their lives. And I can't stand it. I can't stand being around that, and I don't ever want to be like that again.

So limit the time you spend with negative people, whether they be online, or in person, your friends or your family or your neighbors. Get away, take some time to do deep breathing and enjoy nature. Go outside, alone, and look at birds, and trees, and flowers, and the sun and the moon and the stars. Set your intention for the day, every day (I learned this from my therapist). Try to make yourself focus on the good things in your life and not just the crap. Try that. It will make you feel a lot better, once you get the hang of it.

Try to have hope. Do whatever you have to do to give yourself hope. Because, without hope, you will think every day is pointless, and the world is ending, and you have no reason to get out of bed. If you feel like that, you probably feel pretty hopeless. If you don't want to feel hopeless anymore, you have to create hope. It really cannot be done for you. Antidepressants can make you less depressed, yes. Anti-anxiety pills can make you less anxious, yes. Antipsychotics can make you less psychotic, yes. I take them all. But what they don't give you is hope. Hope comes from living your life. Please don't waste your life on the internet in support groups or reading blogs like mine every day. Yes, I just said that, don't read this blog too much, unless it makes you feel uplifted. If it does make you feel uplifted, then great! But if it doesn't, don't read it. The last thing I want to ever do is spread negativity through my writing. I used to write litanies of complaints on here. I don't do that anymore. It's not a good thing to do for myself or for anyone else who might read it. Sure, there are lots of problems in my life, and everybody has problems. What I want to write about now is the things I do to tackle the problems rather than letting the problems tackle me.

I am grateful to anyone who reads this blog, some of whom are people I met in Facebook groups. I'm grateful for the few positive posts I've ever read in those Facebook groups. I'm grateful to the people I became friends with online because I met them in those groups. But I don't go to those groups much anymore. When I do go, it's to tell people how much better I'm doing, because I figure it might give them hope. I used to be a person who lacked hope. I understand how hard it is to make your life meaningful. But you can do it. You must do it. There is a reason why you're on this planet, and you're not going to find that reason on a computer screen. You're going to find it when you follow your dreams. I'll be 40 when I finally graduate in December with my Bachelor's Degree, but you know what? Nothing and no one are going to stop me from graduating. I don't care how hard things might get if something goes wrong in my head, I am determined to finish college no matter what. I refuse to give up again. Please do not give up on yourself.

Thursday, February 12, 2015

A beautiful, fabulous day and the importance of having other people in your life and holding onto hope

Folks, I'm going to tell you about my birthday party. It was really incredible. I told people it was one of the best days of my life, and looking back, that is true. It really was. It was last weekend in a local public park, in a shelter overlooking a lake. I got there early to set things up, and my friend who I've known for ten years (ever since we lived in a group home together), who is one of my very best friends, came with her husband and nephew to help set it up. Then my dad and his wife came, and much to my surprise, along with them was a cousin of mine I hadn't seen in years! He lives in Baltimore. He's a lawyer, and we don't really ever talk, however, he came down here for my birthday party to see his "only older cousin" (I'm the oldest of 25 grandkids on my dad's side of my family) turn 40 before him. That was really meaningful, and I will tell you why. When I was very little, until the age of six, we lived in Baltimore, so this cousin was in my earliest memories. We would play together, and as my grandmother used to say and my mom agrees, I'd boss him around. I made him cry, allegedly, sometimes because I'd tell him what to do. But we were buddies; he was the first boy grandchild, and I was the first girl. We had a "Brat Club" and I was "Queen Brat" and he was "King Brat". Then, when I became psychotic, at age 23, I was living in Baltimore again, with our grandparents. And a horrible thing happened. I'd been having paranoia and delusions, with some visual hallucinations that I thought were real because I had no idea I could be psychotic. And my dad and I had a huge fight, which ended when I locked myself in a room and called the police to tell them he was going to kill me. I really believed he was at the time. In reality, he did hold his fist up to my face. However, he was not going to kill me; I was paranoid about that.

So the police came. My cousin's dad, who is my dad's oldest brother, was a police captain for this police department. And he came. And another uncle came. They wanted to talk to me about whatever was wrong with me that I would do this to my dad. I was angry. My dad had screamed at me, and scared me, and I really believed he was going to kill me. I remember all this so clearly, as if it was yesterday. And my cousin was sitting in the living room when my grandparents were back home. He was sitting there, when my grandmother, who I loved all my life, said angrily, "You need to see a psychiatrist, Jenny". And I told her that her son needed to see a psychiatrist; I didn't know I needed one. My cousin helped me dig my car out of the snow. And that was the last time I saw that cousin for the next approximately nine years. That was the last time my dad had anything to do with me for six years. I never saw my youngest brother (from my dad's second marriage) until he was five years old, after I got diagnosed with Schizophrenia, and apologized to my dad for numerous things.

So it was meaningful for this particular cousin to come to my birthday party. It was meaningful for my dad to come. It was really cool that both of my parents were there; something that never happens! And I got a picture with my mom, my dad, and my brother and sister who I helped raise after my parents got divorced. I don't have a single picture with all of us in it from my entire life. So that was really neat. The last time we were all together and getting along was when I was about 12 years old. My parents separated when I was 13, and divorced when I was 14. Six months later my dad was getting remarried to a woman I hated before he ended up hating her too. She was a horrible human being in the way she treated me and my brother and sister, but I'm over that now. I never think about her or care about that stuff anymore.

The other thing that was meaningful was that about 46 people showed up for my birthday party!! I got home that night and wrote down the names of all the people there! Oh, and the biggest and best surprise was that my sister came down from Baltimore!! I had seen her at Christmas, but she's been living out of state for about a year and a half or two years now, so I rarely see her. She never calls me, and I miss her a lot. It was so fantastic when I saw her! My mom said she wanted me to turn around, so she could put a hat on me. I was griping about not wanting to wear a stupid hat. She put this goofy tiara with huge pink antennaes that said "40, 40" on it on my head, and put a necklace with big "40" beads around my neck, and put a big, plastic cane that said "Over the Hill" in my hand. Then she said, "Okay, now turn around". I had my eyes closed, so I had no idea what was going on. I turned around, and facing me was my sister. I started jumping up and down like a little kid, screaming, "Oh my god! Oh my god! You're HERE!! You're HERE!!". And then I hugged her really tight for a long time while everybody laughed at my goofy reaction.

It was wonderful, because so many fantastic folks were there! I couldn't even believe that 46 people liked me enough to show up at my birthday party! I was in awe. I think some of the people there were surprised at how many other people were there too. My brother's girlfriend sent me an email saying she was so amazed how many people cared about me and loved me that they would be there for that party. It was really uplifting in so many ways.

We also had music. I invited my former professor and friend's daughter to play the cello, and I asked some musicians I don't even really know from my non-church church to come and play their music, and they did. So when people wanted to have cake, they played "Happy Birthday" with their instruments as everybody sang. Twice. The guy that was the lead musician of the group from my non-church church said, "That wasn't loud enough; I want you to do it again so the people across the lake can hear you!". And everybody sang really loudly. I was embarrassed to have all these people staring at me. These are people I like and admire. But then I looked around for a second at all the people staring at me and took it in. I realized, you know, my life has changed a LOT. I used to have zero friends. I used to spend my life alone in my bedroom - regardless of the location of where I was living, some bedroom in some dwelling in some state - and I literally had no friends except people I corresponded with on the internet. That was it. I never had people to converse with, people to go places with, people who acted like they cared about me much. Not at all. For a very large portion of my life, I was completely alone. The only human contact I'd have was with family members, people I worked with or shared a home with, or whatnot, and nobody who I'd call a "friend". Nobody. I'd stare at walls and talk out loud to myself, and sit at computer screens and write emails because I had no one to talk to, no one who was there for me. Not one person. Zero people.

So now, there were 46 people who showed up, and I know almost all of them (I don't really know the musicians from my non-church church). There are even people who didn't make it who I'd call friends! So if you add that up - my life has made a remarkable turn-around. I am not totally alone on this planet anymore. Those days are in the past. I'd like to say it's because the planet is just full of nice people who always reach out to me, because to some extent there are people who have made an effort to reach out, but really, the reason I have these people in my life is because I worked on my life.

It takes work. I believe strongly in the power of medication, but I can also tell you with no uncertainty that medication alone does not solve the problems of mental illness. Medication alone is not enough, and never will be enough. If you have Schizoaffective Disorder, or any other serious and persistent mental illness, maybe even any kind of mental illness, you really need a therapist, maybe a case manager, and you also need to work on yourself and the ways you manage your daily life. I think I need NAMI (National Alliance on Mental Illness), too. I think I need the other places these friends came from too. They come from places I've gone to specifically because I did not want to spend the rest of my life in isolation. I went to NAMI because of this in 2007. I went to the National Organization for Women for this in 2009 or maybe a bit earlier. I got on the board of directors for the state of Florida for NOW in 2009, and I started doing volunteer work for NAMI in 2008. I went to my non-church church as a visitor a few times starting around 2008, but didn't officially attend on a regular basis until this past August. That's just six months ago. So even in six months things have changed dramatically. I have to say I have put major effort into this change. I'm not saying that because I'm trying to make myself sound better. I'm saying that because it's just true. I also had people at my party from work, where I've been since 2008, and my best friends who I've known from when we lived in a group home together, which was in 2005. What happened in 2005 is that I got diagnosed and put on medication, and I got a fantastic, irreplaceable case manager who changed my life and stayed in my life as my case manager for seven long years. Those things meant a lot.

I want to tell you these things, because I want you to know that if you are alone, and if you are suffering, you are not alone, and you will not always suffer, because you have the ability to get help and get better. You absolutely have to have one critical element to survive an illness like Schizophrenia or Schizoaffective Disorder, and it doesn't come in a bottle or an office. It comes from within. It's called HOPE. You absolutely have to have hope. No matter what happens in your brain, no matter what traumatic experiences you go through (I've been through countless ones), no matter where you live or if you're homeless, no matter if you're assaulted or abused, no matter if you feel like killing yourself, no matter if the voices and visual hallucinations assault your mind and drive you to want to do horrible things to yourself, no matter if the delusions and paranoia terrify you every single day for years, no matte WHAT. You absolutely have to remember that there is hope.

I'm not saying people will "recover". I read a good article recently by someone who said she didn't like the term "recovery"; she just liked the term "hope". And there are valid reasons for someone to make that argument, because not everybody does "get better". I'm not "all better". I'm improved, but I still have symptoms. I started getting overtired and overworked lately and I've been having some mild paranoia and hearing some of the "doublespeak" that used to plague me on a daily basis. This causes anxiety because of the dreadful thought, "I'm going back downhill again after I've been doing so well!" But I'm not going "back downhill". I'm just having some perceptual problems, and they are there, but I can deal with them. I can do reality checking with myself, talk myself out of the paranoid thoughts, and I can keep doing what I'm doing. I'm working, going to school, going to doctors' offices, going to therapy, going to a chiropractor, going to church, doing research and writing and reading (and my mind is actually working well enough to do these things well!), and walking for exercise three times a week or at least as much as I can, and taking care of my cats, and basically, well, living. It's a lot to take on, and maybe that's why my brain is acting up, because maybe I'm doing too much. That's what therapy is for. With a good therapist you can get assistance in monitoring yourself and get reminders of what those coping skills you have in your mental toolbox can do for you.

Today, I have hope. I have friends, and a decent life too. I have my family that actually speaks to me and doesn't all hate me or ostracize me......I have more than myself. Life really kind of requires having more than yourself.

My oldest friend who is not an internet friend is a former professor of mine I met about 19 years ago when I took my first college writing class. Actually it was my only college writing class. He convinced me I was intelligent. That was no small task. To this day he'll remind me I'm intelligent when I need to hear it. We mostly corresponded via email over the years as I ran around the country, going from hospital to homeless shelter, to hospital, to assisted living facility, to rented room, to hospital to group home, etc., etc., etc. for years. And he was at my birthday party. It was his daughter, who was not born when I met him, who played the cello. It meant a lot for that family to be there. He said, when he was leaving, "I'm really glad you made it to forty, because there were many times when I really did not think you would." And I said, "Me too."

I'm really glad I made it to forty. Hopefully, I'll make it to 87 like my grandmother who's still alive. That would be cool.

A month ago, at a NAMI meeting, two women were talking about the horrible, hopeless situations of their daughters. I went up to them. I said, "there are great support groups and Family to Family classes NAMI offers, you could attend". They looked incredulous. One of them said to me, "Do you even know anyone with a real mental illness?". I said, "Yes, actually. I have Schizoaffective Disorder." They looked shocked. "But, how can you stand here talking to us like there's nothing wrong??!!". I said, "I'm on medication. I'm in therapy. I've gotten treatment." I told them I was on the NAMI Board of Directors. They asked me if I was able to work. I said, yes, I've been working since 2006. I said, I'm in college and about to graduate later this year with a bachelor's degree. I told them, "things can get better". After we talked for a minute, they both thanked me. One of them said, "You've just given us more hope than anyone else ever has in all these years". Both of their daughters were about my age and both of them had Schizoaffective Disorder or Schizophrenia. Both lacked insight into their illnesses because they weren't getting the help they needed. I did not change that. I just shared that things can improve. Then, there was a third woman who told me her daughter was traveling around the country, psychotic, and she didn't know what to do. So I talked to her for a minute. After I left, I was glad I went to that meeting, because when you can offer a sliver of hope to someone who is feeling really hopeless, it really makes you feel like something as simple as going to a meeting was worthwhile.

So if you are feeling hopeless, don't give up.


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