Wednesday, September 28, 2011

More thoughts on homelessness, and personal experience

Last night I wrote the previous post about my apartment building being turned into a transitional housing facility for homeless men. I realize that, in that post, it may have sounded like I didn't understand or didn't care what it is like to be homeless. And I want to correct that. I do not know what it is like to live in the streets. I did live in my car in 1999 for a couple weeks, but I never lived actually on a street. However, I know very well what it is like to be in homeless shelters for months (or until they kick you out), and in substandard housing in such places as motel rooms or couches. Plus, even when I wasn't homeless, I was barely keeping a roof over my head. For three years, I lived in a rented room in a condo where I rarely left that room.

The reason I'm bringing this up today is not because I talked about the homeless men moving in here in my last post. It's because today, in a college class, we watched a video about homelessness. It was interesting, and it was a documentary about people in a city where I was once homeless myself briefly, not far from where I live now. I didn't realize, however, that it had profoundly affected me watching that video in that classroom until after I was in my car, driving away from the university, crying. I couldn't stop crying for some time. I was also talking out loud, which I do sometimes, because I'm not - as you might have noticed by now - completely "normal" (whatever that is) mentally, and so I still do some odd things now and then. I had to talk about this video and how it affected me, so I talked out loud to no one, and I talked briefly to my case manager about it, even called a couple of other people and might have talked to them about it if they were available.

It affected me for a few reasons. One reason is, I try not to think a lot about what it was like to be psychotic and wandering the streets, sleeping in a shelter at night. I don't focus on it. I don't spend a lot of time remembering it. I don't tell a lot of people about it. But it happened, and I never forgot it happened. Another reason is that I had to watch this video about this issue in a classroom full of people who have, mostly, never been homeless, and who might gain some more awareness about mental illness and homelessness if I could personally tell them what it is like, but I can't do that. Another reason is, yeah, I can't do that.

It's weird to be in a situation where you are not safe to talk about major aspects of your life, but it happens frequently to me. I do not talk about mental illness at my workplace, because I was not treated well when I did mention it at my previous work place (after having to mention it because I had to be hospitalized for a few days), three and a half years ago. I do not talk about it with people at college, except for people in the office for students with disabilities and, occasionally, a professor (but not often). I do not talk about it with most of the women I know through the women's rights organization I'm involved in, although there have been times I have mentioned it to them, and with one person there who is a former therapist I have talked about it several times in some detail. So, often, I never talk about it. Even with my family, who know about it, I don't talk about it all that much.

So, this is a big contrast to the times when I do talk about in detail during public speaking engagements or when I'm in a conversation with someone from NAMI or when I'm writing here on this blog. It's weird to be silent about a major aspect of your life, and pretend like it doesn't exist. It's aggravating. I don't like having to pretend like it doesn't exist. I want to create awareness and shed a light on mental illness, and on homelessness, because people don't talk about these issues enough. And, more than that, I want a witness. Everybody who goes through a major challenge in life and barely survives it usually wants the basic acknowledgement that it happened. To pretend like it never happened is to be silenced, and being silenced is stifling.

When you survive cancer, or when you survive serving your country in a war, or when you survive a car accident, you are generally recognized by people as a survivor of that thing. They might say, you're in remission, or you might have a title to put with your name such as "veteran", or you might be praised for your ability to walk again after serious injury. But when you survive serious mental illness, even if you recover enough that you are well aware you survived it and what you went through, you don't get recognition at all. Because people don't understand mental illness. And people pretend like mental illness doesn't even happen to "someone like them". And people think that they can tell by looking at a person if she has a mental illness, particularly a "serious" one. And people don't want to know anything about the realities of mental illness because it's easier just to make snide comments and stupid jokes about craziness and never educate yourself on what it's like to really be psychotic for years. Because people think it could never happen to someone like them, or someone in their family, or someone they sit next to at work, or someone they sit next to in a class at a university, or someone they are talking to in the dentist's office.

So, people with mental illnesses get ignored, and, I think, people with serious mental illnesses - by which I mean ones that include psychosis - get ignored even more, and, I think, people who are homeless due to a mental illness get ignored even more than that, and, I think, people with serious mental illnesses who are homeless and who are undiagnosed or untreated or both REALLY get ignored.......and that sucks. I don't know exactly how many people with psychosis are sleeping on the streets of the United States, but I know there are a lot of them, and I know something else, I could very easily be one of them myself. So it's hard to sit in a classroom and act like I'm objectively learning about this subject. This subject could be me. This subject used to be. This subject, in some ways, still is me. So sitting there, afraid to call attention to my illness and my "abnormality", afraid to be seen as crazy or a freak, afraid to be viewed as abnormal or to be shunned, afraid to be looked down on or talked about, afraid.......I am silenced. Silenced by ignorance and a lack of awareness that is so pervasive it is common amongst the most educated people in society. The silence that enshrouds mental illness serves to keep us all down, downtrodden, down at the bottom of the societal consciousness, down, down, down. Way down.

So, I pointed out to my class that the young man in the film with Bipolar Disorder who was not on medication was an example of the many, many people who are homeless who have mental illnesses, including many who are undiagnosed. And I hoped that they cared. I listened to them discussing homelessness as if it was this subject that didn't affect "someone like them", and wouldn't or couldn't touch them, but was something that it was interesting to learn about in a classroom (with the one exception of the brave young woman who said she was homeless as a teenager and slept on friends' couches for a while). And then, I left, and I went to the parking garage, and I got in my car, and I drove away, and I cried. It sucks to be silenced. It sucks to not have a witness. It sucks that you don't get called a survivor when you survive something nobody knows anything about.

I wanted to talk about this because it deeply affected me, and I realize this is rather ironic considering that I also just posted last night about how pissed off I am that people are going to be moved from streets into my apartment building and will now be my neighbors. I'm not proud that I don't want to live with a group of men who are coming from the streets. I know it is not a very nice thing to say. So I wanted to clarify that and make sure you understand that I do care about people living on the streets, that I do know what it is like to not know where you're going to be sleeping at night or not have a key to a door that is yours, and I do want to help homeless people, create awareness about homelessness, and see the problem addressed. At the same time, I guess part of the reason I am bothered about my apartment building becoming a transitional housing facility is that I have fought really damn hard for years, and gone through a ton of treatment, to get to the point that I don't worry regularly that I'm going to end up in a shelter again. And now I'm going to be living in a place that will be akin to a shelter. So it's as if, after all this effort, going to work regularly and college and paying tons of money in tuition and paying my rent on time every month, and addressing my mental illness with my full attention by going to therapy and talking to my case manager and taking daily medications for years plus bi-weekly injections, after all that, I haven't "moved up" in the world much. I resent the agency that owns this building for this reason. I have worked hard, have been given treatment that luckily helped me, and have improved my life situation a great deal. So I don't really want to go back to living in a homelessness center. I want to be past that. I want that to be behind me. I want to be able to live just like somebody who doesn't have a mental illness, in a comfortable, and safe apartment building. I don't think that I'm wrong for wanting this, and I don't think it is an odd thing to want. I think most people would want this. So that is why I wrote the post that I wrote last night. I never lived on the streets, but I did live without a home, and I do know how horrible homelessness is. I don't want it to seem like I am unaware of the status of homeless veterans living on the streets, rejected, ignored, and discarded by society after they served their country. I do care about them. I just want to be able to live in a place where I am comfortable and safe, especially when I am paying $500 a month to live there.

In my class, where we watched the homelessness video today, we are writing papers about how each class affected us. They're called 'reflection papers'. They are supposed to include one paragraph about each class. I wonder how the heck I am supposed to fit this topic into one paragraph??? "Gee, this film kind of reminded me of the lousy food in one of the shelters I lived in when I was psychotic for six years pretty much around the clock...It's kind of a long story."?

I almost ended this post without ever getting to the actual experiences I had with homelessness, so I will briefly mention them. I have written about them before, but it has been a long time. I became psychotic in 1999, and instead of going to Smith College, I ended up in a homeless shelter in Maryland, because I became estranged from my family with nowhere to go, no job, and no money, partly due to being physically sick, and partly due to being really delusional. I got kicked out of that shelter when my time ran out, because most homeless shelters have time limits for how long you can stay in them, and because nobody there did anything to help me find another place to go. So, where I went was the backseat of my blue Kia. I slept there until my friend from the internet who lived in Virginia, sent me an email and said, "There is $100 for you at Western Union. Go get it and drive to Alexandria where there is an empty room for you in my old condo." I stayed in that room three years. Until I got kicked out.

After that, and more psychotic than I had been in 1999, around 2002, I went to live in a rented room which didn't work out because the owner of the home tried to rape me, or, at least, I thought he was about to rape me, so I was then put into a domestic violence shelter since he had a documented history of violence against women that I didn't ever get the details about. After my time ran out at the domestic violence shelter, still really psychotic and totally undiagosed, with nobody helping me find another place to go and me being unable to secure a place due to bad credit and the general inability to know what reality was, I ended up in motels for a while. After that, in between hospital stays, I was in a rented room at another place that was located for me by a social worker who worked for the city. After that, in between hospital stays, I was in my mom's house in Florida. Then, at one point, when she couldn't deal with my abnormal behaviors, and she couldn't get the police to do anything to "help" me (she said, "SHE NEEDS HELP!!" as I recall, more than once), she pretty much dumped me at a homeless shelter downtown in the city that I watched the documentary about today. After that, I was in a motel again, or perhaps before that, I'm not quite sure, but only for a little while. Then I was in between my mom's house, hospitals, shack-like apartments, and one Assisted Living Facility where I lived briefly until they figured out that I didn't have Medicaid or Medicare coverage to live there like the hospital had thought I had. Then, the next time I was hospitalized, I was diagnosed. Somewhat correctly (Schizophrenia, which was later changed to Schizoaffective). Then I was hospitalized for five months. After that, I was put into a group home for ten months. Then I moved into the building where I live now, and that was in 2006. So that is a brief overview of my inability to keep a roof over my head some of the time for six years. That is also the story of how life was before I got the first long-term apartment I ever lived in, which was the one here that I moved into five years ago. I think now you can maybe understand why it's important to me to maintain some stability, and why I kind of enjoyed having this apartment be my long-term home place, even though it is a high-crime neighborhood. I just really enjoy not constantly moving from one place to the next, with no real plans, and no ability to make any. I have been in this apartment (the renovated one in the same building as the one I moved into in 2006) since April 1, 2011. I do not want to be forced to move again. That's pretty much the end of the story for now.

Edited to Add: On a related note, over at Define Functioning, Backward E had put up a post a while ago asking what people want other people to know about mental illness, and she is getting these contributions made into a book. It will be a very real book, and if you would like to contribute something towards this effort, go here, and help create some awareness and educate the world!

Why should housing for people with mental illnesses be substandard thanks to nightmarish mental health agency landlord?

I am sick of this drama with my apartment building. I have written about this before. The building is owned by a community mental health agency that is the only agency that is in my county which provides housing specifically for people with psychiatric illnesses. I have lived here for five years. I pay $500 a month for this one-bedroom apartment, which is a reasonable price although the neighborhood is filled with crime and is completely crappy at this point. But, it's not more than 20 minutes from my job, 50 minutes from my university, and close enough to my family. It's home to me. I have gotten used to living in this building.

About a year ago, they started doing construction on the building. The owner, which is that mental health agency, never told any of the tenants, at that time what the construction was for. It was curious because for three years the majority of the apartments in the building had been left completely vacant. This happened after the "jail diversion" program was removed from our building which had brought people from jail, who had mental illnesses, to live here temporarily and never worked out since the majority of these people were on drugs, were prostituting, and were bringing home their druggie friends, rather than getting jobs or doing anything at all productive with their lives. Therefore, they were all eventually evicted. When they lived here, the police were a regular presence because of all the crime that was going on. It was not uncommon to see those familiar flashing lights outside my living room window. But I lived with my boyfriend then, a big guy who I felt protected me somewhat. I wasn't that scared to live here.

While they were doing construction, and the jail diversion folks were gone, there were three apartments occupied by other women, one by me, and one by a very harmless, nice man. I didn't mind living here then. Eventually, the situation turned into a nightmare when, this past spring, we were all abruptly told that we had to move out, or if I was going to stay I would have to move into another apartment - in the same building, one that was renovated. I had a basic breakdown at that time. I didn't want to move at all. I wanted to stay where I lived. I didn't have any desire to pack up all my belongings to move into another apartment in the same building. I didn't want to stay here if there was going to be a bad situation when the new people moved in, but all I knew about those people was that they would be veterans.

The agency that owns the building contracted out with the Veterans' Administration to rent the other apartments in the building to vets, we were told. At first, I was also told that I would no longer have a yearly lease, but after some complaining and help from someone who advocated for me at the agency, I got a yearly lease to move into the renovated apartment. I went through the tremendous hassle of moving, and eventually unpacked, and got settled.

During all this time, all this past year, the agency that owns the building, a mental health agency, mind you, never bothered to tell the tenants what was really going on. The woman who lives below me is agoraphobic and rarely leaves her home. She is 63 years old but acts like she is 103 and barely cares for herself. She needs to be in an ALF, but the agency pays no attention to this, so I visit her on a regular basis to check on her. This woman and I, for the past five months, have been the only people living in this building. She has lived here for twelve years, and she refused to leave her apartment, so they let her stay in it.

The renovations were completed. Still, no news from the agency on who would be moving in or when. One day I met a man outside who told me he was a mental health counselor, who would be the new "manager' here. We never had a manager before. Then they put up security cameras, and trespassing warning signs. I started to wonder about what was about to occur.

Tonight I found out what's about to occur. They have turned my apartment building, where I have made myself a home for five years, into a transitional housing facility for homeless veterans, some of whom are coming directly off the streets to live here. Directly off the streets. I have nothing against homeless people. I have written here about how I was homeless myself and lived in shelters twice, when I was psychotic. But these people are coming from the streets. Some are coming from shelters, and some are also coming from a facility at the VA. They are all going to be men. All of them. So they are filling up 13 beds with men, and leaving Mary and I as the only women to be living in this situation. Then, I found out that the men are only living here for six month periods. So that means, we will have people coming and going, moving in and out again, much like with the jail diversion program. It won't be a permanent home for any of these people. So I will not be living in a regular apartment building anymore. It will be a place for transients.

I am not happy about this. I am also not happy that the woman who told me this, who will be on staff at the building part-time, told me not to let anybody know what she had told me because she wasn't supposed to tell me, but she thought that I should know about it. In other words, the agency has purposely kept these facts about where I live, from me, even though I have paid them rent on time monthly for five years and never caused them any problems, and also, I have a lease. My lease doesn't end until April. And so, when they told me I had a choice about leaving (which wasn't an option since I couldn't possibly find a place to go fast enough) back in March, or staying here, they failed to give me the facts about WHY I MIGHT WANT TO MOVE OUT.

As a woman, who is a survivor of sexual assault, I do not want to live in a building with 13 men who have PTSD and have just come off the streets and may be drug dealers or drug addicts or criminals of any variety, and will now be able to sit outside and watch me come and go at night, in the dark, where I will have NOBODY to protect me or help me if they do anything to me. I am not happy about this.

Mary is no help. She simply never goes anywhere. She goes out maybe once a week with her mother to get food. I offer to take her places, but it never ends up happening. She doesn't complain or contact anyone about anything. For example, when her apartment was flooded by toilet water because her toilet overflowed, she waited until two-three inches of water covered her entire apartment before she called anybody to help her. When the fire alarm went off a week ago, she didn't even go outside to see if there was an actual fire. I went and knocked on her door to tell her we needed to call the fire department. She told me she didn't think that was necessary, whilst the blaring of the alarm filled, not only our building, but the entire street. The fire department came and the officers told me I did the right thing by calling them. After all, it was a fire alarm. In other words, Mary is not going to be someone who calls 911 for me if she thinks I might be in trouble. Also, from inside her apartment she can't see me come and go from the parking lot in the first place.

This woman who will be working here told me that the person who will be "on staff" at night will be one of the homeless vets who lives here and "whoever seems like the best one of the bunch" to take charge at night. She then asked me to keep an eye ON HIM in case he is a trouble maker himself, and then I can let her know this. "But I'm not asking you to be a policeman or anything." She mentioned that they would call 911 if there was a problem because they're not going to "break up fights or anything like that". These people moving in will also have no jobs, and who knows what they will be doing all day. That is a recipe for disaster, in my opinion.

I do not feel safe in this situation. I deserve to feel safe in my own home, where I pay rent to live.

Why should people who happen to have a mental illness be treated like we are garbage and we can just be made to live in a transitional facility for homeless people rather than apartment building and not complain about it?? Why am I being lumped in with the people who have nowhere to go who don't even have to have a mental illness to move in here?? Everybody who has ever lived here was required to have a mental illness to live here. Now they just have to be homeless veterans.

I am sorry that there are so many homeless veterans. I am sorry that there are homeless people at all. I know what it was like to be homeless myself, however briefly it was. I feel for them. But I do not want to live in a transitional facility for homeless men. And, yes, she told me that every single one of them is going to be male. Because the facility "wouldn't make money if all the beds weren't filled". And they can't find enough homeless female vets to fill enough beds. So they are focusing solely on men.

This makes me very uncomfortable as a woman, and as a survivor, and as a feminist it pisses me off. Mary doesn't even know any of this is happening! I will have to be the one to inform her since the agency that owns this building has intentionally never informed us ABOUT ANYTHING.

Why do they get to treat us this way? As if we have no rights as tenants? As if we are subhuman and don't deserve respect? As if we shouldn't care where we live or who lives next door and downstairs and across from us. As if we shouldn't care ABOUT OUR BASIC SAFETY??

This really pisses me off.

I am not saying that there is anything bad about a person because he's homeless, living on the streets, and is a veteran. I am saying, from EXPERIENCE, that a transitional facility for people with nothing to do all day but get into trouble turns into a disaster, which is why they ended the jail diversion program here years ago. I am also saying that, however much I care about homelessness, and want to help end it, and want to be a social worker and help people who are in situations like that, I still feel that I have the right to feel safe where I LIVE and that I have the right TO KNOW what is going on WHERE I LIVE. Because, however much you may care about homelessness, I challenge you to say that you would actually feel comfortable living in a situation like this, as a single woman, alone, with no one there to look out for her safety at night. I don't think most women would feel comfortable in this situation. And I don't think that it is right or fair that, just because I have a psychiatric illness, I am expected to NOT CARE about this situation, and NOT CARE that I was never told what was going on, even though I PAY THE SAME RENT THAT SOMEONE WITHOUT A MENTAL ILLNESS WOULD BE PAYING. That is not right. That is injustice.

I should have been informed, and I should have been given a choice about whether I want to live in this kind of environment. But I was never given that choice, and neither was Mary, because we were never informed. Now I have a lease to live here until April, and I have nowhere else to go. I have no time to find another place to go. So I am not happy about this situation at all.

Friday, September 16, 2011

Invisible Illness Awareness Week: 30 Things I Want People to Know

Hey, everybody! It's Invisible Illness Awareness Week. This goes on each year. I encourage you to download this meme, and participate with your blogs.

1. The illness I live with is: I live with Sjogren's Syndrome, Fibromyalgia, associated conditions to those such as hypothyroidism, peripheral neuropathy, a vestibular disorder, arthritis, etc. I also have prediabetes which is related to medications I have to take for my psychiatric invisible illness, Schizoaffective Disorder, the one that has most impacted my life.

2. I was diagnosed with it in the year: In 1996 I was told I had Fibromyalgia and Chronic Fatigue Syndrome. In 1999 it was Dysautonomia, and one doctor said "Sjogren's Syndrome". It's so fun getting diagnosed with an autoimmune disease, as they test you for everything under the sun.
In 2005 I was finally diagnosed with the Schizoaffective Disorder, after several years of constant psychosis. That diagnosis saved my life.

3. But I had symptoms since: since I was 14 (1989) I had depression, and some physical symptoms started when I was 19 (1994).

4. The biggest adjustment I’ve had to make is: Wow. I have had to adjust everything. I had to leave college for years because I was both physically and mentally sick and could not continue with that. I could not work for years, physically or mentally. I now have gone back to college part time, and have been doing that for almost five years. I now work part time, and have been doing that for five years. I had to go on disability benefits when I was in my early 20's.

5. Most people assume: That I'm perfectly healthy. But that I take a lot of time off work for doctors appointments and they probably wonder why that is. Or, if I tell them anything about my illnesses, the physical ones make them think I'm a hypochondriac, and the psychiatric one makes them think I'm an abnormal freak. Which is why I am careful about who I tell, and what I tell them. That said, when I do public speaking and advocacy work, people tell me I'm strong, and resilient, and surprisingly capable.

6. The hardest part about mornings are: Waking up; I have terrible insomnia which is a major problem that affects many parts of my life and worsens all my health problems

7. My favorite medical TV show is: Grey's Anatomy. I know it's not always accurate, and it's fluff, but I like the writing.

8. A gadget I couldn’t live without is: My medications. They saved my life. And my computer, which, at my sickest, was my only connection to the world.

9. The hardest part about nights are: Trying to get to sleep, which takes hours, and hours and many medications to ever happen.

10. Each day I take __ pills & vitamins. (No comments, please) Right now, 11 plus one injection every two weeks.

11. Regarding alternative treatments I: I have had physical therapy and I had some electrostimulation and massage with that which was very helpful, but I can't afford all the copays that are required with Medicare, and I don't have a lot of free time right now to go to physical therapy. Psychotherapy and case management helped me immensely, for years. I had four years of therapy recently which was very useful.

12. If I had to choose between an invisible illness or visible I would choose: Invisible. I hate the assumptions people make about me not having anything wrong to deal with in my life, and I hate that people are so ignorant about these illnesses and lack awareness, and I hate all the stigma that enshrouds mental illness which is something I do advocacy to combat. But I have to be honest, I would rather not be in a wheelchair, as it instantly makes me people identify you as "disabled" without often giving you the chance to show which you still can do.

13. Regarding working and career: It's very hard. I have a hard time working just 25 hours a week. I cannot make much money because if I get paid too much I'll lose my benefits and my healthcare, which is vital to my survival, and I do not feel capable of working full time yet. I hope to be able to do so in the future, and that hope is what propels me to continue in college, working towards a B.A. degree even though I am 36 years old, and some people think that is silly. I hope to go into the field of social work to help others, because I feel that is what makes life valuable in many ways, and I want to help people with mental illnesses, if I can, because I understand what they are dealing with from the inside out, and I want to make a difference in their lives. I also feel that if I can get a degree and a full time job, I'll finally be viewed as "acceptable" to some of society, and I'll finally feel fully self-sufficient, which in a way, is not right, because I should be able to feel like a perfectly acceptable human being right now, since I'm doing as much as I can do.

14. People would be surprised to know: That I often want to go home and go to bed. I put on a good smile, and I'm generally a pleasant person, I think, but I often get exhausted, stressed, and don't want to have to deal with all of the tasks of daily life, because I am just so tired. I also think most people would surprised about what I've been through from being sick in the past, such as homelessness and utter poverty, living in homeless shelters, a car, and motels. People who know me and don't know I have a mental illness have no idea what I have lived through, all my suicide attempts and my bare survival, and my recovery, which was hard, and definitely worthwhile, and which is still a delicate balance.

15. The hardest thing to accept about my new reality has been: I was going to go to Smith College in 1999. I couldn't do it; I was too sick. I will never be able to do it. I may never be able to get a Master's Degree, as getting a Bachelor's is hard enough and putting me in extreme debt. I may never be able to travel the world, as I may never make enough money to do that or feel up to doing that. I may never get married, because I don't even date since explaining all that I deal with health wise is too much for me to deal with, and I don't want to bother putting myself out there for rejection. My last relationship was the longest relationship I've had, and I went through a painful break-up from that three and a half years ago, but haven't gone on a date since. I will never have children.

16. Something I never thought I could do with my illness that I did was: Getting my Associate's Degree last year, and doing public speaking about my mental illness to people such as groups of police officers in Crisis Intervention Team Training. I was shy all my life, but I have enjoyed telling my story to educate people  and explain what it's like to be psychotic.

17. The commercials about my illness: There are some SAMHSA commercials about mental illness; I think they're stupid and don't explain much of anything. There are no commercials for Sjogren's. But there have been some tv programs covering it since Venus Williams came out with the fact that she has it. The only ones there are for Fibromyalgia are drug company commercials, but at least that means people are admitting it's a real illness now. Years ago, nobody had heard of Fibromyalgia.

18. Something I really miss doing since I was diagnosed is: I miss being a kid and being healthy. I miss being a person with a lot of potential as a child, and planning on going to college and having a great career. I miss those dreams. I have different dreams and goals now than I did then.

19. It was really hard to have to give up: Drinking tons of Diet Coke that I thought was keeping me going but was really unhealthy for me. Sometimes, I still drink it but not like before when I was heavily addicted for years. I also miss being thin, and feeling attractive physically. The medications I take for Schizoaffective Disorder, in addition to my health conditions, have led me to gain 100 pounds in just a couple years. It has been really damaging to my self-esteem, and it has made me prediabetic. Also, it has been hard to give up being able to run around and do things, and stay up all night, without needing much sleep, though it has been many years since I have been able to do that.

20. A new hobby I have taken up since my diagnosis is: Blogging! I love this blog, and it has given me a place to talk about my life with mental illness for the past six years. It has been a wonderful place of solace and support for me, which I really needed and still need. And it has given me a place to use my voice and tell my story. Also, public speaking! I am an advocate with the National Alliance on Mental Illness now, and I have been for a few years.

21. If I could have one day of feeling normal again I would: I don't think I'm "abnormal". I think I have challenges, and everybody else has their own challenges. I don't know what it what mean to feel "normal". Most of my life, I've had these challenges. I have learned to deal with them. Though, it would be fun to go running once. I've never been able to do that.

22. My illness has taught me: That I know more about my body than some doctors and that I must listen to it, and pay attention to the signs that it gives me. It has taught me that I need to rest, whether I want to or not. It has taught me to adjust all aspects of my life. I do a desk job. I can't do a job where you stand on your feet all day. It has taught me that people with disabilities are regular people, and often very resilient people, and that people with mental illnesses are incredibly stigmatized to this day. It has taught me to speak UP.

23. Want to know a secret? One thing people say that gets under my skin is: "You don't look sick".

24. But I love it when people: Listen to my story or ask me questions. I love it when I do public speaking and people pay attention and get interested in learning about mental illness. I love it when people read my blog and take interest in it. I love it when I connect with other people who live with illnesses.

25. My favorite motto, scripture, quote that gets me through tough times is: "Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed it is the only thing that ever has." -Margaret Mead
"Your silence will not protect you." -Audre Lorde

26. When someone is diagnosed I’d like to tell them: It gets better. Recovery is possible, treatment is available, life is livable, it's not the end of the world. Happiness and feeling competent and having successes is possible too. I think particularly people with mental illnesses lose hope of those things, but those things are very possible. I also think you have to take control of your own recovery, and be your own best advocate, and do what it takes to get the help that you need, or your life will not be one you enjoy. It's not fun, and it's often a hassle, but if you don't get treatment, you may never be able to do the things you could do if you did.
27. Something that has surprised me about living with an illness is: That I have managed to adjust my entire life to accommodate these challenges, and now, it's okay. I have bad days, and I have a lot of fatigue, and I sometimes even have psychosis (mildly), but I live my life, and generally, I am able to do enough to be functional, and sometimes happy. I didn't think that would ever happen in the past.

28. The nicest thing someone did for me when I wasn’t feeling well was: My case manager, when I was in severe depression, would come over to my house, and literally pick up trash and throw it out with me, so I could clean up the terrible, overwhelming mess that I had allowed to accumulate because I had given up on it. She has been there for me and has said so many times that I'm doing great, and that I'm surprisingly able to accomplish more than people would think I could with my mental illness, and she has really boosted my self esteem and been a general life line for me for six years.

29. I’m involved with Invisible Illness Week because: Invisible Illness has affected all aspects of my life, just as it has affected millions of other people who feel silenced by their lack of visibility, and so much ignorance exists about these illnesses that we need all the awareness campaigns we can get!

30. The fact that you read this list makes me feel: Hopeful, and appreciative.

I encourage you to read Jennifer Pettit's 30 things too, and to write your own on your blog!

Saturday, September 10, 2011

I walked through the locked door. I came full circle. I turned my life around. And I can be of use. It feels good.

Today I entered a place I hadn't been inside in six years. I am taking a social work class that requires we do an internship. And I decided that I would look into doing mine at a mental health treatment center, one where I happened to have been a patient long ago. My reason for wanting to do it there was to see if I was really interested in working in mental health, and get a better understanding of what that would be like. What I did not anticipate was the profound sense of empowerment, the feelings of gratitude, and the pivotal change this experience would make in my life. And that happened for me the first day.

You see, I was a patient for a long time. For years of my life, I was in and out, and in and out of hospital, after hospital, after hospital. And that was my life. I was barely able to keep a roof over my head and rarely fed myself enough. I was so profoundly ill that my entire life was lived in an unreal world created by my mind. I was not here at all. I was somewhere else. And today, you see, I am here. I remember once, in a hospital when they gave me a hearing with a judge to determine how long I would be forced to stay there, in New Jersey, I stated, "It feels like Alice in Wonderland in here", and indeed, it did. Now it feels like I have closed that book. Sure, it may be less exciting here, in the real world, outside of Wonderland. There is no Cheshire Cat, no rabbits, no queen, no Humpty Dumpty, nothing wild and crazy happening at all. It is different here. Today, outside of Wonderland, however, I have some things that I value. I have peace. I have, however cliche it may sound, serenity. I have relief from pain and suffering and confusion and madness. I have calmness. I have happiness. I have reality. And I have hope. I also have a roof over my head, food in my stomach three times a day, medications that keep me here in reality, and a life. I get up, brush my teeth, get dressed, eat breakfast, go to work or school, (and now my internship), drive my car that I bought with my money, and go to movies with a friend sometimes, or  family member who I am no longer estranged from. I have a regular life today. I closed the book on Wonderland. I am glad for that.

So I walked through a hospital unit, where once I was a patient aimlessly wandering around in pajamas, raging at the staff for keeping me so unjustly locked up in there (as I thought), or crying and screaming hysterically at all the torment that I was experiencing from my brain. I walked through there and I remembered the days coloring coloring books, because there was nothing else to do, and the roommate I had named Prudence who talked endlessly because she was manic and also brilliant but who couldn't contain her anger at being locked up and repeatedly ended up in the seclusion room. I remembered those days, and the days lining up to go outside into the locked courtyard with the high fence, for some much valued fresh air while everybody smoked cheap cigarettes around me. I remembered Mary, who had sex with another patient and who introduced herself to me by saying, "Hi, I'm God", which was very confusing because I myself was Jesus. I remembered the day they cut off all her hair because she had lice. And today, I walked through that unit as an intern, as a professional, as a person who had officially crossed over to the other side of the system, and who could be trusted to be amongst staff, not patients. A person who is stable, in control of her own life and her own mind, and in reality. I am that person now, and that's a wonderful thing because if you don't have control over your life and your mind, and you don't have reality, then really, you have nothing. You have no life to speak of.

So today, I felt empowered. And I felt grateful as I learned about the patients there, and the lack of support they have, the lack of a place to go, the lack of hope they have. I am a lucky one. I got out, got better, got to return to work, to college, to a home, to a life. Not everybody is that lucky. I also think it's vitally important that we all remember that people can, and do, improve, and get better, because there is hope, and we must have hope because as Pearl Buck once wrote, bread without hope is meaningless. I think that it is important for the mental health profession to allow people in who are former "patients" and who have been on that side of the desk, because we are the living proof that improvement can happen, and because it is not our fault that we were given these illnesses, so these illnesses should not define our entire lives. Schizoaffective Disorder does not define my life.

Repeat after me: My mental illness does not define my life. It does not encompass all of who I am. It does not define my future. It does not define me. It does not define my life. I have hope.

Today, I got to walk in and out of locked offices and rooms, and I got to read someone's chart and learn his case, and I got to see the inner workings of a facility where they treat people with the illness that I have and other similar illnesses, some of whom are worse off than I ever was, and some of whom are similar to how I was. And I got to think of myself, for a moment, as a potential, possible professional in that field, helping those people. I've never seen any of my own charts. But I got to read a chart today. I was trusted, and I was allowed. (And of course I signed confidentiality agreements and would never share that information with anyone or discuss my own mental illness with anyone who is a client there). Because I am a competent human being, and a college student in a social work class and an intern. I am no longer a hospital patient. I have come a long way. And for that, I am profoundly grateful.

This is more than just a college assignment for me. It is a life changing event. It is a chance to experience what it would be like to do the kind of work I think I might like to do. It is a chance to really feel fully like I am competent. It is a chance to learn and to use the empathy that I have to help others. And if I could have a career helping others, using knowledge and skills that I have gained from experience and not just from college, well that would be a meaningful thing to do. It wouldn't pay much money, and it would be difficult and stressful. But it would surely be a meaningful thing to do with my life. And I want a life with meaning.

Thank you, cosmos, for today. And yeah, thank you Risperdal Consta and Wellbutrin and Klonopin and Vistaril too. You helped me get this day.