Saturday, August 04, 2012


The other day I was in the grocery store, and I saw a man. A man like me, only more obvious about it. He was wearing huge, blue headphones, like the kind people wear when they work at an airport. His shirt and pants were dirty, and so was he. He looked a little bit off. I thought, "Oh, he's hearing voices". I thought about watching him to see if I had been right in this assumption, but then I got busy trying to get the stuff I went to the store to get. See, I understand about wearing headphones to to grocery store. I understand about having auditory hallucinations in the grocery store. These are things I've done. These are things that have happened to me. When I got to the front of the store, the cashier was yelling to her coworker, "I told you not to come over here because that guy that was in my line was crazy!" She said, "He was getting angry at us (herself and the bagger person in the checkout line), and he was throwing stuff into bags like a crazy person! My god, I was scared. I just saved your life by telling you not to come over here!" The bagger person added, "Yeah, that was scary and really weird!"

I couldn't help myself. "Are you talking about the man with the headphones on his head?" I asked. "Yes! Did you see him?! He was really crazy!" the cashier said. Hmmm. I said, "Well sometimes people are wearing headphones like that or they put things in their ears, because they're hearing voices with Schizophrenia, and they're trying to block out the sound."
The cashier said, "That's so weird!" I said, "Actually, it's kind of sad." The look on her face changed. She said, "Yeah, it's really sad."
I should have added, "Do I look scary to you in this dress, just coming from work?" because I know that would have made them think. I know they would have been confounded if I added, "I am just like that man". But I didn't. I just let it go.

I understand wearing things on your ears. I do it. I wear my Mp3 player to block out sounds all the time. I understand wearing dirty clothes. I wear unwashed clothes sometimes. I understand not taking a shower. I frequently go a couple of days, maybe more, without showering. I understand that man. I may not look like I understand, but I do. I am in a rough spot right now, and he was the person in the grocery store who I could relate to. I just wish everyone could understand it without having to go through it themselves.

Last week my case manager and I went to the Social Security office to deal with my ongoing drama with them. I gave them hundreds of pieces of paper, gathered from four different doctors' offices and three different pharmacies to prove money I had spent on co-pays and to prove that, indeed, I am, actually, disabled. It's funny how when you don't look sick, people never treat you like you are sick. They might treat you like you're lazy, or weird, or socially unacceptable, but not like you're sick. I had a friend once who was really sick with Chronic Fatigue Immune Dysfunction Syndrome, as I was too at the time, and someone said to her, the familiar, "But you don't look sick." She quickly responded, "Yes, and you don't look stupid, either, but that doesn't mean much." We were friends  through the internet and phone, and when she told me about this on the phone, I loved it and never forgot it. That was ten years ago.

Social Security says I don't look disabled because I have made "too much money" (over $1,000 in a month) in five separate months or something like that over the past seven years. So they are currently investigating to try to say that I am not disabled. I asked the man who is in charge of this, "How can you say I am not disabled?" and he said, "OH NO, we would never say that! We don't prove you're disabled, we just determine if you're making too much money to be on disability." Yes, I said, because you're not a DOCTOR you can't say I'm not disabled, when my DOCTORS say I am.

After we went to the Social Security office last week, my case manager came to my apartment. She has to, as every two months, she's required to do a home visit. I explained my medication isn't working well, my apartment is a disaster, and I don't want to have her come inside it. But she had to. "Oh my", she said when she saw it. But she was not judgmental, just concerned. She helped me pick up trash and throw it out, which is always humiliating, but she has a gentle kindness about her that makes it not so horrifying for someone to be doing this. She said, "I'm going to get you in to see your doctor right away. Your meds obviously aren't working". She then called the mental health center to try to get someone on the phone who could arrange this, but was unable to reach anybody. So she said she had to go back to her office. I waited to hear from her on the phone. I laid on the couch in my overwhelming mess of an apartment. I picked up trash and threw it out. I thought, "I'll never get this clean, and they're going to want to put me in the hospital now." In fact I had said to the case manager, "I just don't want to end up in the hospital".

She called back. She said, "I'm coming back to your apartment." Doomed, I thought. I know she's going to Baker Act me now. I'll be taken by the police. "I'm coming by myself," she said. "The doctor is out today and so is your therapist." I waited. She came back. I cracked open the door, full of paranoid suspicion. "What are you doing here?" She said, "It's just me, let me in". I let her in. She's known me for seven years. She's been in my apartment in all manner of messes and in cleanliness too. She's taken me to the hospital before, when I had command hallucinations telling me to kill myself. That was four and a half years ago, almost five years ago. She met me in the hospital in my worst state when she was assigned my case in 2005. I trust her. But it was true, she wanted to talk to me about whether I should go inpatient. I explained, if I go into the hospital they'll mess up all my meds, and start me on five or ten at once and I won't know which ones work and which ones don't work, because that is what always happens to me in the hospital. I explained, I have my cats here and if my mom came into feed them and saw what a mess my apartment is she might have me evicted. I couldn't let anybody else into this messy place but  my mom. I explained, I'm not suicidal.

So I didn't have to go to the hospital. When I told the case manager how my mom  tells me they're going to Baker Act me if they see my apartment like this, she said, "You can tell your mom that I saw your apartment and I'm not going to Baker Act you." *(the Baker Act is the involuntary commitment law in Florida).

That night I got my friend K. to go to the movies with me and we got some food at a Mexican place by the theater. It was a horrible, violent movie, and I would not have gone to see it if I had known that, so I just closed my eyes through half of it. It's called, Savages, so I guess I should have known.  I looked past my friend at the wall as she talked to me, but I tried to engage in conversation.

And the next day I went to work. When I got home from physical therapy, after work, I found a notice on my door that the mental health agency would be inspecting the apartments in my building the following Tuesday morning at 9:15 AM. This was on Friday evening.

Eviction. That is what came to mind. I've been evicted before for going into the hospital, and I've lost all of my belongings. I've been homeless, living in shelters three times, and in motel rooms and the back of a car other times. That was before diagnosis and medication, but it was still bad enough to terrify me for life of ever being in that position again. I like my things, and I have a lot of stuff in my apartment. I knew if I went into the hospital and got evicted, I'd lose all my stuff again. It's really hard to lose all your belongings. I never really got over the times it happened in the past.

So, I tried to motivate myself to tackle this giant mess alone, and I couldn't figure out where to start. I sat, confused, looking around. Then I picked up the phone. I called my friend K. and my sister J. and asked them to motivate me by calling to check whether I had cleaned certain parts of the place. I called my mom. I knew she'd berate me, which she did, but she also said she would help. So she came to the rescue, and we picked up all the trash and threw it out. I picked up all the clothes off the floor and organized them into dirty and clean piles in bins. We did the dishes, which involved me throwing out most of the dishes that were in the sink and washing what could be salvaged. I mopped the kitchen and the bathroom. I cleaned the bathroom well. The next day my mom rented a Rug Doctor and she came over and carpet cleaned the whole place which we had vacuumed with the new vacuum cleaner I got from my case manager via the mental health center. I was, and still am, in pain, from all this cleaning, but all last weekend we cleaned. I did most of it, but my mom helped a lot. She did tell me that I'm going to get evicted and she won't ever help me again if that happens, should I let the mess get like this again, and pointed out repeatedly that something is "really wrong" with me that I let it get like this at all, but I just ignored her and let her rant while she shampooed the carpets. My mom has a lot more energy than I do and I knew I needed her assistance.

Monday came. The apartment was clean. All clean. Monday I saw my therapist and my psychiatrist. My Latuda was increased to 160 mgs, and my Prozac increased to 60 (again, but this time I'm, not manic at all). Monday night I went and slept in a sleep lab so they could do a sleep study on me that I had been trying to avoid. They figured out that I have obvious insomnia and inability to reach deep sleep, but since I slept for four hours and didn't seem to have sleep apnea, they determined I don't need a machine, or at least that Medicare wouldn't pay for me to have one. So basically nothing was resolved with that.

I went to work every day this week, and was only late once. On Thursday, my day off, I met my friend L. for lunch and then I went to physical therapy, and after that I  treated myself to a dress I really wanted because it was on clearance now, and I had worked hard on my apartment. It feels nice to have a clean space to live in.

Every day at work, I hear the people talking about being Nazis and concentration camps, and how I'm going to "walk home", and I hear them saying that I should die. All day. All the time. I heard someone telling me to speak in German yesterday, which is a throwback to my old delusion that I did speak in German because I had to, to fit into the Illuminati/New World Order/Nazi planet where I believed I lived. The delusion is strong again, and so are the auditory hallucinations. I've also been communicating telepathically with Anderson Cooper and other TV peronalities when I watch television. I don't know if Latuda can make it all go away. But I'm here hoping it does.

Last night after work, I went to physical therapy, and then went and got a manicure, something I've started doing recently to feel better about myself. It kind of helps. Today, I have to go to the laundromat and work on my clothes so they're no longer piled in bins. One step at a time, and I can get through this somehow, stress and all.


  1. Congrats, on getting the house clean. It must be a major relief. Hope you get everything worked out soon.

  2. Another congratulations on getting your place clean! I've had to have my mom help me when it's been really bad before too. I'm sorry you had to deal with those stigmatizing comments. It always makes me really angry when I hear people talk like that.

  3. You are going through so much stress - it isn't a surprise that some of those old voices are bothering you again. But you did a monumental thing by getting your place cleaned up! That's great!

    I have sometimes seen people acting like the "man with the headphones" in places like grocery stores. I am embarrassed that I don't know how to act. Even that it can scare me. I know so much about mental illness, I feel like I should be well beyond that. But I'm not. Understanding and empathy for MI obviously is going to take a long time, when even other MI people like me can't seem to get it.

    Not sure if this is a possible idea, but maybe in the future you could have a friend/family come by once a week or every other week to help you keep your place in good shape. I know that I need help with cleaning because of OCD issues, and without some help, I would fall very, very far behind in that department.

    Hope you feel much better soon.
    Adventures in Anxiety Land

  4. This post is so heart touching and vivid with the details in your writing. And I really appreciate your honesty about the condition of your place. My home is incredibly messy.

    I am proud of you for getting your mom to help with all the cleaning.

  5. Jen,

    You are the bravest person I have ever had the honor of knowing on the internet.

    You may be struggling now, but you are obviously aware that you are and that's what's important. Congrats on getting your apartment cleaned.


  6. Hi. I found your blog on google after I searched for Schizoaffective Disorder. I like your blog. It seems like you are a true survivor so I admire you. I am struggling with the voices and visual hallucinations right now. I just discovered the headphones the other day. They truly help to block out the bad stuff...Thank you for sharing your experiences. It's good to know I'm not alone.

  7. I have Bipolar Disorder and when I wasn't taking my medication I used to talk to myself. I've been too embarrassed to blog about it, but your honesty has given me a new perspective. Thank you; I'm going to read every post from now on.

  8. Hi Jen, thanks for writing during this stressful time. I hope that the increase of a couple of your medications will help to reduce your symptoms. Congratulations on getting your apartment cleaned. Why don't people, especially people in the mental health field and family members, understand that basic home cleaning is a serious problem for most of us who live with psychotic disorders?? We need help. Just a basic cleaning service a couple of times a month would vastly help and would reduce our stress levels considerably. For you especially because you have a part time job and are active in NAMI and NOW amongst other things, you need a little help. You should be being rewarded and not penalized for being as motivated as you are despite having persistent symptoms!

  9. I agree with Kate, Jen. I struggle with basic cleaning too (I'm bipolar with episodes of psychosis). My Mum has often had to bail me out, and like yours, outdoes me in energy at 80 years old!!

    I'm currently engaged in trying to get a direct payment/personalised budget from my local council that would enable me to pay a cleaner and personal assistant. Like Kate, I feel that these issues should just be understood. Let the rest of them cope with psychosis and depression every day and see how tidy their homes are!

    Grrr. It makes me mad. But well done Jen. You are an inspiration and you're doing great.

    Zoe x

  10. Do you find that a therapist helps you out with managing voices? I've been thinking about seeing one lately because my voices are pretty much unbearable.


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