Tuesday, November 17, 2009

The Jenny Tree....life begins; life ends

When I was three years old, my grandfather on my mom's side took me into the back yard of my grandparents' house, and we planted a tree. It was named The Jenny Tree and, at the time, it was a little sapling about the same height I was. It grew. Pop would take pictures of me next to the Jenny Tree as she got taller than I was.

We moved from Baltimore to Florida when I was six years old, but we would visit my grandparents at least once a year - summer or Christmas or both. Each year, Pop would take more pictures of the Jenny Tree with me standing next to her. She grew, and grew, and grew. I was able to climb her eventually. Now, she's not so young anymore; a huge, formidable presence, in that same spot, in that same backyard of the house in which the same two grandparents lived for sixty years. The neighborhood has changed. People have moved. People have died. New people have moved in. My grandparents were always there, in their house, the most familiar place I can think of that has stayed the same since my childhood. They never moved. They never wanted to.

Last night, my grandfather was moved into a hospice. He has been suffering from prostate cancer for a long time. Now, the cancer has spread to his bones. He has not eaten in days, and is asleep most of the time from the medications. Hopefully, he is not in much pain, but I don't know for sure about that. I know medications have their limits, and that bone cancer is some of the most painful pain there is.

Due to my illness, back when I was starting to develop paranoia and terrible fears at age 24, I started to be afraid of my grandfather. It wouldn't be clear for six more years that I was actually psychotic. The delusions took a few years to become rock solid in my brain and basically destroy my relations with most of my family completely. At the acute phase of psychosis, in a hospital, where I was supposedly getting treatment for dissociative identity disorder (which I do not have, obviously, but it seemed like I did then), I accused people of abusing me as a child. I sent the police to their houses. I had them investigated. I thought I was doing something to protect children in my family. What I was really doing was obliterating my relationships with both my father and my grandfather. And those relations were never the same again since, and never will be.

After I got put on medication, after I realized that most of the things I believed were happening in the world were not actually happening at all, after I learned what it meant to be delusional, paranoid, to be hallucinating, and to hear voices - when I was finally able to think a little more clearly, I apologized. I apologized on the phone and via a letter. But the damage was already done. My grandfather didn't want to talk to me. He thought that I had spread the stories my brain came up with to my entire family. I had a website with links to sites about sexual abuse, and someone found it and told him that I was writing on the internet that I had been abused. He figured that this meant I mentioned him on the website. which I think I did briefly before deleting that page. He said I ruined his reputation. He didn't say he forgave me. I don't think he ever really did.

Two years ago, I went to Baltimore to visit my grandparents. He was getting radiation or chemo then, and he looked very ill, thin, and pale. I hadn't seen him before that in a few years. I wanted to say something, to explain, to make him understand that the hurtful things I did were honestly not intentional, and were done by a brain that was malfunctioning severely. He didn't want me to stay at his house, so I stayed in a hotel room. My mom was invited to the house; I wasn't. And I don't really blame him for that. I understand.

Before I left town, I gave him a hug. I think I told him I loved him, though those words are hard for me to say to anybody. I didn't go back after that visit. I wanted to, but didn't have the money to buy a plane ticket and a hotel room, and a rental car to get around. I just didn't have the money. It wasn't that I didn't want to go. I thought I would, eventually, when I got the money together. I thought there was time. But there was no time. Today my sister held the phone up to my grandfather's ear in his hospice bed, and, since the nurses said he could hear but not speak, I told him I loved him, that I would take good care of the Jenny Tree, and we would all take care of my grandmother. And, once again, that I was sorry for everything. I hope he really could hear me.

Memories are tricky. It's very hard to dis-remember something. It's hard to remember that what you remember never happened. It's hard to ever know for sure if it did or it didn't, when your brain tells you it did. When my brain tells me the CIA is after me, it's obvious that I'm psychotic. When you say someone abused you, most caring people feel empathy towards you for this but never realize if, by some fluke, you happen to have imagined it all.

But here are things I do remember:
-I remember the dirt, thick and heavy, while Pop shoveled it, clearing a hole for my tree.
I remember the smooth grass tickling the bottom of my feet while I ran around the yard at my grandparents' House, and Pop watching out the window, while I fed the squirrels. He always fed birds and squirrels.
I remember him picking me up so I could see out the window into the backyard where the squirrels and birds were, when I was too little to reach the window myself.
I remember him reading the Sunday comics to me
I remember how he treasured the "official documents" I wrote every year about how I was NEVER going to get married under any circumstances when I grew up, because I did not want to be held by a "ball and chain" to any man, and I knew this when I was 8 years old. The documents were signed by various family members for authenticity, and then kept in a spacial, top secret drawer inside the secretary in the living room. I think they are still there.
I remember Pop mowing He lawn, and working on plants and squirting me with the backyard hose.'
I remember him smoking his pipe, watching is black and white 1930's movies of which he had memorized the scrips because he watch them so many times, and me saying "Why do we have to watch this again???"
I remember him pretending to chase me with his handkerchief, and when he and my uncle shot at me and at each other with rubber bands.
I remember some fun times with my grandfather
I remember his "tourist guide" speeches about the history behind every neighborhood or national park or street, or building we drove by or visited. He was always full of knowledge, and I always learned some things on this trips.
I remember the serious look on his face when he sat at the dining room table paying bills and doing paperwork, but I also remember his laughter.
I remember the times when he tried to get my goat by saying sexist things, to which I would always retort, vehemently. He's say feminazis ruined the world; I'd say he was a misogynist neanderthal, and he'd laugh hysterically, He got me every time.
I remember trips to Disney World when he came down to visit us in Florida with my grandmother, and how he got sweaty and hot, and how I knew he was not in the best physical shape
I remember his pipes and the smell of them, the familiar smell of my grandparents' house.
I remember his books, all about history, and how he's show me them and tell me to read them even though I wasn't old enough to understand what I was reading
I remember how, after my dad left, my grandfather came down and mawed our lawn
I remember his Juicy Fruits he kept in a special drawer in the dining room, and also in the trunk of his car, and how he'd give us all candy whenever we visited
I remember how he spent years in his Lazy Boy recliner in the living room guarding the remote control with his life, and how we'd try to steal the remote whenever he wasn't looking, and how he'd yell and throw a fit, and we would all laugh

He has his flaws, as we all do. He isn't perfect, and neither are you and I. I remember his temper. But more importantly, I remember a charismatic, formidable figure whose absence will make things feel strange.

Tomorrow (it took a couple days to write this post) I am going to Maryland. I will take a picture of the Jenny Tree.

Thursday, November 12, 2009

shaky times

My perceptual problems have returned recently. It started a few weeks ago. I'd hear a voice here or there. I'd hear someone using doublespeak and sending secret messages. I'd shrug it off and hope that it wouldn't get worse. I was going off Seroquel - one of the two medications that caused me to gain 100 pounds between 2005 and 2008. I wanted to be off of it, and my last ARNP plus my current one agreed that I didn't seem to need to be on so. much. medication. I am, after all, practically a walking pharmaceutical company. I should have tattoos from Eli Lilly and friends all over my body and charge them for the display.

Unfortunately, it seems that going off Seroquel caused me to begin going off reality too. I fell into a completely horrific state two days ago, and being that I'm not sure who reads this blog anymore, I'm really rather wary about discussing it here. Past psychosis is easier to admit to than current psychosis is. But the whole point of this blog was always to tell the truth about this illness and how it affects me (and others). So I'll tell you a bit about what happened.

I'd been going to a gym, as part of my weight loss regimen for a few months. I was walking an hour and then doing light weights or bicycling for 20 minutes or a half hour after that. This was something I worked up to for many months. I have Fibromyalgia and exercise does not exactly come easily to me. I used to be incapable of walking for ten minutes. But gradually I went from a few minutes to 60 minutes. This has helped me to lose the 46 pounds I've gotten rid of since April, and I'm really happy about that.

Anyway, back to the gym. My sister-in-law let me use her gym card because she had an expensive membership that she never used, and it was about to expire. She gave it to me, and even though it has her name on it, I went ahead and used it. Nobody questioned me about anything. I had no requirement to prove who I was. And to be honest, I felt only slightly guilty about the inherent dishonesty in this behavior, because after all, it was paid for and no one else was getting any use out of it.

Then came the time when the membership needed to be renewed. After working out 4-5 times a week there for months, I knew that I need to continue doing so if I was going to continue losing weight. So I got talked into the whole rigmarole sales pitch, and just renewed it. I said my real name was not my sister-in-law's name but my own. Nobody seemed to care that my name was different. They went ahead and gave me the forms to fill out. I filled them out, gave my check, and end of story. Almost.

Two days ago, I went to the gym and was told immediately that the person who renewed my membership forgot to have me fill out a credit form. The perky gym sales chick assured me they weren't going to actually check my credit, they just needed information in case I didn't pay my bill each month, so they could track me down. That's when I got nervous. I looked at the form. They wanted my birthdate and my social security number. While it was easy to explain away a different address and phone number (which I didn't have to explain since nobody ever asked about it) than the ones my sister-in-law had, I thought in a panic, "how am I going to explain that I have a different birthdate and social security number??" I began to freak out. But, not really knowing what else to do, I went ahead and filled out the form. After all, I had already signed a year-long contract with this place for which I'm sure they were going to hold me liable regardless of what my birthday turned out to be.

I went on the treadmill, and started my usual walk, but was becoming more and more certain that the perky sales chicks were going to call the perky police, and I was going to the slammer. I thought about this more and more. Then I saw it. A police car. It was parked right outside with its lights on, waiting for me. It was really there (I swear I did not hallucinate the police car, but think what you want about that), and I was terrified. I fled into the locker room. My cell phone rang. It was a bill collector calling, supposedly, about a medical debt I had. I didn't think it was really a bill collector, though. I knew it was the police. There was no back entrance to sneak out of. I was shaking. I was absolutely convinced I was going to jail.

This went on for a while. I left, and walked towards my car waiting the entire time for the squad car to pull up beside me. It didn't. I got in the car and figured I'd wear my seat belt so I wouldn't get charged for an extra crime by not wearing one. I started driving and crying hysterically at the same time. (Note: bad idea). I was sobbing about how I didn't want to go to jail, and I could barely breathe. I thought about running, but didn't know where I could go that the police wouldn't be able to find me. In the midst of the sobbing, I called my Mom. She didn't know what I was saying, because when you can't breathe, you can't talk too well. My sister got on the phone. Eventually she understood what was happening. "Why would the police be after you?" she asked. I explained. "When did you start thinking this?". Hmmm..there's a clue that I'm not being believed. I began screaming about how I was not imagining this and I was not hallucinating and I was not crazy again, and on and on.

Eventually, my mom and my sister got me to pull the car over because I should probably not be driving if I can't breathe or think. I did. Then my sister be gain questioning me, "What other things have been going on? What happened yesterday? Something happened yesterday too, didn't it?" I explain I didn't want to go to the hospital but more importantly I didn't want to go to jail. I couldn't stop the hysterical crying and shortness of breath. Finally, my sister asked what the dosage was on my Seroquel back when it was, like, actually working and I said it was 800. "Go home and take 800 of Seroquel and your other meds and call me back after you've done that." This was wise advice, I see in retrospect. At the time, I couldn't make sense of anything, so I just did as told.

I ended up on the floor of my bathroom, sitting on the yellow mat, holding a stuffed rabbit I've had since I was two years old, with my cat Spooky watching me from her spot beside me. I thought the police would maybe not find me there, I guess. None of my thoughts were making much sense. I was waiting for them to arrive at any moment. I heard sirens. These were not hallucinations. In my neighborhood you hear a lot of police sirens. It's not the best neighborhood when it comes to crime, and I also live relatively close to a police department. So, exactly like other times when I've been paranoid, I heard the sirens and they made me even more distressed than I already was.

This went on and on, until, finally, the meds kicked in and I fell asleep. The next day I woke up with a mild fear of the police coming, but nothing as bad as the night before. Hence, I felt more calm than the night before, and less afraid. But not completely unafraid. I had an appointment with my ARNP already scheduled for that day, which was the main reason my mom and my sister probably didn't call the police to send me to the hospital. My therapist had noticed that I was having more problems since the Seroquel was decreased, and recommended I get it raised again. So that is what I did. I explained that the police were following me - though I realized maybe they really weren't - and that I couldn't stand the thought of gaining more weight after I had tried so hard to lose weight. She claimed she would "monitor" me closely so that I wouldn't gain more weight, but I've heard that before enough times to know it's a load of bullcrap. I was not thrilled to admit to it, but I knew I needed to go back on the Seroquel because I couldn't live through another night of terror like the night before.

So I'm back on 800 mgs again. I'm exhausted, sluggish, groggy, and hungry. The side effects of this drug really suck. But I don't know what else to do, and apparently, neither does the ARNP. Such is life with Schizoaffective Disorder.So that's what has been happening lately. Hopefully these episodes will cease, but I can never be sure of that.

I am still afraid to go back to the gym.

Monday, November 09, 2009

No help for students here

Last week was "Disability Awareness Day" at the college where I work, and where I sometimes take classes. I took time off work, took a lot of information from NAMI, and a display board, and set up a table to represent NAMI and to provide mental health resources for people who need them. Just like last year when I did this, there were no other groups there that had anything to do with mental health. All of the organizations focused on other disabilities. Unfortunately, though I do not regret doing this, I did not reach much of an audience. Few students came by any of the tables, and even fewer came by mine.

When one group of young students stopped by, a guy with curly black hair about, 19 years old, was openly laughing at the mention of "mental health". I said, "These are brain diseases. They affect people's brains, just like any other disease affects the body. They are physical and sometimes genetic. There is a lot of stigma that surrounds these illnesses and that's because people are not educated about them." The laughing fool looked confused. He went to take the last copy I had a of a resource book just because his friends were picking things up (as they at least seemed interested), and I told him not to take it if he wasn't going to use it as that was my last copy. He put it back as he had no intention of reading it.

But, that was the negative side. On the positive end, there were a couple of people who had questions about mental illness and about NAMI. And it was worthwhile to be there just for them.

This college offers no resources for mental illnesses whatsoever. This day of giving out information at one campus for two hours, one day a year, is the only thing I know of that they do at all which relates to mental health, and the only reason that relates to mental health is because I'm there with some pamphlets. There are no counselors for students to go to. There is not even a sign with a suicide hotline on it anywhere. There is nothing. This college has nine campuses and many thousands of students. My friend who is a professor at one campus has told me repeatedly that he tries to get the college administration to open up a counseling center for students who need help, and these people don't listen. He has told me of many students who crossed paths with him, who needed mental health assistance. I find this college's lack of concern about this issue to be ridiculous and disgusting.

Young adulthood is the time period when Schizophrenia usually starts. It is also the time when Bipolar Disorder sometimes starts. It is a time when many people deal with stress and depression, some attempting suicide. Many veterans returning from Iraq and Afghanistan also come to college here, and my professor friend is concerned for their well-being as well. Many of them deal with Post-Traumatic Stress. The college offers no resourcs for them either.

What the college does offer, is something called a Male Outreach Initiative. This is an actual department in the college devoted to increasing the number of males who attend this school. They offer special services just for men. There is a women's center, too, but it's not really funded well, nor is it large enough to help women with anything. There is ono women's group on this college's campuses, no feminist organization of any kind. There are no mental health support groups. There is really not much of anything to assist a female student, such as myself, who goes to this school and needs some help. They leave you to fend for yourself.

Since it's a community college, I realize funds are an issue. But at the same time, because it's a community college, it's huge and it's the only large college in this county. There are tons of students of all ages, and if mental illness affects one in four people, as the statistics show it does, then there are thousands of students here who could use help. I know there were times in the past when I was lost, confused, horribly depressed, delusional, and suicidal at this college, and that I went and sat there in the library, or on a bench outside, or in a class, in a state of crisis and confusion, with no one to turn to other than, say, a professor whose job it is to teach English Composition 1101 and not practice psychiatry.

This is not acceptable. This situation is in need of correction, but obviously mental health resources are not available in many other schools, and in society at large, either. There is a waiting list about a year long to get into the community mental health center that I go to, if you're a new patient. If you have no insurance and no money, you may be eligible for this one clinic in downtown St. Petersburg, for which you need a referral from a physician, to get your medications temporarily, but you may not be eligible for that even if you manage the 45 minute trip to get there during the office hours.

While I'm glad there may soon be a health care reform bill that passes through the Senate, I am left to wonder when adequate mental health care will be available for all the citizens who need it in the United States. Probably not in my lifetime.

Tuesday, November 03, 2009

and we're back!

After some difficulties regarding a person who saw a post here that mentioned her/him, I had to make the blog private temporarily. I apologize to all my readers, because I know how annoying it to click on a link and then see that you need a special invitation to read the page. Unfortunately Blogger doesn't have a way to block anybody (as far as I know), so I had to block everybody, for a couple of weeks. Now that the situation with that person has been resolved, I hope that things can get back to normal around here. I need this space to write my stuff. It helps me to think clearly about issues that I'm dealing with, to evaluate various options of how to respond to situations, to debate with myself and others, to affirm who I am, and to feel much less alone in the world than I feel when I do not have this place to write.

Hence, there's a new guideline. If you don't like it, simply leave. Don't read it, and don't write to me about how I should remove my writing from my blog because you have a problem with what it says. It won't mention you. I don't write about other people here hardly ever, so there's not much chance you'll find your name. And if you do happen to find, and don't like it, then let me know without harassing me and accusing me of libel (this includes anybody and everybody). I don't lie here. What is said here is true. It is my view on my world, and it is primarily, after all, about me and Schizophrenia. It's not about you. If you think it is, I am sorry for your ego problems. Simply be gone with yourself. (Not to be rude or anything, but seriously, be gone).

Everybody else is welcomed, and I love your comments, and I encourage you to return. And if you want to post something here or share a discussion with me here by writing a post together on a specific issue, let me know. If it involves the issues that this blog is aimed to address such as psychosis, suicide, solitude, perseverence, and living with a mental illness or other disability, then I will certainly consider writing about the topic of your choice or letting you post here yourself.

Again, I am sorry that the blog was gone shortly, in case you stopped by. I won't be making it private again, so please return whenever you like.


Monday, November 02, 2009

perhaps I'll finish school? maybe....

I'm very nervous about going back to school. While I really want to finish my degree, which I first started working on 15 years ago, I haven't been able to complete any classes in the past year and a half. I want to be able to go back, and I think I might be able to do it, but I'm not sure. I really need to get past this hurdle in my life. It is important to me to get a degree so I can feel the fulfillment of an accomplishment finally achieved, and it's also important because I want to go on to get a Bachelor's Degree and be able to do a job that I actually can afford to live on, unlike my $9 an hour job which has no future to it. I want to think that someday I'll be able to go off the disability benefits, work full time, and support myself through work alone. I don't know how feasible that wish actually is, however.

I want to be able to say, "I have a degree", to myself. It's not about a status symbol, or what other people think of me. It's about what I think of me. I think I'm a failure, and I feel that way all the time, because I have not accomplished most of the things I've wanted to do in my life. I'm tired of feeling that way. I want to feel that I have fulfilled some goal other than just survival. I want to graduate from college. I want a future where I'm not in total poverty all the time. I need a degree to make that future possible.

So, I am trying to go back. It's really up to the school as to whether or not they'll allow me back in. They don't have to allow me, since I've already surpassed the number of attempts at classes you're allowed to make in your life, and the government also does not have to grant me any more financial aid money. Without financial aid and approval from the school, then I can't go back at all. I guess we'll see what happens.

In the meantime, I've been keeping myself busy with activism activities for NAMI and NOW, my part-time job, and trying to lose weight. I also battle depression these days, but that's old hat to me, and no big deal really.