Monday, May 23, 2011

Explaining to my old best friend why I missed her wedding due to being psychotic

Thank you to everyone who left such thoughtful comments to my last post. I appreciate you all. I value your insight and the stories you shared. I hope to have time to visit all of your blogs soon.

Tonight I wrote a letter to an old friend. She was my best friend, growing up, and I thought back then that we'd be best friends forever. But things did not work out that way. People change. Life gets in the way. I had a serious mental illness which I didn't know I had for about eight years, at least, since it began. Or at least, since the psychosis began. I had the depression half my life before that. So, about twelve years ago, I missed my best friend's wedding. I was supposed to be in it. I was supposed to be a bride's maid.

But I missed it because I was living in Maryland going psychotic. My friend lived here in Florida, and wanted me to travel down for her wedding. I would have done it if things had not been such a mess in my life. At the time, I believed, erroneously, that I had been horribly abused by members of my family as a child and blocked out the memories. I was beginning, also, to have visual and olfactory hallucinations at the time of my friend's wedding plans. I had no money. I would soon be homeless. I had no way of getting to the wedding and no way of making my brain function well enough to get myself there. But how was I supposed to explain this, when I myself, did not know what was wrong? I couldn't explain. I never explained.

Until now. I wrote her a letter, and I told, as briefly as you can explain a decade of your life, my story. I told her about the illness, about how bad it got, and about how sorry I was for missing her wedding. I know from something she said years ago that she never forgave me for it. I know it was a hurtful thing to do - to miss your best friend's wedding and never explain. So I wanted, even so many years later, to give the explanation. And so I did. I don't think she'll really understand. I don't know if she knows anything about mental illness. Most people are very in the dark about serious mental illnesses and have many misconceptions about them. Which is why so many of us do not disclose our illnesses to so many people around us. I know I don't tell everyone, and that is on purpose. I wish that the world was different, and I could be safe in disclosing to everyone. But it isn't, and I'm not.

I don't know how my friend will react to my letter. I don't know if she'll forgive me for missing her wedding, or if she'll understand now why we ended up no longer being friends. I lost many friends to this illness - all my close friends except one. I lost much to this illness. Many homes, many possessions, many relationships in my family, many years. I lost a lot. Losing this friend was just one of my many losses. To her, I'm not sure what it was. I'm not sure how much she cared, or if she was bothered that we lost touch. We're friends on Facebook now, but we no longer have much in common at all. So we don't talk. But I needed to get this off my chest, so to speak. And I felt she deserved an explanation to why I missed her wedding. I felt she deserved to understand my erratic behavior over the years. I do have an explanation for that. It was not just a bizarre personality defect. It was a disease. A disease which I hate, and which I have no choice but to live with as best I can for as long as it stays with me.

Some people, like my old friend, would likely see this as a spiritual problem. She is very religious. But it's not spiritual problem, of course. It's a disease, like any other. A neurological defect. Not a defect of the soul. I do hope she is able to understand that.

When I stopped returning her phone calls about her wedding, her fiance started calling me. He didn't know I was psychotic, and neither did anybody else, because I hid it then, and people just didn't expect that I'd become delusional. And so he called, and I avoided his calls. I was also very physically ill, with what was then diagnosed as Chronic Fatigue Immune Dysfunction Syndrome and Fibromyalgia. I was suffering physically and taking a lot of meds. I was not diagnosed with a psychiatric disorder - a major lack of insight on the part of my doctor. I saw a therapist who agreed with me that my problems came from abuse, and another one who suggested that I had Dissociative Identity Disorder - a label that I would believe in for years, even though it was totally off base, because I thought professionals knew what they were talking about. I didn't realize I might be psychotic and people weren't picking up on that fact.  I was also manic and depressed, in an alternating fashion, doing crazy things while manic that I still have nightmarish thoughts about, and which I won't even talk about here because they're humiliating. But there were people who knew all this - a doctor, two therapists, and they never picked up on it. Never said, "Schizoaffective", or "Schizophrenic", or even "Bipolar". Just "Dissociative". And how very wrong they were. I suffered for their wrong-ness for years to come.

So I missed my friend's wedding. My best friend. And very shortly after that I was living in a homeless shelter in a city where I have dozens of relatives. I had reported my father to the police when he held his fist to my face during an argument, as I truly believed in my delusional state  that he was going to murder me. Of course, he was never going to murder me, but with the delusions that were backed up by therapists' suggestions, I thought he was. So I called, and the police came, along with my uncle, who is my dad's brother, and a long-time police officer. My grandparents, who I was living with, were not exactly happy that I had done this, having the police at their house. They kicked me out. I had nowhere else to go, because I believed my other grandfather would rape me if I was in his house. He wouldn't have, but this is what I believed, so I could not sleep in his house, for more than a few days. I went to a homeless shelter, because I didn't think any of my other relatives would let me stay with them, and they didn't offer, and I didn't ask them.

Things went downhill after that, and then further downhill, and then further still. And this blog tells that whole story, so I don't need to try to sum it all up here in this post. But I wanted to tell you about asking for forgiveness. Even though my disease is not my fault, and the fact I could not get to my friend's wedding was not my fault, I do believe it was my responsibility to give her an explanation as to what happened. So that is what I finally did.

I also told her that I don't know that I'll ever be able to have a wedding. I don't know who would want to marry me. Perhaps someone would, but who knows. I don't think I can have children, even if I want them. I told her that. She has three kids and is adopting two more. I don't have the finances to attempt any of that, even if I wanted to, and I don't have a partner, which I would want before attempting it. Lately, all this is making me very sad. I cried as I wrote the letter to my friend. I sat here, in my messy apartment, which I feel incapable of cleaning due to paralysis I get when I'm overwhelmed, and I just cried. Because all of this, the whole story, and the continuing repercussions of this illness, sometimes makes me very sad.

Saturday, May 14, 2011

I'll never be a grandmother. I'll never be a mom.

My maternal grandmother was down from a northern state visiting here recently, and I love her dearly, so it was great to see her for the first time in a year. I went several years without seeing her at all when I was very ill, not diagnosed or treated, estranged from all of my family. Hard feelings built up in many of my family members towards me, and in me towards a few of them, and we're frankly just not close anymore, most of my relatives and I. Most of this derived directly from my mental illness, though in part it was a natural evaporation of closeness that comes with living 1,000 miles away from your relatives and rarely seeing them. But my Nanny, I always tried to keep in touch with her, and in the past couple years since my grandfather (her husband, who had reason to hate me) died, I've tried more and more to renew my close ties with her, the ties we always had, most of my life.

She is a woman of few words, and of no temper tantrums. Very opposite of my mom. She is a woman who spent her entire 82 years taking care of other people, and now finds herself at a loss as to what to do with her time, having nobody to take care of anymore (though to some degree she still helps my mom). She is someone I have always enjoyed being near, not because she's overly emotionally open, but because she always seems happy to see you, and wants to do whatever she can to make you comfortable when you're in her home. And I want to do whatever I can to be there for her, across these miles. So when she was in town, it was great to go to Disneyworld with her, to take her to the movies, to play a game with her, and my mother, brother, and sister.

But, me? I'll never be a grandmother.

This fact hit me smack across my face the other day in a McDonald's. It was about 5:00 PM, and apparently many grandparents take their grand kids to Mickey-D's at that time of day, because they were there, tons of them, crawling across the tables, climbing at the walls, yelling, laughing, screaming, crying, crawling, throwing things, demanding things, eating, singing, playing, all those things little kids do. And I thought, "I will never have this in my life. There is no opportunity for this to ever be there. I will be an old woman with no children, and no grandchildren".

And most likely, I will. I am a feminist, and I am pro-choice, so I am not prone to thinking it is my destiny in life to have a child. But I would like to have the OPTION to have one, if i want to. And, I really don't have that option. That option was robbed from me by this illness I have. This schizoaffective crap. Who is going to want to have a child with me, for one thing? Who? Nobody I know. Nobody I will be likely to meet any time soon. I do not date. I have not had a boyfriend in 3 1/2 years. I am totally celibate. There is no child coming from this womb.

Who is going to be dumb enough to have a baby with all the drugs I take from so many Pharmaceutical companies that will lie to protect the dangerous side effects their drugs can cause, running rampant through my body? Who would advise me to put a fetus through that kind of atmosphere? No one.

I asked the doctor who is the director of the community mental health center I go to, when he did my recent Psychiatric Evaluation, about how much my medications would affect a child if I ever did get pregnant. He was unclear as to how much of an effect there would be. He said it would be possible to have a child. He said Klonopin is the one I'm on that most frequently causes birth defects. But what does he know for sure? I have been on many, many, many medications over the years, most of which he doesn't know about since I was only meeting with him for an hour and there was no time to discuss all those. I have probably got a damaged liver by now, and if I don't, I probably will soon enough. I have been on psychotropic drugs for 21 years. That is a hell of a long time to experiment with your body.

So I won't have the baby clothes shopping sprees, or the baby shower, or the first day of kindergarten, or the screaming infant, or the laughing toddler, or the day she learns how to walk, those things a mother has. I won't have the honor of guiding a child in the way he, or she, should go, and of reading them bedtime stories and making sure they are not afraid of the Bogey man. I won't have their college graduation, their wedding, their first apartment, their children. I won't have those grandchildren. Unlike my Nanny (grandmother), I won't have the trips to Disney world, and the visits, and the people to take care of all around me. I won't have the people to take care of me, either, in the end. I won't have anybody.

It's not all sunshine and lollipops with kids. I have even thought many times, I'm glad I don't have a child, because my life is hard enough without another person to take care of. I'm not entirely sure my nerves could handle the screaming and crying, or that my stomach could ever handle changing a dirty diaper again; it's been many years since I worked as a babysitter. I'm not sure I could ever afford a child with my income, and certainly, now, I could not. I don't know when my income will ever be any higher. And, certainly, I do not have the physical health, stamina, or energy to chase after a child. I do not have the mental well-being to be entirely focused on one either. At least, not right now.

I wouldn't want to have a child alone, and I couldn't financially do so anyway. I would want a partner, someone to help me raise this person. And I don't have any hopes of finding a partner again. My taste in men is often poor. I fell for a totally narcissistic drug addict who berated me for getting overweight the last time around, and I have shied away from men ever since. I am overweight, and certainly don't feel attractive. My chances of finding a guy who would be interested and who I would find interest in are slim to none. I have little interest at all in men anymore. I just don't care much about it. It doesn't bother me that I have no one in my life romantically. I just occasionally wonder what life might be like if I did.

And, occasionally, I wonder what life would be like, someday, if I were a grandmother. But I'll never get that chance. Sometimes that makes me very sad. I would like to see some lineage form around me, someone to carry on my name, my ideas even...but not my illness. I wouldn't wish that genetic demon on my worst enemy. So perhaps it's best that I remain childless, but sometimes, sometimes, I just wish things were different. (Especially when bombarded with images like the above from every TV commercial, show, and movie out there.)

Wednesday, May 04, 2011

On being "crazy", in a world that belittles "craziness"

One day recently, at work, a coworker was going on a rant about something and she said, "If it doesn't make sense to do it, then it's CRAZY!! THAT'S THE DEFINITION OF CRAZY!! AND WHY WOULD YOU DO SOMETHING CRAZY??!!" I listened, and thought: A) You really don't know what crazy means or why the term is offensive when it's been used against your self, and B) How many times has this woman seen my blog? Does she read it? She has seen it on my computer, I'm sure.

Another day recently in a meeting of an organization I'm a member of, a woman said, "OH, maybe that was just one of my HALLUCINATIONS!!" Again I thought, A) You don't know what it's like to have your life destroyed by actual hallucinations, do you? and B) How many times has this woman seen my blog? How much does this woman know about me? She knows people who know I have a mental illness. What else does she know herself?

Today, and everyday, at work, people call (my job is to answer phone lines), and I think they're faking this call to really check up on me because either:
  1. They're from a government agency checking to see if I have a legitimate disability or not.
  2. They're from my job, checking to see if there is some reason to fire me.
  3. They're from the FBI or the CIA or some other intelligence agency checking up on me.
All of these thoughts are rather disconcerting on different levels. Of course, I know it's not the CIA. The other stuff, I am not so sure about. And even though I know it's not the CIA, I still wonder if it is quite frequently. This is what it's like to be "crazy" and have "hallucinations" and delusions. This is what it's like to be me.

I'm so tired of hearing people belittle mental illness with their stupid snide comments. Today, I posted a link on Facebook to an article about how people who work in Apple Computer  factories are being forced to sign contracts swearing that they will not commit suicide, because so many employees at those plants have killed themselves in the past couple years. One of my "friends" apparently thought this was a joke, putting a little face under it as if to say, "hahaha!" Yeah, suicide is so damn funny. I am really laughing about it myself. Ha. Ha. Ha. Dead people. Ha. Ha. Ha. Oh yeah, maybe that's not really amusing...

What is wrong with people? I am really confused, especially when I've told a person that I have a mental illness, or when I know they've seen my blog, and then they make jokes about mental illness. Like what about that is appropriate to you? What gives you that audacity? What makes you think you're funny when you belittle my life and the suffering of millions of people so you can be amusing? F. You.

I'm wondering if it would really make a difference if I just came right out and told everybody I meet that I have Schizoaffective Disorder, and then they would somehow  become more sensitive about mental illness, but the truth is, I really don't think they would. I know that at times I'm paranoid, but I also know that at times, I'm not.

Another slightly annoying thing occurred recently when I had a psychiatric evaluation done by a doctor who is not my doctor at my community mental health center, but is the medical director of it. He is a very smart man, which seems clear when you speak to him. But when he asked me what I was going to college for, and what I wanted to do afterwards, I told him I really would like to be a mental health caseworker/ case manager and he said, "Hmmmm.... People with your condition have to be very careful about managing the stress in their lives, you know. People with your condition can get worse with stress. You might want to rethink that."

Wow. I didn't realize that stress could possibly affect me. Oh, yeah, that's right, I have a brain, so I guess this did occur to me before. I guess managing college, a part time job, and volunteer work in two organizations, plus moving  apartments recently is not handling any stress at all!

Of course, he didn't mean to be offensive. But I did take offense. I do think I'm capable of being a case manager. Whether I can ever handle working full time is a different story. But if I can work full time, then I think that is a job I could handle. And, incidentally, my case manager thinks so too. So does my therapist. And both of them know me better than a doctor who has only spoken to me for 45 minutes tops.

This is just yet another example of people underestimating the capabilities of those of us who have serious mental illnesses. It happens all the time. I have even seen it happen within NAMI where people sometimes assume that everybody is as seriously ill as the people they know who are the least functional among us. And we're not all that dysfunctional, so sometimes this results in those of us who are "higher functioning" having our concerns ignored completely. A lot of our education meetings focus on caregiving and professional guardians, and running ALF's and things like that, which means the meetings are often for people who do not actually have mental illnesses, but are showing up because they deal with a severely ill person who can't fnction well on her own. I would like to see more meetings that address the concerns of those of us with mental illnesses who come to the meetings.

And while I don't like the terms "low functioning", and "high functioning", I do see a difference in the way some people who live with mental illnesses manage their lives compared to the way other people with mental illnesses can manage theirs. There are people with Schizoaffective Disorder who simply cannot do all that I can do for a variety of reasons, and there are many people with mental illnesses who can do much, much more than I'll ever be able to do, like Elyn Saks for example. Sometimes those without mental illnesses lump all of us together and categorize us all in the "low functioning" pool, where our successes are seen as bizarre. I find this offensive.

So now that I've told you some of what offends me, feel free to  leave a comment about what offends you when you hear people talking about craziness, or mental illness. I know I'm not the only one who has these experiences.