Being a Weirdo, Being Crazy, Being a Crazy Weirdo.

If you really really feel the need to go crazy in America at this time, take this advice:

Be an atheist. Or a secular humanist, or an agnostic. If you must have a religion, be Christian or Jewish. And don’t take it too far. Stigmata lost street cred about the time suburban kids started playing with razor blades…you might be able to go crazy in America as a Buddhist, a Hindu, or a Muslim. But that is only a guess. I’ve never met a locked up crazy person who identified as Buddhist, Hindu or Muslim.

Whatever you do, don’t practice a weird religion and go crazy. It really doesn’t help.

I never planned to take up a weird religion personally, but that is how it worked out.

In college I desperately tried to take up atheism or secular humanism. You never saw someone try so damn hard to disbelieve in your life. At disbelief, I was a failure.

It didn’t hurt that I went to college in Boone, North Carolina…before it got big and fancy. It is tough to disbelieve in God in Boone, North Carolina, or, at least, it was then. But I digress…

Failing to become a non-believer, I tried to get close to Jesus. Best I ever got to there was a sort of take it or leave it feeling. I did get close to his mom, though. (We remain tight) Jesus’ Dad was a different story. After the good old college try was exhausted, I began trying on religions in earnest. Judaism and Baha’i were ruled out as soon as I found Jesus’ Dad.

I worked my way through Wicca and ended up at Santeria.

A small white woman in a big black religion. It worked.

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I’ve always felt that there are a lot of roads to the top of the mountain, the important thing is just to keep going up.

Some people have felt compelled to judge me harshly for the path I’ve taken. I can see their point. But this IS the path I’ve taken, and I’ve never really felt much like living in a broom closet, a bead closet, or any kind of closet at all.

Unthinkingly I revealed my religion to a psychiatrist. Their reply was, “Like the Sublime song?” Suddenly, for some reason, I had a very. bad. feeling. It rapidly dawned on me that an African diaspora religion that evolves on its own terms, in its own time was not going to do well in the face of modern psychiatry. I guess you don’t need to be very psychic at all to see that one coming.

The upshot was that the psychiatrist began to try to cure my religion at least as earnestly as trying to cure my schizophrenia. From my undignified position on the icky vinyl couch, I tried to debate that my religion was not pathology. And this with a person whose ‘research’ into the matter turned out to be watching “The Serpent and the Rainbow” They didn’t even get the right African diaspora religion to get misinformed about…

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Well, crap. Even a crazy person knows not to argue with an idiot.

That was probably about 12 years ago now. And I haven’t gone near a psychiatrist since. I have a plucky GP with big brass balls, and a great big heart. He keeps seeing me, keeps trying. And he listens. We laugh about stuff that nobody else thinks is funny. Like me, the crazy phlebotomist, who is too crazy to have a job being the only person in his office who can draw my blood.  (Everyone else in there thinks I’m crazy because I can stick myself. I only manage because I have no desire to die of liver failure brought on by Clozaril…)

I’d like things to be different. I get scared. I get frustrated. I get lonely. My sweet sweet man has been underemployed for a couple years now. Working shitty retail. Getting paid squat. No hours, unless he requests time off. If I was working, we’d be okay. Not great, but ok. But no. I sit here being crazy. And we are not okay. We get tired of eating what the food bank gives us. Our bodies are not used to that much soft white bread or canned vegetables, so we get sick. The cell phones have been off for so long we have quit wondering when we might ever have them. Now there is no gas. No hot showers, no cooking. We are eating from the microwave, the crockpot, and the grill in the backyard.

The whole damn mess is my fault. Or the schizophrenia’s fault, which is mine, too.

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And I sit in my room with my phantom screaming voices and jumping shadows, and my kindly ancestors, and my Gods. I try to find a way up. A way out. A road toward the top of the mountain.

But I have this one truth. It is not my Gods that make me crazy. It is my Gods that keep me sane.

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It Doesn’t Like Being Poked

It doesn’t seem like I’ve written very much at this point.

And very little of what I have written seems very personal, or very concerned with my own schizophrenia at all. However, even with so little, I have learned that schizophrenia does not like being poked.  And that it has ways of making its dislike known.

I really believed that I had fully explored every possible permutation of insomnia, but I am now getting to learn a new one. A complete, utter lack of any kind of physical tiredness, lasting for a couple of days at a time. It seems like it would be great for getting stuff done, but, while the body won’t rest, the mental function begins to decline sharply after a certain point.

The itching. I don’t even know if the itching is *real* or imagined. I don’t know if it is part and parcel of the schizophrenia, or unique to only me.  Already born red-headed and fair-skinned, my skin is reactionary by nature. Add in that I’m neurotic and I break out in hives as a reaction to everything and you already have a highly itchy person.  But this has taken it to a whole new level of itching. Fight or flight level itching. But neither fighting or running like Hell has helped. Maddening. Or, since technically, I’m already mad, would it be madderening?

Finally, there is a gradual process by which cherished and familiar objects become pretty threatening. By nature, I think I’m an animist. I anthropomorphize everything. All of my cars have had names, my coffee percolator is Mr. Perky, the vacuum is Heimlich, the iron is Smokey. I live in America now, not 150 years ago. These devices are the warp and weft of my life. I don’t need to be getting scared of them because I suddenly think they are up to no good.

And the schizophrenia caresses me like a lover. It promises silkily that everything will return to ‘normal’ if I will just behave. I know it wants me to stop poking it. It hurts when I poke it. I hurt when I poke it. And I wonder why I keep poking it.

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If deep personal analysis helped, I think it would be well-documented by now.  But no one can show even one single “cured” schizophrenic. Not one. There are records of ‘managed schizophrenia,’ there are records of ‘functional schizophrenia,’ there is documentation of schizophrenia in ‘remission’ but no one claims they have cured it. My odds are better at winning the powerball.

At this point, it seems worthwhile to consider why I am doing this. Questioning if this is helpful in any way seems reasonable to me.  Considering not further tormenting myself seems nearly sane now.

But. But. But. The schizophrenia itself does not like me doing this.

So the only idea I’m working with right now is that the enemy of my enemy must be my friend. As a matter of rhetoric, I can plainly see the flaws in this point of thought. It fails on many levels. But I have nothing better to work with.

So, with a badly broken brain, and a horribly flawed concept, I progress, if progress is the correct name for this.

Perhaps i have some weird illogical idea that if I bother the schizophrenia enough, that it will go bother someone else. (Hopefully someone who can express it is terms less banal that I )

In the meantime, I am trying a small experiment.

I know very well that I have never ever ever drank the amount of water I was supposed to. I like my water with roasted beans, exotic leaves, or best of all coca-cola. (hold the water)

So for the past four days I have been consuming 12 glasses of water every 24 hours. And I am hating every second of it. It is like tragically drowning, but I am the only person who is sad.

I wish I could tell you, at least, that I feel great-hydrated and refreshed. I don’t. I feel swollen, sloshing, distended, a lady great white whale…Moby Dickless, if you would. My fingers are puffy and graceless, and I don’t like that most of all. So, I’m telling you all right now that this experiment in healthier living has a firm time limit.

I’m going to give it six weeks. That is all. If my body can’t figure out what to do with all of this water in six weeks, then I’m going back to black coffee, iced tea, and Southern Champagne. (that’s co’cola to the rest of you)

I never once intended to be the healthiest corpse in the crematorium.

Oh, and if you know me, don’t worry. All that water has not interfered with my coffee drinking, but I’m not drinking cokes.

Wrestling the Dread

I have been fighting writing this post for over a week. I’m fighting it right now. In all seriousness, I can not imagine any possible present, future, or past for myself that does not include this fight. And even now, I’m avoiding writing this by talking about not wanting to write it.

My dad.

I would rather make out with Godzilla than talk about this. However, it is easier to talk about my dad than my mom, so I’ll start here.

As a small child, I was crazy close to my dad. He took me to Phillies games, Flyers games, taught me to fish, bought me a baseball glove and taught me to not “throw like a damn girl.” He pressured me into riding roller coasters and climbing trees. He taught me to set points, gap spark plugs, and the joy of big block 70’s engines.

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He taught me the importance of lying to my mother as he turned the floor of the mouldering shed in our backyard into his own personal nightcrawler plantation. (Those, in this context, mean big fishing worms-not zombies)

He took me to the ballpark, and really he made an extra effort to get tickets if my personal hero “Super” Steve Carlton was pitching. We would meet his work friends at the Vet. He introduced me to them as ‘his first-born son.’ Many years later, one of his car pool buddies was astonished to find out that I was, and had always been a girl.

He would take me on camp-outs in the Great Pine barrens of New Jersey. We canoed in the cedar waters there, and at times, I would give anything to smell that strange cedar water smell.

He taught me the ‘right’ way to eat a hot dog: mustard, sauerkraut, onion, if you felt bold.

From him, I learned to shut up and walk it off, to shut up and eat, to shut up and leave the stupid doll at home-we were going camping for chrissake.

Maybe this doesn’t sound too bad. Reading it, it doesn’t sound that bad. But I wanted to try to look at the good stuff first. It was that bad.

On his best day, he was volatile. He would scream, hit, punch, and swear. He threw stuff. It remember him throwing a long-handled pipe wrench at my head when I was about 8. Because I was too weak to break a seal on an outdoor shower. I felt like that was fair of him to do. After all, he had to stop brazing pipe to break the seal, and that meant he had to start all over.

He would unpredictably throw food from the dinner table, refusing to eat things he said were ‘ugly.’

But I really believe that he tried his level best to make me into ‘something.’ But the something he was trying to make from the wet, unformed clay of my childhood had nothing to do with who I was or am.

I was supposed to be the ‘smart kid’ in our family. My mother, it was generally acknowledged, was fairly dumb, and my sister was an unpleasant enigma, to both me and my father. She stuck fast to my mother, and my mother favored her to the point that both sets of grandparents were critical. But my mother and sister both had the sense to hide from him.

Me? I ran to him. Every time. So mine were the black eyes, mine was the eternal role of disappointing him. And being told about it. It was I who unwittingly took him up on his countless questions, ‘Do you want something to cry about?’ ‘Why are you acting like a spoiled little girl?’ ‘Are you looking for something to be afraid of?’

Some smart kid, huh?

There is a lot more, of course. A lot more. But I’m going to stop here. This is more of a start than I thought possible, but hopefully less than will give me a week-long meltdown.

A Klutz on a Tightrope

Because I rarely wear a tinfoil hat, because I am possessed of a certain ability to manipulate words, I have brief ability to pass as being somewhat mentally stable. That is a fairly mixed blessing.

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The past week or so has been a perfect example.

I deeply cleaned my room (it was disgusting) and enlisted my long-suffering partner to help me move all of the heavy furniture.  On just that information, it sounds rational. If you also add in that I can now see out of a window instead of looking into a darkened corner, it could pass as a step in the right direction. It sounds like a rational, mentally healthy choice.

But they don’t classify schizophrenia as a thinking disorder for no reason.

My awesome view out the window is of the very close wall of my neighbor’s house, and I get the benefit of seeing the starlings walking around on top of the window air conditioner. These birds give me the creeps. So I promptly added a light-blocking insulated opaque shade behind the portieres. Now I just hear the starlings walking around on the air conditioner, so I ‘have to’ go look at them repeatedly.

Moving furniture into a more dissatisfying configuration is not a symptom of mental illness; rather, it seems part of the human condition. In Pittsburgh, it seems to be even more so. These funny old houses have nothing but odd shaped rooms.

The other fact of my remodelling is a bit more daft. The vent for the central air conditioning now is poised to shoot right under my headboard, and arctic blast the top of my bed. Really, only a crazy person would have put their bed in front of this taste of Siberia.

There is a window air conditioner as well as central air in here because the previous configuration of furniture required a huge dresser to block the central ac vent. And I’m menopausal. With hot flashes. In a modern house, I could just close the central ac vent and use the window unit. But this is the Mad House. The vent in question is one of those huge ornamental vents, lacking those modern clever levers.

So I’m black and blue and sore. And I guess I have to move it all again.

Still, I did something. So, that might count as progress. But it doesn’t.

I thought I had a doctors appointment today. Unfortunately, I had a doctor’s appointment yesterday. More unfortunately, I was not at that appointment. This is not going to put me in a good position to try to convince the doctor that trying life without meds has some potential.

So, I’ve spent the past 18 hours flipping out in a very quiet way. This means that I’ve spent a huge sum of time picking and digging at my skin. I’m all welted and bloody. I’ve chewed the hell out of my lips and tongue. And in a little less than an hour, I need to call the doctor’s office to try to reschedule. Rationally, I know they are going to charge me a missed appointment fee that I can’t afford, and reschedule the appointment.

That rational understanding of what is going to happen has been hiding in the back of my mental junk drawer for hours. I really think my doctor is going to dump me over this. I’m not handling that thought very well. In fact, even though it looks like there has been positive progress in the past week, it is actually a frantic version of the flight part of fight or flight.

A little over a week ago, I had what seemed like a brilliant idea.  I decided to privately try journalling my earliest memories of the voices. Just a private exercise to gain some clarity. The voices didn’t care for that at all. I’m not thinking very clearly. This leads to moving my bed into the Siberian wilderness of the air conditioning vent, blacking out the window that I moved the bed so I could see out of, and missing a doctor’s appointment.

I’ve also accidentally tasted the dishwater a couple times from thinking about checking the seasoning of dinner while doing dishes.

Optimism concerning life without meds is quite low right now.

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Losing It

Schizophrenia, I am convinced, behaves like a virus.

It eats life, shits terror, and its multitude of offspring become hallucinations and delusions. Schizophrenia thrives in darkness and solitude. It will undermine every relationship, it will systematically break every light source. It is constantly evolving, and always one step ahead.

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And I really wanted to wait a while to write this post.

But you don’t always get to pick. But, note, I wanted to wait. 

For many schizophrenics the pressures of the condition become unbearable. Many become substance abusers. Many become abusers. Many become things that they never wished to be. As the dark gets darker, and the fear gets louder and louder that great survival instinct called ‘fight or flight’ kicks in. At these points, many schizophrenics flee.

Never mind family, friends, and whatever vestiges of support they have managed to retain. They just begin running. And a lot of them become homeless, lost, unable to find any road back.

And, if you have ever been in a city, you have seen them.

I won’t conjecture what you think or feel if you see them. I feel envy. The sickest parts of me really truly yearn for that; the homelessness, the lost-ness, the free-fall that can only occur if you have moved beyond the boundaries of society completely. I have never doubted that being homeless was a very real destiny. Not in my case anyway.

Truly, I wanted to put this off. It seemed that if I could wait to say this until even a few more people were reading this, that perhaps people might be moved to help. But it is not my choice. Usually it is entirely my choice, but this is running through me like a tornado, and the dust will not settle until I set it free.

Schizophrenia is the most selfish impulse, the greediest, most gluttonous destructive thing I’ve ever met.

Selfish enough to destroy not just the schizophrenic, but their family, their friends. Because when the schizophrenic bolts from normalcy completely, those family members, those friends don’t get to bolt, too. They must remain where they are, and somehow carry on.

We have no models of correct behavior in such circumstances. Comforting someone when their family member has literally ‘flown the coop’ is not covered by Miss Manners.  However, our inability to help, or speak appropriately does not diminish their loss, their suffering.

As for the schizophrenic out on the streets, how they feel probably changes by the second.

The reality is, that schizophrenia breaks the social fabric, and despite all that logic, wisdom and experience dictates, hope keeps flooding into those breaks.

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I know better than to give in to hope. I know better than to give in to despair, either. However, somewhere between unbridled hope and unchecked despair lies the ideal of ‘right action’.

I get hung up on Right Action. My personal credo has always been, ‘she who has a good idea is bound/doomed to implement it.’  And I do have an idea. But I lack any idea of how it might be implemented.

The saddest news is that I don’t think there is any hope of legislating a better mental health system. I don’t think there is any hope of legislating a better network of social outreach for the homeless and particularly, for the mentally ill homeless.

But this is not 1930. We do have tools. I think that there should be a website. Where the average person could put up a brief post about a homeless person they encountered. Like “Saw John S. from Wheeling, WV; he is ok” where families could log in and maybe see that someone took a moment to listen to a homeless person, and post, where they might even make a small connection with their loved one.

I’m sure there are a bunch of legal issues, and technical issues. Both of these aspects evade me. But I do think it is possible.

I know walls don’t solve much, and I know that bridges are both costly and complicated to build. But more than that, I know that it is better to light a single candle than to sit and curse the darkness.