3 Weeks, No Meds: checking in

Wow. Three weeks with no psych meds.

 

Three weeks of applied dysfunction in inaction. I’m not going to complain, though. While diligently taking all of my meds, I have been just as dysfunctional for the past 14 months. No forward progress, but no backward progress either. Stagnation is always highly attractive, I guess; or, at least I think so. I think that there is an aspect of stagnation in making beer, but I only think that. I don’t know a damn thing about making beer.

 

Physically, I am still crazy dizzy, and somewhat disoriented. A bit clumsier than normal, which is kind of sad because I’m fairly clumsy. I have not got anything to suggest that this is any worse than going off Effexor XR has been in the past. Mouth is dry (HAH! There’s a big surprise) I’m still twitchy and full of tics, and still chewing my tongue a lot. I am hoping that the twitches and tics will subside, but they are a known risk for several of the meds I have been on. Sometimes they go away in time, but sometimes they are quite permanent.

 

So, no physical surprises to report.

 

Not much mentally or emotionally either. In fact so far, the process is pretty boring. Largely, this is a pointless post. But I did promise some friends that I would keep them updated on the process. The process is boring. I am beginning to suspect that I have not actually entered the process yet. I think I have taken all of these pills so long that it is still going to be a bit of a wait before anything really changes. I still really do fear what those changes are going to be like. However, it is a really abstract fear-similar to being fearful of being bitten by a moray eel, which is fairly unlikely since I live in Pittsburgh and don’t go outside. Pretty sure that the bite of the moray would be the pits, but it is pretty irrelevant currently. (however, if I now have nightmares about being bitten by a moray, I’ll have no one but myself to blame)

Stigmata Moron

 

In a way, I feel a little bit let down that nothing has happened. For years, doctors have stressed how bad going off your medication can be. How sick you got, prone to violence, suicide, self-mutilation, how quitting these medications can lead to brain damage. The list of what would happen seemed endless. And I’ve certainly changed meds before and gotten the Hell transitions from it.  I was mentally ready to fight. The reality is feeling like you got worked up to enter a UFC fight, stepped into the ring and discovered that your opponent was a spoonful of runny instant mashed potatoes. Well, huh.

 

I assume that I won’t walk out of this without a struggle. And it is pretty certain that there are going to be some tough days, I won’t claim to be prepared, either. How the Hell do you prepare for something  utterly unknown or unpredictable?

 

So it goes on. Sitting still in my dark room. Just living the dream. Or it would be living the dream-if I was a portobello.

Welcome to the Mad House…

No, really.

From the street it looks sane enough, I suppose, an ordinary-looking house in this part of the world. Perhaps it is a bit shabby, but it fits the neighborhood.

And it is mine house. Not mine and the bank, just mine. Owning this house is supposed to make me feel proud, accomplished, and secure. And absolutely nothing could be further from the truth.

The man and I have been renters forever. We are used to the joys of a maintenance man. But, if you own a house, you don’t have the joys of the maintenance man. And this house sucks. Worse than sucks. It is old. It has what is marketed as character. (That is Real Estate Agent speak for ‘a bunch of shit doesn’t work and we will charge extra for it’)

Living in the Mad House is not particularly good for my mental instability. Some of what is wrong with the Mad House is downright terrifying.

We purchased the Mad House from a couple who lived in it for over 30 years. Their name was Wonders. I shit you not. Mr. & Mrs. Wonders. We did not know when we bought the house that he was a HAM radio enthusiast and amateur “inventor” and she was really a crazy cat lady. Those revelations unfolded over time.

Even crazy people know not to buy a cat lady’s house, but if you are not clear why, here are some of Mrs. Wonders’ contributions to my rapidly dwindling sanity:

*Cat urine soaked rags packed around pipes.

*People randomly showing up trying to foist off very sick and dying cats.

*A lot of damaged woodwork.

*A large collection of ugly and terrifying lawn tchotchkes. (Some are still regulars in my nightmares…too many staring googly eyes)

What you may not know is what you get if you buy a house from a HAM radio enthusiast/amateur inventor (and I use the term inventor very liberally-I actually mean hazard in shoes) Here are some of Mr. Wonders’ contributions to my downward spiral:

*An “invention” to prevent snow and ice from forming on the roof. This is festoons of wires all over the roof attached to timed switches. The gay festoons of wire heat up and melt the precipitation. Even I am not crazy enough to have evereverever turned this thing on. But even turned off, I fear it plans to burn down the Mad House.

*A staggering collection of wires on the outside of the house. (Neighbors report he had many antennas)

*An amazing collection of “home improvements” all made of ugly paneling and really huge drywall screws.

A large part of my flavor of schizophrenia is being scared to the point of immobility by completely ordinary things. The challenge here is that I am scared to the point of immobility by these fairly extraordinary things as well.

Then the Mad House has added some new things to terrify me into further immobility.

Such as:

*The kitchen floor is caving in. Actually collapsing. With large holes in it, and places where it is unsafe to stand.

*The shitswamp. Ah, let me tell you about the shitswamp. It used to be a basement. But it is now a Lovecraftian landscape, and aromascape. And there is no escape. Apparently, two marvelous things have taken place to grant us the privilege of tending this amazing ecosystem. First off, the main sewer pipe under the house has apparently caved in for the most part. And then, the previous owner, the genius “inventor” capped off the pipe the sewer needs to breathe. The plumber cheerfully told me that it would cost 7500. to fix this. Not bloody likely. I mean, if we had that kind of money, it would promptly go to the plumber. We don’t.

*The furnace. It is haunted. Or lazy. It only works when it feels like it. Which is not when it is cold. If it is cold, someone needs to venture into the aforementioned basement and flip the circuit breaker until the furnace decides to work. Or not. The furnace feels personal to me. It really works just fine when it is chilly, or cool, or even cold. But when it gets really cold, forget about it. The furnace is sentient. It is also a jaggoff.

devil furnace

 

So. Take a crazy person, and make this fun house their abode. See what happens. (They won’t get better!)

My partner is fairly unflappable. And he loves this house truly madly deeply. And, when we bought it, I loved it, too. I don’t love it so much now. Maybe I could love it if I wasn’t scared of all the ways I think it is trying to hurt me. Maybe I could love it if I was not terrified that the damned basement was going to get the house condemned as a health hazard.

But, as it stands, I do not love it. I fear it. And hiding from the house you live in is a tricky matter. But, for over a year, I have been basically hiding from my house. As coping strategies go, this is a lousy coping strategy, but it is what I have.

Many many days, I sort of envy the homeless.

 

Time Out.

There are actually things in the big world that annoy crazy people.

Tomorrow is International Day Against Homophobia and Transphobia. And, as always, holidays like this annoy me. These holidays should be obsolete. There is no reason for us to need a holiday to remind humans all over the world to quit hating other human beings. There is no reason to need these holidays.

But, reason aside, we need them. Shame on us, and all the Gods help us, we need these holidays.

How frikkin difficult is it to not hate another person because they choose to love, or Hell, simply to be?

It takes time, effort and energy to hate, to harm, to oppress. How much time for good works, good deeds would this weary old world have if we just stopped squandering all of our time in hatred and oppression?  Sad to say, but we would have a lot more time to do good things, if only we would stop doing evil things.

I’ve been crazy for so Goddam long that I’ve been on locked psych wards with people whose only mental illness was being gay, or trans. And putting them there was a hate crime.

Dear world, stop being cruel. Stop for just this one single minute, and see how easy it is to breathe, to be, to just calmly exist without trying to prevent anyone else from breathing, from being, from existing.

A long time ago, there was the “Gay Rights” movement. And, to me, that now sounds dated, funny and quaint. I don’t say it sounds funny to detract from any person who ever stood up as a member of that long-ago “Gay Rights” movement…but to point out how lonely Gay Rights sounds without rights for Lesbians, bisexuals, transgendered persons, or other queer persons represented. Because, over the years, that umbrella of Gay Rights has grown to include a lot of other folks who were treated horribly simply because they loved someone, or simply because they chose to live authentically as who they are.

GLBTQ persons around the world are not asking for anything particularly special, or even difficult. For the majority of humans, they are not asking that you do anything. At most, they are asking that you stop doing a few things. Like stop throwing rocks and insults at them. You know damn well your momma taught you not to throw rocks or mean words, entire world. So just stop already.

These people are asking of you nothing more, entire world, than to be treated like people, like human beings. Is that so much to ask really? Apparently, it is, because a lot of you still treat them wretchedly.

If it was in my power, I’d send everyone to their room for a time-out; to think about how you acted, and to think about how you would do better.

But, sending the entire world to its room far exceeds the scope of my practice.

So, entire world, instead, I’ll point out a quirky, difficult, inconvenient truth. These people who you feel weirdly entitled to deprive of their most basic rights? Yeah, them. They started out as the Gay Rights movement.

Call that oppressed, hated group G.

Soon they added the letter L, for the lesbians. So, hated oppressed group GL.

Then the bi-sexuals…GLB. And they rested briefly, but soon added T for trans-genders. GLBT.

In many places the letter Q has been added for ‘Queer’ to kinda make room for everyone who didn’t fit in one of the convenient pigeonholes above. GLBTQ. We now have accounted for 5 out of the 26 letters of our alphabet. It didn’t take centuries, or even decades to go from one letter to 5. At this rate, honestly, how long will it take before a letter is added to this group that includes your precious human-rights-denying-holier-than-thou-up-on-your-high-horse self?

Personally, I’m no math whiz, but anyway I consider this question, the answer comes back as ‘not very long.’

So, why not consider not oppressing these people. Or if you must oppress them (and I don’t think you must!) then oppress them for something more relevant than who they choose to love, more significant than how they choose to live closer to how they know they were created?

Because, you know, and I know, that there really is no phobia in homophobia, or in transphobia. It never was, and is not about phobia, or fear. It is about hate and repression. It is about getting your mean bone out and exercising it over someone for no good reason.

As long as we need a day to Internationally be Against Homophobia and Transphobia, then I’ll support us having tomorrow on the calendar. But if I wake up tomorrow, and this day is no longer necessary, I think I’ll have a parade.

On Fire

Firehand

So.

Schizophrenia. What does it even mean? First of all, let me be completely clear. I’m not a therapist, not a psychologist, not a psychiatrist, Hell, I’m probably not even an innocent bystander. So, I’m going to talk about “my” schizophrenia, not the illness, or group of illnesses we label as schizophrenia. Just what the Hell my problem is, or isn’t. The thing that everyone ‘knows’ is the problem. Everyone but me these days; I’m no longer entirely convinced that it is a problem.

I hear voices. Voices that other people can not hear. I’ve heard them as long as I can remember. In my sleep, when I’m awake. I always hear them. And there are quite a few. I’d guess there are about 12 actual voices most days. There are also a collection of noises, but we can talk about noises some other time. Right now, we can look at the voices that speak English. And how admitting to a doctor once that I heard them earned me my first (sadly, not my last) visit to the booby hatch.

Maybe things have changed a bit since I last risked going near anyone with the keys to the madhouse, but my last experience was that no matter how calmly, or rationally I explained that I heard voices, I was swiftly locked up. I was considered a danger to “myself, others, and society”. Wow. I’m powerful. If just sitting there doing absolutely nothing makes me a danger to society, imagine how dangerous I would be if I took a walk, or used the phone. But incarceration for mental illness is not like going to jail. You don’t get an attorney. You don’t get a phone call. You don’t have any Miranda Rights.

The question, for me, boils down to ‘Am I dangerous?’ It would be super cool in a James Bond way if I was, but unless you are phobic about being bored to death, I’m not much of a threat. At my lowest points, I have certainly been a danger to myself, but that’s about it.

There is one voice in particular that causes me to get locked up. It is a male voice, but not a terribly deep voice. And it has been with me a long long time. It just calmly tells me over and over to burn. down. my. house. The fact that I have never burned my house down, or ever even tried to burn my house down does not earn me any brownie points. Once I figured out that even discussing the burn the house down voice with doctors just got me locked away, I quit discussing it with them. Oh, and I explored every suggestion the doctors had about ‘curing’ the voice before I quit talking to them.

If you are ever starved for attention or excitement in your life, just tell a doctor that you hear voices. You’ll get a lifetime’s worth of excitement and attention in less than 10 minutes. Be warned though-I doubt you’ll like it.

Does that mean you should worry about me visiting your house? I highly doubt it. And for your added safety and convenience, if I feel at all shaky or weird, I don’t leave my house at all.

Being responsible about living with a disembodied pyromaniacal voice does not prevent you from being involuntarily committed. And it doesn’t net you those (to me) mythical 48- to 72- hour ‘observation commitments, either. My shortest commitment was 68 days, my longest was a bit over 11 months. Being in the hospital did not help the voices in the slightest. The only things I learned from my hospitalizations were how to color for hours in the name of therapy, and to lie like a two-dollar toupee about hearing voices. And, of course, I learned to mind my P’s and Q’s around doctors, social workers, and cops.

Along with the “burn the house down” voice there are others. One reads a seemingly endless grocery list. Both of my parents’ voices are there constantly reciting an endless litany of everything my parents ever said was wrong with me. One endlessly repeats “I will not chew gum in class” (To me it is the weirdest one-I’ve never chewed gum in any serious way…a few minutes when a plane takes off, rarely to get a horrible taste out of my mouth…but, even in school, I never really chewed gum) There are others that come and go. I have been treated to months of the Nasdaq and Nynex, I got about 10 months of Latin declensions, and a super annoying voice that recites the structures of the ear.

The voices are tedious. No doubt. And sometimes they are so loud that I can’t hear an actual person sitting next to me. I get headaches from them. I wish they would shut up. The desire to escape them has been behind several of my most successful suicide attempts. But mostly, they are irritating and sad.

But…do they really make me a danger to others? or to society, whatever that means? I don’t really think so. If I thought I was inherently dangerous, I would have remained in my medicated hyper-sedated state.

I’m getting wicked close to fifty years old. All I really want is to see for myself if the sun can shine on me in a way that I can understand it. All my life I’ve been in the shadows, and I just want to stand in the light. And, I solemnly swear that I’m not gonna burn down anybody’s house.

 

Poor decisions make the best stories

It is a brutal truth.

And I am the queen of poor decisions.  That has never actually been the goal, it just works out like that.

Who knows, really. This may be the grand daddy of all of my poor decisions. It certainly has all of the elements of stupid present and accounted for. Like every patient on psychiatric medication, I know that you are never ever supposed to stop taking your medication.

So, I stopped taking it all. I’m smart enough to taper it off by gradually decreasing the dosages. It took over a month. And, yes, I still feel pretty weird. My routine of swallowing my pills before sleeping is now all unhinged. I have NO idea how to go to sleep without that little ritual of swallowing pills. For over thirty years, I have swallowed pills, then gone to sleep.

Now, I just turn out the light and put my head down. And I lay there. Sleep is like a cheating husband. I know sleep is stretched out snoring away in some broad’s bed. But not this broad’s bed. It would be simple enough to get a sleeping pill. This is America, after all. Everyone I know has a prescription for sleeping pills. I could have a prescription for sleeping pills. But there are a few issues. First of all, I think pills and I need to see other people. And at the root, that is the only issue that matters.

I want to see if I can live without pills.

I need to know if schizophrenia is really the pathology I’ve been told it is. Or if I can live with it in a relatively normal way.

It is a generally accepted fact that there is no good way to live with untreated schizophrenia. I get that. And I am in no way trying to encourage anyone else to try this stunt. All of the evidence suggests that this is a terrible plan.

But, for me, viewing my schizophrenia as a pathology has not moved me closer to balance, health, or wellness. This model of being at war with the schizophrenia has done nothing but engendered a thirty year long civil war inside my head.

I have spent almost the entirety of the past 15 months in a darkened room. And even that has been a struggle. Through not working or having any health insurance, I have consigned both myself and my partner to an existence of grinding nightmarish poverty. Pac-man-like I have dutifully gobbled my pills. I went to the doctor. We have repeatedly bought psych meds instead of food. And the situation just continued to deteriorate.

So, yeah. It is a Bad Idea. I understand that.

But I am crazy. Not stupid.

How can this idea really be any worse than hiding from the world in a dark room swallowing drugs I can’t afford and watching my life dwindle into something so small and mean that no one would want it? I honestly had to wrestle that question for several months.

Frankly, I don’t think I have anything to lose by making this attempt. Not at this stage.

So, yeah. A bad idea, no doubt. But as far as my mental state goes, for the first time in over thirty years, this bad idea is MY bad idea.

I guess we can see what happens next.