tumblr_orabipYacQ1uatsebo1_540

18110645_1297248813727115_748983076_n (1)

What it’s like to Need Unmediated Medication

I didn’t know I was going to grow up to be Schizophrenic. I guess the warning signs were there. Depression, anxiety, self-harm, magical thinking, self-isolation, and poor social skills. A preoccupation with death and a delusional fascination with religion. Even so, at eighteen and hardly an adult, the transition from neurotypical to Schizophrenic broke me. But then, no one plans on growing up to be sick. Young adulthood snatched away from me by madness and medication. Frequent psychiatric hospitalizations and a few suicide attempts dotted my calendar. Eventually, my illness changed from acute to chronic. Four years later and I’m twenty-two going on twenty-three. I’m a college dropout. I’m on disability. I take medication five times a day to function well enough to live on my own. But after all the medication I still hear voices all day every day. I can’t read, and I can hardly write.

These days I walk the line between Bipolar and Schizophrenic. I exist in a gray space called Schizoaffective. I spend most days at home with my two tabby cats, while my husband goes to work. I don’t feel young. I’m tired. I’m… sexless, achy, and confused. My brain feels like it’s full of sand. And my psychiatrist says that it’s normal, that it’s all normal. Normal for a Schizophrenic. It’s the anti-psychotics she says. She says that when my brain feels full of under-cooked bread that it’s normal too. And like so many, many Americans, I hate medication.

Or… I used to.

Because while it may have taken four years to find the right medication. I can say now that Seroquel has saved my life. I lost almost everything to Schizophrenia and then Schizoaffective Disorder. Nothing seemed sacred. Not family, not friends, not time or perspective, not school or reputation. Nothing.

The last thing to go was my faith, which I lost right around the same time I started anti-psychotics. In that way I was different I supposed, while most people find faith in dire times, mine was unredeemed. Which meant for me, and so many other Schizophrenics, that God was a chemical imbalance. A product of the over-pruning of the synapses in my brain. A product of delusions and hallucinations. Of my ill-equipped Schizophrenic brain trying to make sense of this tremendous epigram. This transition into a faithless existence happened slowly at first and then all at once. A building reversal in which I found myself back peddling. Scampering away from what had been a fascination with religion.

Yet with this new high dosage of antipsychotics, I felt a calming inside of myself. A settling of the churning psychotic debris. And although I wasn’t free of Schizoaffective Disorder, these days I am less of a slave to it.

So why do I still hate my medication? Why do I loathe my pills as I organize them into weekly and daily sections? Why do I frown as I set alarms to remember to take them? Without them, I would become an incoherent mess. The CDC says that almost fifty percent of us (48.7%) take at least one prescription drug. Strange that antidepressants are one of the most frequently prescribed medications. Yet, it seems like everyone condemns prescriptions for mental health conditions. “Big Pharma,” they say. “You don’t really need those meds.” “You could stand to come down a few milligrams.” “Aren’t you cured yet? After all those medications you take?” “Those meds turn you into someone else.” “Nobody needs antidepressants.” “Get out more.” “Exercise.” “Just be happy.” “It’s all in your head.” “Get over it.”

But to myself, I say “It’s not that easy…don’t you see…it’s not that easy.”

A patient cured is a customer lost…

Don’t you see it’s not that easy….

How can I practice acceptance and accept my antipsychotics in an age of pharmaceutical phobia? From the beginning of my journey with mental health medications, they were always bad. After all, how could I be myself if my medications changed the way my brain worked?

But it’s not that easy. You don’t get to see what an unmedicated Schizophrenic looks like. Unless you’re the one who is going to drive me to the ER in the middle of the night. Unless you’re the one calling 911 because I’ve stopped making sense and I’ve told you I’m going to kill myself. Most people haven’t seen me hiding in the closet. Covering the windows. Tearing apart my living space looking for hidden cameras. Most people haven’t heard me yelling about voices, or aliens, or the things that try and read my mind. You haven’t seen me restrained. Or in the back of a cop car. Or in the psych hospital with bandages covering my forearms. You haven’t seen me getting shots of Haloperidol in the middle of a psychotic episode. You weren’t there the first time I overdosed and you weren’t there the second time either. Few people I’ve let see this side of me… and because you haven’t I’m going to venture to say that you don’t understand.

So, to the people who think that ‘Big Pharma’ does nothing more than create customers, you forget the lives it saves.

You forget that it saved my life.

Though maybe you didn’t forget, maybe you just don’t know..

The Long Journey of Being Diagnosed with Schizoaffective Disorder

The thunder was pernicious. It was, as most people know, tossed together by warm and cold air colliding in the upper atmosphere. Summer lightning storms were like well-prepared dinner party hosts. The trees, unrestrained, whipped back and forth. By morning tree limbs will have broken from their trees. The river is also affected. Swelling up like an animal which feigned itself larger. Another bout of thunder that’s drawn out from a slow and sweet summer sky. Lightening. My orange cat curled at the foot of the bed, his head resting on my feet.

I’m torn between tired and fascinated. My nighttime antipsychotic dose leaving my eyelids heavy.  If I close my eyes I’m surely done. I fight sleep though because I love the way the lightning fills the room with light and then leaves it dark again. I feel Seroquel cloying at the back of my mind, “sleep, sleep, sleep,” it says.

I can remember a time when I could’ve stayed up all night long. I can remember a different me. I can remember standing quietly in my hot, post-shower bathroom. Hands grasping the sides of the porcelain sink, thinking, “What’s wrong with me? These voices, these thoughts, these scars along my arms? What is all this goddamn noise in my head about?”

I remember when I started pulling out my own hair. But oh no, soon people would see! So, logically I shaved my entire head and blamed it on too much hair dye. People said, “Wow you’re so brave you shaved your head!” I wanted to say, “No no, it’s not like that at all!” But by saying it was in good fun was, by nature, it’s own diversion.

I still can remember how the paranoia began, wriggling into the back of my mind like a fat parasite. Planting disquieting delusions as if I were some dirty garden to just be filled up willy nilly. The delusions worsened. I rode the swell of mania. Checked myself into the hospitals and fought my own denied release. Emptied my bank account and couldn’t remember what I used the money for. Lost days and days worth of time. Took too much of my medication and then didn’t take any at all.

I can still remember how, when I started getting sick, I expected that I was dying. That after all the MRIs I expected that they were going to say, “Okay, you’ve got a tumor in your brain.” And the hallucinations were going to have a reason. The monsters I saw and the voices and God and the Devil and my anti-social behavior weren’t going to be my fault. I was going to be allowed to die. I was going to be able to fix all the relationships I’d ruined.

Instead, there was nothing obviously wrong with my body, even though I was sick. My brain looked more or less normal. So the next thing they tried was an EEG. And I thought, it’s okay, I’m going to have Epilepsy. Then the EEG came back normal too. All I heard was, “You’re normal. You’re normal. You’re healthy.”

This and that test came back normal. Spinal taps, neurological exams. And there I was, watching the list of possibilities becoming more and more narrow. Chronic psychosis quickly becoming the only possibility.

After four years of tests, imaging, and hospitals, my doctors said, “You’ve got Schizophrenia.”

I remember how ungodly still I sat before this last doctor. In fact, only part of me that reacted were my hands. I wrung them out like they were rags made of wet fabric. You know the same hard way you squeeze all the water out of the dishcloth before you call quits on the dishes? That’s how I felt. About ready to call it quits.

I knew I had it. I had known for years. The boa of psychosis had become a familiar tightness in my head.  I thought it was an awful waste of time and suffering to take so long to diagnose me. By this point, I was homeless and had ruined the majority of relationships with family. I’d tried to kill myself. I had been mistreated in hospitals and in school. I’d been through so much and after all this time I’d finally figured out what it was.

I can still remember sitting in that stiff chair asking, “What comes next?”

Her answer wasn’t important. She didn’t know what came next, not really. She wasn’t Schizophrenic. She was just the messenger and I was just a piece of news. The same as the other Schizophrenics she’d diagnosed.

“A group home maybe…”

I had a sob caught at the back of my throat. I thought that maybe if it had been cancer or Epilepsy or an infection or anything else I wouldn’t have been alone for this. Maybe I wouldn’t have been homeless, maybe I’d be happy, even if I was terrified. A group home…a group home….

“Medication….” she said.

I left the appointment feeling that my Schizophrenia was very much my own fault.  Medication.  A group home….what comes next? What comes next? What comes next?

As it turned out a blur of medication was what came next. An almost max dose of Seroquel. More hospitals. But illness is different now because nobody listens to me anymore. They just look at me and I know that they are all calling me crazy. I’m now a Schizophrenic after all. Even though in reality, I’m still the same nervous person. Still quiet. Still reserved. I still have same set of symptoms that doctors were once rushing to treat. Only now every symptom is blamed on Schizophrenia.  

Now they just dismiss me by stabbing shots of Haloperidol into my upper leg. Because now the Seroquel isn’t always enough. Now instead of praising me for keeping up with my schoolwork despite being sick, I am asked to leave. I’m unsafe now. Maladjusted. Now I’m considered the violent psychopath America fears. I’m a statistic. A Halloween costume. A movie villain. I’m not a person anymore. I’m just a thing that needs to be medicated so that nobody has to see or hear me. I’m the thing that people agree needs to be locked up, hidden away. I’m a thing now. And people say, “Oh God, keep that thing under control. Keep it medicated. Keep it away…Oh God, Oh God.”

At my worst, I could hear the thoughts of people around me. Scary thoughts, painful thoughts which induced incredible paranoia. Spies following me wherever I went. I was sure I was being abducted by aliens that wanted to control my mind. I suspected some huge conspiracy that I couldn’t name. I tore apart my dorm single in the grip of a desperate search for a bug. I was convinced that it had been planted in there to spy on me. I cried. I felt alone. I was scared of myself. Scared that I couldn’t resolve this unraveling life of mine.

I don’t need help, I need help, please God someone help me. Don’t touch me! There’s nothing wrong with me! Something’s wrong with me! Oh God, what’s wrong with me!?

My thoughts were so fast I didn’t have time to think them. I began drowning in the riptide of depressive episodes. Made attempts on my own life. My medication left my brain feeling full of sand. I couldn’t think straight.

The hardest parts though were the fleeting moments of introspection. In these moments, I found myself aware that I was losing this battle. So for me, Schizophrenia soon became a degenerative experience. That’s the difference between Schizophrenia and other illnesses. Schizophrenia is a disease that we are expected to fight alone.

A clap of thunder suddenly, much louder than the rest, roused me from my thoughts.  

My cat is woken up too. He stretches his way up my legs and midsection. Purring onto my chest, and collapsing in a sleepy heap of orange creamsicle fur. I shook off the dust of late night, thought induced depression. And I quietly remind myself that everything is OK. I remind myself of how it’s been over a year since a hospital admittance. About how my medications are working. I tell myself that my illness is even more pinned down now. My Schizoaffective Bipolar type squirming like an insect pinned down under a microscope. I’m able to learn more and more about this illness every day. I remind myself that everything is OK. That I am OK. That I am not alone. That things really do get better. I press my thin lips together and push the voices back, focusing on the quiet breathing of my cat. Then on the breathing of my husband, curled fully into some dream beside me. His face pressed into the pillow. I focus on his breathing and then, finally my own.

My cat lets out a long sigh and some of my anxiety is dismissed. I watch as my cat gives into sleep. And after I close my eyes, I can’t help but follow suit, my brain giving way to a Seroquel-induced sleep. One more clap of thunder and I’m nearly there. Schizoaffective Disorder makes me so very tired and without warning manic again. I’m always trying to sleep. One second a great lumbering, hibernating bear, the next a hummingbird with two heartbeats and a mouth full of language.

 

The ways Psychosis makes my Brain Feel

1. It makes my head feel nearly full with voices. I’ve got to do everything slowly so as not to spill any of them over the top of my head like water. Breathe slow, sleep slow, move slow, walk slow, think slow.

2. It makes my head feel full of with bugs. It makes me need to hold my scalp down with my hands. But every once in a while they get by my fingers and I have to pull them out of my hair, their legs catching in the knots I don’t brush out. I don’t tell anyone when this happens instead, I just flush them down the toilet.

3. It makes my head feel chock full of sand. On those days I’m weighed down by the ocean that surrounds the beaches of my brain, so I don’t get out of bed.

4. It sometimes leaves cobwebs. They are stretched between my thoughts like thread. This makes it hard to come to new conclusions, hard make healthy decisions. These are the days that self-destruction visits, taking advantage of its own spiderweb design.

5. And sometimes it fills my skull full of flashing lights. Strobes erupting surreally in my head. When this happens it makes my arms feel disconnected from my body. Forcing my hands to work on their own. In this space I have no legs at all, just a brain attached to my body like a string, two tin cans on either end. My face isn’t familiar, my skin is alien and nothing feels real.