Recovery is Posssible, Don’t Give Up

Chronic illness, mental illness, an illness which endures is indescribable. It’s made up of pain which cannot be fully understood without actually experiencing it. People with illnesses and injuries, people like myself, aren’t placated into inaction. It’s not as if we don’t strive for the same things you do. It’s not as if we don’t want to excel. It’s that, to no fault of our own, one day we were thrust into a world inept to meet our challenges. This world wasn’t designed for us. The dreams we once had are dashed when we are told what we won’t ever be able to do again.

After my diagnosis of Schizophrenia, it was a death sentence. I’d never do anything worthwhile for the rest of my life. Called ‘profoundly disabled’. It was suggested that I live in a group home until I might end up in the hospital for a long-term stay. But almost four years later I’ve bought my own house and work part-time. I’m a student about to embark on a four-year program to a masters degree. I’m a published author and advocate for other people with psychotic disorders.

I’ve come so much further than any doctor would’ve dare predict. I am not afraid and in fact, I feel powerful. Like I have power over myself and a mind which doesn’t have my best interest at heart. Battles waged against ourselves are often the scariest. And certainly, they are the most difficult. But, when we face ourselves we experience a transformative journey. One which spurs us onward to wellness. That journey wasn’t easy for me and at times I lost myself. Those closest to me, those who were with me at my worst, know that at times I came close to losing the light. But I’m here now and ready to help those who find themselves on the edge like I once did. People with Schizophrenia are told there is no recovery. But I beg to differ. Hard work, harder work than you’ve ever done before, determination, and support dictates your own journey. Everybody’s recovery may look different in the end. But what’s most important is that you didn’t give up. Even when your symptoms were at their worst. And that you pushed yourself as hard as you possibly could.

The message here isn’t just, “don’t give up!” It’s, “recovery is possible, don’t lose hope.”

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Common Device May Lead to Inexpensive and Accessible Test for Schizophrenia

People with Schizophrenia may have reduced electrical activity in the retina. Doctors have now begun testing this theory and it’s proving to be true. The RETeval is a handheld device used to record electrical activity from the retina. When testing patients experiencing acute psychosis, as compared to those who are experiencing none, the RETeval is allowing doctors to diagnose Schizophrenia. A test like this, which is both non-invasive and fast, could lead to a quick method for diagnosing psychosis. Something so simple would also be more affordable and fast acting. Allowing those in the most critical care access to the benefits of early intervention.
And while biomarkers in the eyes is a new way to look at psychiatric disorders, it is a promising one. Many people who have Schizophrenia often face years of psychosis and profound disability before a diagnosis. And for some waiting years after the onset makes treatment difficult or even ineffective. More seriously, many people living with undiagnosed Schizophrenia will die by suicide. Schizophrenia is the second most deadly mental illness and has the highest rates of suicide. Nearly one in ten people diagnosed will die by suicide, more than that will attempt. You can see why early intervention is a critical factor in the life expectancy of some with this disease.
Though the RETeval isn’t going to become a diagnostic tool any time too soon. It does promise hope for an accessible, affordable, and quick solution to the current layover time from onset to diagnosis.

 

Docia L. Demmin, Quentin Davis, Matthew Roche, Steven M. Silverstein. Electroretinographic anomalies in schizophrenia.. Journal of Abnormal Psychology, 2018; 127(4): DOI: 10.1037/abn0000347

Rutgers University. (2018, May 30). Promise of faster, more accessible schizophrenia diagnosis: Researchers explore eye function in schizophrenia as a window into the brain. Science Daily. Retrieved June 30, 2018 from:

wwww.sciencedaily.com/releases/2018/180530113131.htm

Back to School With Schizophrenia

Am I scared to return to school with Schizophrenia and Bipolar Disorder? I’d like to say no. I’d like to say I’m not terrified. For me, my first college experience was populated by hospitalizations. And steeped in constant instability. Which is why I left. I needed to get better and I wasn’t going to if I stayed in school. My expectations were set too high and with every failure, I sank lower. There was a period, close to the end of my time at my school, that I was missing weeks of classes at a time. It got so bad in fact that the school actually had a meeting, or intervention, to discuss my health. I was present and actually shaking under the scrutiny.

Understandably I had been rotting away in my dorm room. I had not been keeping clean, not attending class, and not feeding myself.  Holding me hostage was an undiagnosed case of Bipolar and Schizoaffective Disorder. Along with a rare case of Conversion Disorder that left me unable to walk. So college ended for me in a hospitalization. Then a five-hour long evaluation. And finally the long-awaited diagnosis of one of the more serious mental illnesses: Schizoaffective Disorder. The unholy union of Bipolar One and Schizophrenia.

My doctor put me on a max dose of Seroquel, an antipsychotic. And a heavy dose of antidepressant. Followed by some other medications. I took the time to recover physically. And then with the help of my still partner, we got an apartment. I went for another try of school but in the end, we left the area and embarked on the hardest year of our lives. Myself recovering from Schizoaffective Disorder and him battling his own depressive disorder. Jobs were very hard to come by and we lived off seven-hundred and thirty-five dollars a month. Each of us had our own sleepless nights.

But in the end, we’ve come out on top. We’ve bought a house, a car, and he is approaching a career. So, I’ve decided to go back to school. In the wake of hardship, I’ve grown hardy. Understanding that I am able to fight in even the hardest of situations. A flower unwilling to wilt even in frost. So what am I doing to protect myself as I prepare myself my return in the fall?

First, I am taking the time to begin making lists now. Deciding what it is that I will need to manage my health conditions on campus. Things like medication organizers, and medical id bracelets. Apps which help me to manage multiple aspects of illness. Notebooks which aid in organization and note-taking to help with my cognitive symptoms. A good planner. And a backpack that won’t increase my chronic back pain.

Over the summer I plan on studying my schedule and learning it ahead of time. I will be notifying my professors and the school of my mental and physical health conditions. It’s better they know ahead of time even if it never makes a difference. After my experiences, and being aware of the stigma that surrounds Schizophrenia, I have decided to be open about it. That is the best policy (at least for me). Schizophrenia ISN’T the death sentence it was once believed to be.

With proper management and support, Schizophrenics can recover. We can return to functioning in our personal lives. And functioning in the community. Of course, Schizophrenia is a spectrum much like Autism is a spectrum. Even if Schizoaffective Disorder is on the more serious end of both the Bipolar Disorder and Schizophrenia spectrum. With energy and time, recovery is achievable. Even if Schizoaffective Disorder is life-long, it is still a life worth living.

Another important aspect of my return to school is that it’s a new school altogether. No reminders of my darkest journey with every step. No reminders of my suicide attempts by being on campus alone. I’ll never have to return to the emergency room that traumatized me. By starting on a new campus at a new school it’s a new beginning. And that’s important. It may be one of the single most important aspects for me.

So, by knowing what I need ahead of time. By preparing for classes with enough time. And by notifying my new school of my disabilities I am taking the stress out of a new experience. By being honest and open I am creating a positive relationship with this experience. I am encouraging the continuation of my recovery. I’m scared to return to school and to academic life. There is some doubt but in the shadow of hard work and treatment and support. I’m not afraid to say that I am disabled. I am not afraid to say that I am a Schizophrenic. And I am not afraid to say that I’m in recovery.

The only thing that I am afraid to say is that I gave up.

 

Midnight and Momentary

Fifteen-minute wellness checks are to guarantee you won’t hang yourself with your blanket. Everybody gets them, all night long. Nurses walk the halls, spectral energies trapped in tired bodies. Trained eyes lolling in trained skulls. Not predators but prey. Cats and canaries, if not queens then mercenaries. Nurses like hawks circling with rays of light. Every room, every fifteen minutes.

Even as I lay on the hard bed, eyes shut against the dark, the nurses came and went. My door opened from the hall and shut again. Light creeping up my torso and then sliding away like a yellow-bellied snake. There and gone. I’m not a deep sleeper so light the woke me as I rolled between fifteen-minute intervals of sleep. As my door opened again it brought with it a cloud of cold air that met the warm air of my bedroom like oil meeting water. I pulled my blanket over my face and rolled onto my other side, away from the door. I hated the nurses and the medication (which I would often spit into the sink). I hated the monotony of the psychiatric hospital.  The same things day in and out, only clothed in different names. CBT group and DBT group. Art therapy. Individual counseling and casework. Medication and meals. Sleep, and hygiene. As you can imagine the days fell together like a house built on a bad frame. The nights one long night.

I shut my eyes and rolled onto my other side, peering out into the dusty, bone dry parking lot. A cold wind blew white heaps of snow around what cars remained parked there. With daylight, more cars would come. More doctors and dayshift nurses. People would arrive and leave like the ocean ebbing between low and high tide. Not me though. I wasn’t going anywhere. College would roll on without me and life would continue outside the hospital.

Wellness checks where growing more tedious. Tomorrow heralded more treatment and a medication change. I sighed and threw the crook of my elbow over my eyes. I didn’t want to be here another couple weeks. I bit my lips, drawing blood. Then, as I felt sleep creeping up on me the door opened again and a face peered in on me. She’s still alive in there. The voices started. She’s still alive. Alive. Alive. But she doesn’t want to be. She wants to die. We want her to die. We want her to suffer. She’s lying in bed, she’s always lying there. No good piece of shit. She wanted help and look where that got her. Those voices went on forever it seemed like. Background noise sometimes. Screaming sometimes. Other times they were quiet whispers rising like bread dough at the back of my head. Telling me which way to look and when to do it. Telling me to kill myself, that I was worthless, that the people were watching, that the radio could read my mind. That last one was a big issue for me for a long time. I hated the radio, especially when it was speaking to me. Its radio voice nagging and loud.

The light from the hall lingered a while longer before the door was half closed. I yelled for the nurse to leave me alone. As she left I heard a chattering bird dialogue of two nurses in the hall, one male and one female. A midnight and momentary admittance was arriving. The nurses were not to remove his restraints. I thought back to my own admittance. Cowering apathetically beneath a tan Egyptian cotton throw. Arms restrained to the stretcher I was brought in on. My legs, unrestrained, were brought inward against my chest.

The sleeping medication they’d given me had worn off hours ago. And with the nurses chatting outside my door I wouldn’t get much sleep. My frustration mounting I forced my eyes shut.

But then I felt my mouth run dry when I heard the male nurse whisper, “…he killed his parents…” a lingering pause, “said it was the devil’s work.” Frustration traded instantly for anxiety, “Found him covered in his parent’s blood.”

A female voice now, “If you ask me, all the people who come here are fucking psychos. They should all be committed.”

My fast pulse rattled dangerously like a broken machine and I felt a hot bunch of tears starting. I was the youngest crazy kid on the adult psychiatric ward after all. And according to many, I held the greatest potential for violence. Was I destined to fall victim to mental illness stigma? Could I show up one night covered in the blood of someone I loved? Would my psychosis and irrationality get the best of me? Was it was only a matter of time. Of course, I know now that those things are untrue. But at the time these thoughts accompanied by voices had my head full enough to explode.

In a silent rage, I brought the pillow above my head over my face and screamed into. Emptying my lungs and then my throat, leaving my respiratory tract scratched and raw. I had many more hospitalizations ahead of me. But I couldn’t have known that. I couldn’t have known all the sad music views I’d seen from my hospital windows, all the sad music scenes I’d see, all the sad music medicine I’d take before I found the one that worked…

As I went in for a second scream there was a commotion in the hall. The sound of a stretcher, a sound I’d never forget, rattling down the hall. Its thin wheels sounded like dry skeleton bones on clean hospital lelonium. My next fifteen-minute wellness check came just as the stretcher made it’s way past my door. And in the hall, I saw a man pass by. His hands, though tightly bound, were clean hands. Maine hands. His face empty, eyes empty. A lost look plastered on him like a missing person’s ad. And as the entire stretcher passed my door I didn’t see a single drop of blood.

These would be the days I’d be reminded of later. My life looking like floating wreckage on the sea of Schizoaffective Disorder. Hallucinations, even on medication, are still present. At night noises of people circling the house. Distant footfalls and jawing of male voices. They almost sound like animals. Almost like… predators circling prey. I lay in bed feeling like a carcass strewn across a field. Their voices a breath away, just beyond the curtains and wooden walls of my home. The crackling of leaves is all it takes to launch me into paranoia. I choke down my nighttime dose with a half glass of water, press my lips together and listen harder. Two footsteps now. A branch cracking leaves crumbling into pieces as they’re pressed into the ground. Then silence. Their voices start up. I narrow my eyes in concentration I but still can’t understand them. I ask myself just as TS Eliot asked himself in The Wasteland, “…what is that noise…what is that noise now? What is the wind doing?” The noises dissipate as they round the corner but I know they’ll be back. I could follow them ’round and ’round our house if I wanted. Hours wasted to hallucinations.

But I won’t.

I slip into bed and soon. Before I have time to register it, there is morning light pushing through the black curtains and onto my face. My kitten urges me awake with a paw on my nose. Her tabby cat eyes still languid too. She yawns a big yawn and shows her teeth. We both lay unmoving for a while longer as she settles down again. After some time I look over to my husband. He’s sleeping next to me, face turned up in sleep. I reach above our head and turn on our heated blanket for him. Then I climb out of bed, body sore.

I take my morning dose with hot tea. Clutching the mug with both hands I try and ward off the cold Maine winter morning. I feed my cats and pull open the shades so that they can watch the bird feeders on the porch. It’s mostly chickadees these days. Though the occasional blue jay, cardinal, and woodpecker can be seen. I pick away at something for breakfast. Then, with a deep breath, I tell myself that I can deal with my illness today. I push the voices around like sticky bread dough, kneading them into submission. Then scraping them off my hands. They would, until my afternoon dose, continue to rise into a fat dough. And then I’d knead them down again.

I sit at my computer and urge the words to come. Unfortunately, most days the page stays blank. My fingers poised for no audience. I sigh and close the screen with one hand. With the other I hoist my youngest cat to my chest, kissing her between her ears. She purrs, her fame whirring like a small engine sat in the chest of her body. Her little gray form tucked up under my chin does my anxiety some good.

We stare out the window for a while together. She watches birds and I disassociate. My body and brain attached like a tin can telephone. I hang onto reality like my nervous system hanging from my brain stem. Chickadees sing outside, puffing up their chests against the cold.  I’ve been building myself up too, against illness and insanity. Learning to cope instead of breaking down. I’m doing this because I have to, or else this thing is going to kill me. And I don’t want to die. Not anymore anyway.

 

 

A Snowstorm

Trees here,

in winter’s grasp,

expand white on white until the darkness comes.

Pine and maple,

decades in the space between.

Beyond the window, trees lie torpid.

Twisting.

Bare.

Dusklight on my alabaster skin,

and within the hour a storm moves in,

so coats the sod in impassivity.

 

Silence settles,

and bones won’t rattle here.

Despite trees as gaunt as skeletons.

Even as the wind moves between them,

there is secrecy.  

 

Voices at the forest’s edge,

anesthetize and draw me in,

writing love letters on the surface of my skin.

 

As I tear away,

as the nighttime comes,

both bodies naked and infalling in the dark,

a sense of silence overwhelms,

as if noise could consume us whole.

 

There Is an Ancient Thing Inside of Me.

There are eighteen lives between my two cats. Yet I feel that I’ve Iived more. When will reality and reincarnation disunite? For many lifetimes have been lived inside this body.

Nine lives apiece for each cat which naps placid in winter sun.

Yet I have lived one thousand more.

My bones, old skeletons, rattle when I walk like wind through frozen trees.

Count to five.

Breathe.

There is an ancient thing inside of me.

Ghostly.

Sheet thing.

Tombstone skin.

There is an ancient thing inside of me.

A tiger behind a wall of glass.

Power strongly veiled by fear.

I’ve mistaken sleep for death again.

A cold sun dips below cold hills.

A fistful of nighttime pills.

This ancient thing inside of me is of my own commitment.

And even as it whispers, “you are a but a vision, absent…”

I am stronger than you think.

Antipsychotics Saved My Life.

I’ve lost my passion since starting Seroquel. The act of writing doesn’t fill me with energy like it used to. I’m not writing to free myself from that intangible thing. The intangible madness boiling over like a pot left on the stove unattended. The intangible Schizophrenia. The intangible Mania. The intangible Depression like a bundle of sheets, wet and heavy and cold, protecting me from the fire as it burned around me.

Or was it was another something that pushed me to write? Was it was writing itself? Either way, I’ve lost that fire now. I’m damp most days. Not depressed, not manic, not even happy sometimes.  Unfeeling, tamed. And while it’s a good thing, it scares me. Medication has felt a lot like a tree being pruned. I know it’s good but it feels wrong. Sometimes I miss being caught in the throes of psychosis. So bright and bold I ended up in the Er with doctors trying to hold me down. Sticking needles in my arms and slipping my wrists into restraints. I miss the enticing delirium. I miss the sugar taste of psychosis and how it made my brain feel like a honeycomb with bees buzzing inside. It’s hard to enjoy being well when being sick was the only thing I ever knew.

Antipsychotics turn you into a picture of what you used to be. A string of metaphors, tangled up like an old bundle of wires. You move from being yourself to being yourself on antipsychotics. Trying to leave your illness behind you like a fog which really never recedes. Remission always haunting you. A fear of getting sick again always at the back of your mind. Because mental illness isn’t like other illnesses, or it is but nobody thinks so.

 

psychotic disordersI remember what it was like to be in control, back before the voices started. Way back before the hallucinations. Before the menu of medications. Before these diagnoses and these labels that burn and burn and burn like hot coals on the soft soles of my feet. Schizoaffective Disorder is so stigmatized it feels like a death sentence. The awful combination of Schizophrenia and Bipolar Disorder, two already highly stigmatized disorders, Schizoaffective Disorder is the diagnosis for the unlucky few.  And while antipsychotics are a necessary treatment for such aggressive illness, and while I often complain about the side effects, the truth is antipsychotics saved my life. It’s been scary, becoming someone else. Not the person before Schizoaffective, and not the same person I was during my darkest days. I’m a new a person now. Someone who can think again, and sleep again, and breathe, and concentrate, and most importantly I’m someone how who can deny my hallucinations and delusions the power to control me.

Psychotic disorders can feel like a death sentence, but they don’t have to be.

But I’m talking in circles here.