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.

 

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Fast and Without Too Much Sadness

   Red curtains move in the wind of an open window. Warm wind then, on warm sunlight, peers through. Long sunlight fingers push aside the air. Dust floats. My cats like to lay in this type of sun and I like to sit with them, letting my socks get warm and warm my feet. Outside there are bugs and branches and leaves turning red. The play-dough scent of apple branches being pruned from their trunks evaporates around me even as I write. The smell of hardwood. The smell of sweet apple flesh and hazelnut candles. Pine trees at the top of the yard are green and settle their stout bodies against the cooling topsoil. People lean on one another in the face of gathering winter. For now, it’s still autumn. For now, we still have to use all our apples up and fix the snowblower and stitch our jeans and prepare the house for colder weather.

   The days grow shorter and darker and before we know it snow will arrive and we will be buried up to our necks in it. The cats will stop shedding and pack on some winter weight.

   The weather allows for hot showers now and I take ones that border on the cusp of being too hot. When I shower I do it at night with the lights off. Letting the water rinse the coffee grinds and chewed nails and dried skin away.

   Odd to think that I still don’t know myself. After all this time alone we never became acquainted. I am an introvert afraid of other people. This includes me.

   When I look in the mirror I don’t see myself anymore. I see a self made new by flesh. By antipsychotics and antidepressants. By new scars and new wrinkles and new stretch marks. I see a new body and a new brain. But I don’t see myself.

   It’s hard, having been so many things. Flashes of an aging young adult who never got to know herself. I was a kid once. A kid who always kept my hair cut short. A kid who needed braces but never got them. Once upon a time, I was a tomboy. An arm wrestler in the fifth grade who could beat the boys. For a while, I was a confused preteen. Baggy pants and tight shirts. A teen who didn’t want to have sex. An anorexic. A kid who, while good reading books, was poor at reading people. I obsessed over spirituality and religion. Questioning everything to the point of insanity.  I was homeless. I was a runaway. I was unhealthy. Underweight. Sick. Bedridden. Paralyzed. Non-Epileptic (PNES). Dependant. A smoker, god forbid. Someone buying drugs in the back seat of a station wagon that wasn’t my own. Having sex without enjoyment. An all A’s student attempting suicide in the middle of the night. A self-harmer. A frequent flyer at the hospital. Psychotic. Manic. Depressive. Confused. Boney. Absent. Schizophrenic. Bipolar. Schizoaffective. Catatonic. A nighttime-midnight-in the dark-showerer. A nighttime-walker. Empty. Lost. Someone who wished they were dead but ended up happy to be alive (well most of the time.) A college dropout. I used to be someone who listened to the voices. Someone who followed the hallucinations.

   And then came the antipsychotics and all the things I’d ever been came fullstop. Now I’m soft and bitter and my brain is full of Seroquel soup. I’m caught between meds having saved my life and having destroyed it. Of course, I should say that Schizoaffective Disorder did the destroying. Sluggish waves with no force behind them turning my psychotic wheels. Caught between wanting recovery and wanting destruction. For being happy for new my health and being spiteful of it. Between being accepting of antipsychotics and believing the benefits to be disingenuous.

   Out of all the things I’ve ever been I’ve never known any of them for very long.

  I want to see that change but I can’t say I know for sure that they will. Of course, this year went by faster than apples are falling from their branches this autumn. If I close my eyes and hold my breath and take my meds perhaps another year will move on like this one did. Fast and without too much sadness.

 

   

 

 

The Hardest Lesson I ever Learned

It happened right in the middle of sex, the most terrifying event of my life. It started like an ache at the back of my mouth that stopped me in what I was doing. I’d never felt a pain like it in my life. And then my tongue contracted and in only a few seconds I couldn’t talk.

I sat up fast. The pain moving down my neck. I struggled into my clothes.

“Something’s wrong,” I gasped, managing somehow to get words past my cramped up tongue.

My fiance looked at me, not unjustly confused, “What is it?” An honest note of concern in his voice. He looked me over, “What is it?” He repeated.

“It. Hurts. I don’t. Know.” But this time when I spoke it came out garbled and unintelligible. It had barely been two minutes and already I couldn’t open my jaw. Then my neck contracted in what was close to the worst pain I’d ever felt. My head seemingly pulled back like an arrow on a bow, only no release, just mounting pain.

My joints all suddenly felt strung together by tight twine with no give. My muscles had turned to rocks.

I remember slowly arranging myself with my neck resting on the edge of our mattress. Attempting in a feeble way to prop my neck up to relieve the pain.

Then it rushed through my body, my hands curled up burning paper and my legs, bent at the knees, wouldn’t be unbent.

Time seemed to come apart, dissolving like salt in the intensity of my own fear. Was I having a stroke? I qualmed at the thought, surely I was too young to have a stroke. But I thought for sure I was going to die. Right on the wooden floor of my first apartment, curled inside of myself, a rigid skeleton. I hadn’t said goodbye to anyone. On my obituary, all it would say was: her death was certainly unexpected.

I think I waited like that for about an hour. And for that hour I was in the worst pain I’d ever experienced. Sweat gathering on my brow, fear like gauze wrapped around my ribcage. Breath coming too fast, and heart beating too quickly. Every part of my body, all my bones, and muscles and tendons, and vertebrae and hips, my feet and even the tongue my mouth and the brain in my skull, ached so terribly it made my eyes hot and I cried. I was going to die. Holy shit, I thought, this is it. And had I died right there, with my fiance crying in the other room afraid to show how scared he was too. With his mom speeding down the main road too fast trying to reach us. With my body exploding in protest to my immobility, I would’ve been thankful. That’s’ how horrible the pain was.

It’s crazy to think this traumatic event was all to blame on a doctor. One doctor in the emergency room who did a half-assed job and later wouldn’t take responsibility for it. The hardest lesson I ever learned was if the doctor had to give you Haloperidol, you’d better make damn sure they’re giving you a side of Cogentin to go with it.

When his mom showed up with his brother in tow I was whisked up from the floor and put in the front seat of her old green truck.

It was the fastest twelve miles I’d ever traveled. When we arrived at the emergency department she took me up in her own arms and carried me through the double sliding doors. Then she yelled something like, “We need some help here!”

I was so hot from all the pain I remember how nice the air felt on my face. I remember thinking I was happy that it would be one of the last things I ever got to feel. The cool autumn-in-Maine air, laced with distant wood-smoke and water.

They raced me to an examination room. Doctors poked and prodded me. Trying to figure out what was wrong. Then, then you’ll never guess what happened. In walks the same irresponsible doctor from the previous night. The guy who treated my psychotic episode with one huge shot of Haldol and had sent me home just hours later.

He said matter of factly, “She’s catatonic. Schizophrenic. Get her an antipsychotic and some Ativan. IV nurse.” Then he turned to me and said, a little too close,”If you keep coming back here we’re gonna have to hospitalize you. Do you want to go back to the hospital?”

I shook my head no. I was beyond frightened. My tongue at this point protruding from my mouth. And my limbs pulled completely, and involuntarily, inward. I was not unlike Gregor from Kafka’s The Metamorphosis, transformed into some huge bug. All my limbs turned in and dead-like, just the same as a bug with its insect appendages pulled across its chest.

Then the doctor left the room and my fiance and his brother finally met up with us. We waited for hours for me to come down from what was actually a dystonic reaction to Haldol. Something that patients experience when not given a Central Muscarinic Antagonist at the time of admission. My psychiatrist apologized later, even though it wasn’t her fault. I still have nightmares about that night and now fill out Haldol on my list of allergies. I’ve actually been too scared to go back to any ER for psychiatric emergencies. Which is a shame because if doctors treated people with chronic and mental illnesses like they treated everyone else, maybe they’d find us worth paying attention to.

 

 

The Short and Sweet Story of How My Childhood Cat Saved Me From Myself

I lined up all my pills as I poured them from the bottle. I straightened them out like moon phases. Waxing and waning green caps of Gabapentin all the way across the brown dorm room desk. There were a lot. I finished the note, signing shakily at the bottom. I folded it up and pressed it into the corner of the desk. And then I gathered all my courage and put one pill in my mouth. I swallowed it. So every pill became easier than the previous. At first a few and then more and more. I found myself shoving them into the corners of my mouth and crying out and swallowing too may gulps of water until I had spilled it all over myself. I was sobbing by the end. I took almost my entire bottle of Gabapentin and then, I began to shake. I tried very had to stay quiet. Hands pressed to my hot face, trying to hold the crying back. Thinking over and over that I was undeserving of this spectacle, of this life. I wondered how well this would work if I couldn’t manage to stay still? How long would it be until my liver began to metabolize the toxic dose I’d taken? I focused on my breathing. In and out and in and out and in and out. A cell phone clutched in my right hand now, knuckles white. My left hand on my chest, below my heart. An inconsistent madness settling at the back of my throat.

I tried to wait for death but I was too scared, too impatient for the silence.

“My nerves are bad tonight. Yes, bad. Stay with me.

“Speak to me. Why do you never speak. Speak.

“What are you thinking of? What thinking? What?

“I never know what you are thinking. Think.”

“I think we are in rats’ alley

Where the dead men lost their bones.”

I recall A Game of Chess. Next comes, The Fire Sermon. The Burial of the Dead. “April is the cruellest month, breeding/Lilacs out of the dead land, mixing/Memory and desire,/stirring/Dull roots with spring rain.”

My brain is twitching now, spasms at the bottom of my brain stem. My entire frame begins to tingle and it is then that I call for an ambulance. I don’t want this. I don’t. I don’t. I don’t. I fucked up. I started having a hard time breathing. The next part happened in pieces. Police appeared. Flinging back the door. Only to see me now, my left hand still near my heart my other now wrapped around a crinkled suicide note. My eyes, I imagine, filled with tremendous pupils.

“I don’t-” was all I could manage before falling to the ground like a sack of laundry.

Then it was the paramedic’s turn to arrive.

At some point, I pissed my pants.

After that, I don’t remember much.

I do I remember all the kids in the dorm looking at me as they carried me away. I should’ve thought about this part, even in my incoherence there is a sense of embarrassment. That nervous hot air pressed close to my face. My chest hurt. And I remember the bright insides of the ambulance. Tubes and wires and needles and cuffs and lots of nitrite gloves all bathed in argent light. Red, blue, and white flashes on my pale skin.

Then the hospital.

And then a nurse, “This could do some damage,” she said.

She seemed huge and looming. Like a taciturn giant at the foot of my bed. Her hands wrinkled and she wrung them together as if trying to squeeze water from them. Was she too a hallucination? Was nothing real anymore? Even the nurses were fake and huge like cartoon characters. Between the drug overdose and Schizophrenia, I knew very well that I couldn’t be sure of anything.

Then she checked my IV and was gone.

I lapsed into a deep sleep. And every second sleeping there was a sense of regret. I had strange dreams. Dreams of Christmas lights. Of dog-eared thrift store books, of dust settling in sunlight. Of my childhood cat somehow there with me, in the hospital, I could hear her purring but I couldn’t see her. I dreamt about hot coffee on cold mornings. Of second-hand baggy sweaters and used tennis shoes. I dreamt of silent snowfall and of deafening summer thunderstorms. I dreamt of cold and warm air colliding in the upper atmosphere. Of autumn and carving out the slippery insides of jack o’lanterns. Of pulling weeds and growing things. I dreamt of two incandescent bodies, one mine, after sex. I dreamt of street lights, and skeleton bones, and copper cups. I dreamt of cold river water and sharp river stones on the soles of my feet.

All the while a sense of urgency grew inside my stomach, pressing at me from the inside.

Why didn’t they pump my stomach?

I could feel my mistake growing at the back of my brain like a warm blanket pulled over my body. Sleep. Stay. Stay. I can see my cat now, stretching her way up my legs and midsection. Purring onto my chest and then collapsing into a sleepy heap of nighttime fur. Her gray body and white chin pressed to my face. I hadn’t seen her since I buried her under the lilac bush. I dreamt of lilacs, of pine trees, of sunflowers and of pinwheels spinning in the sun.

And then I woke up to a terrible pain in my head. I had an IV in my arm and oxygen pumping into my nose. I was wearing a hospital gown and no longer the pants I had ruined.

Everything was quiet and clear.

And all I could think of was my old cat, sleeping bony and ancient under that lilac tree. Some day we’d be fossils together, but for now, I just pulled on the restraints at my wrists and sighed quietly. I think about how she died, curled up under the window in our bathroom, and how my mother grabbed me by my shoulder to turn me away.  I’ve been an Atheist since then, knowing now that the only things we see at death are the memories we made while living.

I want to dedicate this post to my cat, Peanut, who taught me about dying and about living. I want to thank her for saving me from myself.

Night

But what else is there to do with this type of pain?

Give in?

Give up?

Certainly not.

Not while those with mental illnesses are still mistreated. Not while we are still killed by police who aren’t trained to handle situations of mental health crises. Not while more of us are in prisons receiving treatment than in hospitals. Not while treatment is so inaccessible. Not while mental illnesses are so misunderstood, and not while there is so much misinformation.

Not while we can’t talk about it.

And not while we can talk about it but don’t know what we’re talking about.

 

Saying Goodbye to the Affordable Care Act

I heard recently that an estimated 14 million people will lose their health care when the ACA is repealed. Now, that’s just an estimate, but I don’t think any reduction in the total could make this any better. The scariest part for me is that I might be among those 14 million people. As a poor Mainer, surviving off SSI only, which is just over 8,000$ annually, I qualify for MaineCare. (MaineCare is Medicaid) Not only to I qualify, but I rely very heavily on it. The cost of my medications alone is over 1500$ a month. That total excludes the cost of treatment, of possible ER trips, and possible psychiatric hospitalizations. Even if I could afford to pay for healthcare I could never, even with it, afford my current treatment.

Now according to an article published in the BBC just four days ago called Trump Health Bill: Winners and Losers, the people who will benefit most from the ACA repeal are the rich and the urban, along with young people paying for private insurance.

Unfortunately, I’m not any of those.

This is what the BBC had to say about the people who will get hit the hardest, (not shown here is the paragraph about the elderly who are included in the list of socioeconomic groups that will be most affected).

Poor: The new plan would roll back much of the provisions put in place to protect low-wage earners under Obamacare. It would mean significantly higher premiums and reduced tax credits for middle and low-income earners. It would end the expansion of Medicaid, which covers low-income people, and overhaul the entire programme. States would be sent a fixed amount of money per Medicaid enrolee, also called a “per-capita cap”. The additional federal funding that covered expanding Medicaid would be eliminated by 2020, leaving states to bear the responsibility of making up the difference in money. States could then reduce eligibility or cut provider payments. Enrolees making around $20,000 a year at any age would be hit the hardest, according to Kaiser.

Rural: Another group that would lose under AHCA is people living in rural areas, where the cost of coverage tends to be higher due to fewer hospitals and insurers. Research shows that health insurance premiums are typically more costly in rural counties and states. Rural residents also rely more heavily on public insurance than those living in cities. While Obamacare took local healthcare costs into consideration, tax credits under the Republican plan are the same as in states like Alaska and New York. If premiums grow faster than inflation over time, the proposed tax credits will grow more slowly than those under Obamacare, according to Kaiser. Medicaid cuts could also be harmful to rural hospitals, which are already struggling to keep their doors open.

On top of all of this when the ACA is repealed, as I am pretty sure it will be, Trump’s administration’s plans to cut funding to mental health and substance abuse treatment. According to this article by Psych Central, “in 2020, the plan is to move away from open-ended entitlements in Medicaid and switch to a per-person allotment to the states. This eventual change would likely have a devastating impact on the people who are covered under Medicaid — generally the poorest American citizens. The cap per individual in 2020 would be based upon how much funding the state was receiving in 2016. This effectively means the states will be working with 4-year-old, insufficient budgets — all the while healthcare costs continue to climb.Worse things happen after 2020, too, especially if you have a mental illness or substance abuse problem and use Medicaid to get your treatment. Beginning in 2020, the proposed GOP plan would eliminate the current requirement that Medicaid cover basic mental-health and addiction services in states that expanded it. Instead, the feds will allow each state to decide whether to include those benefits in Medicaid plans. In order to keep their Medicaid costs down, many states would rollback such coverage.”

I’ll be blunt here: people are going to die.

And I could very well be one of those people.

I’m terrified. I’m so terrified last night I say in the bathroom and cried. I cried for the 14 million poor and elderly people who will lose their health care for no reason, and I cried for myself, who will most likely loose my health care and have to go off my medications and say goodbye to my mental health treatment. It’s almost unbelievable…no I take that back, it is unbelievable. It’s murder. It’s unethical.

The worst part about it is not being able to do anything. I just have to sit here until I lose my healthcare and then continue to sit around until I loose my mind.

People are going to die and nobody can do anything about it.