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

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. 

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.