I’ve been fighting chronic health conditions for years.
Every day when I didn’t want to get up I knew I couldn’t give in. But it wasn’t always so easy for me. When the voices started I listened to them. When they told me to hide I hid. When they told me to stay in bed I pulled the pillow back over my head. When they told me that there was a higher power, unnamed though it was, that whispered when the wind blew, I prayed to the wind. When they told me I was a piece of shit I believed them. When they told me my medicine was poison I dumped them down the toilet. I ate when they said I could and didn’t eat when they wouldn’t let me. I counted the patterns in the colors of the cars that drove by me.
When they suggested I kill myself I gave it my best shot.
Now I’m glad I’m here, alive, breathing, thinking, writing and creating. I’m glad to see the sunrise and the wind doesn’t whisper like it used to.
I used to have visual hallucinations. More real than you in front of me. More real because that’s what my brain told me. So real that I felt their breath sometimes, felt their fingers on the back of my neck, saw their eyes move as they watched me. You can’t know what it’s like to hallucinate until you have.
My last visual hallucination was of an alien set upon reading my mind by sticking his fingers in my brain. That was three years ago. My brain’s last attempt at lying to my eyes. Though sometimes it still plays tricks and I see red cats out of the corner of my eye.
But the voices, they never stopped. They’ve been a constant part of my life for about five years now. It’s never quiet. There is never an instant of silence. It sounds like a beehive inside my head. Like a congested subway. Like a too full elevator. It sounds like panic and sadness and mania and anger. Some I can understand and some I can’t. Some sound like a radio in the other room. Some voices sound like voices sound. Some sound like dull hum of white noise. Some come from outside my head and make me turn around, scan the landscape or the crowd. There’s never a source, at least not one other than my own head.
Not to be confused with, “It’s all in your head.” One thing I’ve learned is to never let anyone get away with saying that. As if your brain isn’t part of your body. As if they don’t function as a whole. As if they don’t work together to create absolutely every experience you’ve ever had, every feeling you’ve never felt, every movement you’ve never made, any sound you’ve ever heard, every taste you ever tasted. You cannot have one without the other. The brain and body exist together, one thing that has one goal. When you are sad it’s the whole body that is sad, and when you cry it’s the whole body that cries. It’s the whole body that becomes tired. It’s the whole body which achieves happiness. It’s the whole body which becomes sick. You cannot have the oceans without the moon, or day without night, or spring without winter.
It’s with my entirety that I have Schizoaffective Disorder, it’s my entirety with which I fight. It’s my entirety with which I breathe. This how all things exist. With their entirety.
I’ve learned that my hallucinations are part of me. It’s who I am. Illness is a part of me. But life is a part of me too. Happiness is a part of me. And my body and my brain, they are me.
“It’s not all in my head.”
“It’s all of me.”
You cannot fight a war against yourself. Instead, you’ve got to learn to live with yourself. You’ve got to learn to be gentle with yourself. To let yourself breathe and sleep and wake and you’ve got to move and experience. But that’s all. If you can’t bare anything else today, just exist. Exist from where you are. Life can’t ask anything more from you.
Just exist and tomorrow try and exist a little bit more.
Trees burst with yellow, so dust to dust.
Maine sighs the last taste of summer from its mouth.
We bundle ourselves fast beneath our jackets and steel ourselves against the growing hum of winter weather. Rain threatens ice. We breathe fog into the cold air.
I am at peace during this time of year. Loose fitting sweaters hang placid from my frame, I can tuck a scarf beneath my chin. A hat pressed against my head. I am at home underneath big red maple trees. I like the stories New England hauntings read aloud from dog-eared books with broken bindings. I like sweet apple cider. Round pumpkins with funny grins appear on old porches. Chimneys exhale, their ragged and tired throats expel pale grey smoke. Boots clatter and children fetch their costumes, laughing into a dark night sky.
I think my voices like it too.
Whispering in awe at the beauty, they too steel themselves in anticipation, covering my brain in a soft blanket. Soon it will be winter.
Winter means depression. Or worsening depression anyway.
But right now it’s autumn and there are pumpkin pies and ghost stories to be had. A cozy night clasps in her hand’s hot chamomile tea.
She says, “drink up.” And I do. I sleep best this time of year. Buried beneath a mound of comforters the cool air slows my too fast heart.
“slow down,” says the cool autumn air, “slow down. Don’t miss this beauty.”
Standing at the base of an old maple tree, arms wrapped around her trunk my fingers cannot reach. A great, wide, trunk juts off into the sky. It’s lived three or four times the length of my own life. Each autumn she dies and in the spring she is reborn.
“look,” she mutters, her big branches shudder in the cold, “at my resiliency,” her leaves fall and pile at my feet, “I can show you how to be this way.”
Autumn is, after all, a practice in the acceptance of our own shortcomings.
“we all need time,” she whispers absently into the breeze, “to rest.”
All the pumpkins smile. A black cat, who is not mine, yawns on my porch and stretches to life. A big tom cat, who knows it too. He lets out a silly noise from between his teeth. Cats rest when they need it, which is often enough. Taking cat naps in the apricot autumn sunshine.
“winter is for resting,” says the nighttime, her body stretched across the sky.
“and in the spring,” thinks the cat, “we will stretch to life again.”
The cool air captivates me. It winds me down until I slow.
“winter is alright,” I say.
The cat agrees, and then purrs lazily, “don’t fear time for recuperation.”
The trees shift, “we couldn’t go on so long without it,” they say, their voices not unlike the wind. Talking all at once.
Bittersweet and rose and wine. Cherries and chestnuts. The colors this time of year are without names. Wordless colors tossed across treetops and tree-middles and all the way across mountain ranges which will soon be powdered in light, quiet snow. And against the blue sky leaf peepers gaze, and birds fly south, and squirrels gather acorns, and the resident porcupine steals corn cobs from the aged corn fields. Cobwebs gather and the furnace kicks on. Each morning grows colder. Hot soups in hot steamy kitchens are stirred. Ghosts come out at night and stand around their ghostly fires that burn the color of nothingness.
Everything is still except a lone buck that stands at the edge of the woods, hooves stamping in the dirt. Antlers like strong arms grow stronger with each exercise. He grunts and twists his head to look into the forest. A great silence beats the within it. Suddenly turns and runs against the winter wind. Dark eyes like two black marbles inside his head.
The trees shudder and the pumpkins grin and the cat is lazy and warm and nighttime with her heavy arms comes earlier now. And against the dark a deer races. Heart pounding beneath his chest muscle. His bovine skeleton will come apart and vanish into the soil before the spring.
“rest,” says the cat, “you’re tired.”
The deer races.
The deer races.
Behind him, the forest turns pale and blushes at her naked body. Fall is her favorite season to be naked. Autumn reassures us that spring will come. After all, you cannot have life without death.
“I’ve seen Schizophrenics do great things and then crash,” he said, a quiet voice in a quiet room. Quiet dust settled on a thin sunlit window sill. Hot tension settled, “Avoid anything that gives you any stress at all.”
I looked at the doctor but didn’t say a word, angry words trapped behind my teeth.
Great things aren’t done by avoiding hardship. I thought about the upcoming school year. It’s wasn’t going to be easy. But then, to defeat your diagnosis is a brave thing. It’s scary, and all along the way, people will like to tell that you can’t overcome what you have set out to do. Schizophrenics being gravely disabled aren’t only faced with challenges that any disabled person might face, but we are stigmatized too. Most recently I’ve been told I won’t be able to be aggressively intelligent, a skill I will apparently need to do well in college.
The first time I was ever told there was something wrong with me it was third grade. The smell strawberry scented markers filled the air. I held my marker clumsily in my hand. I don’t remember what I’m writing with it but I remember the wind blowing lazily through two purple curtains. The breeze is warm so it must still be September. The class pet, a white mouse, is sleeping in his cage. It’s close to the end of the day.
There is a fuzzy nagging at the back of the head. Like a string being tugged on. Then there is a voice. A voice which only I can hear. Creeping up my body like a ghost and leaving thoughts in my brain.
There was a great stillness in my throat.
I couldn’t draw a straight line. I couldn’t adhere to the margins of a page, all my writing coming out crooked. Mixed with my poor handwriting it became a problem for the teachers.
An Occupational Therapist came twice a week and tried and help. Holding my hands still and making me solve mazes. She thought that maybe there was a disconnect between my brain and my hands. She always wore skirts with animals on them. Blue skirts with dolphins and pink ones with pigs. By the time I stopped speaking the school didn’t know what to do with me so they decided to hold me back. I guess I was awkward socially. I don’t remember a whole lot of that year, just that the voices started.
By the sixth grade, I believed I had magical powers that my friends didn’t. Most of my school day was spent staring at the classroom door and wondering what might come through it. Monsters, aliens, a demon sly on two black wings. Math was an issue for me, the voices reciting lists of numbers as I tried to work through problems. I saw a six and all I could hear were lists of twelves. A thirteen and I could only hear sevens and eighteens. I never had a problem with the written language though, the voices inciting phrases and words for me. Helping my sentences to flow.
The third time I learned there was something wrong with me I was looking over the shoulder of a police officer. I was watching a grainy tape of myself, interacting with nothing. My blue Rite Aid work uniform black and white. Surrounded by shampoo bottles. Not a person in sight, though apparently, I thought so. I was in high school and although I had started speaking years ago, so had the visual hallucinations.
The fourth time I ever learned that something was wrong with me. I burst into tears in the middle of math class. Unable to breathe. A pale darkness surrounded me and outside the classroom window, I saw the same man I had seen at Rite Aid. Suddenly I was being escorted down to the Social Worker’s office. Then an ambulance with giant lights and loud sounds. Then a hospital. But this hospital was a different kind. It had doors that locked you in. In this hospital, they take the shoelaces from your shoes. All of your belongings are tied up in plastic bags. There is an old pay phone on the wall. Grimy from years of use. There are empty rooms. And there are crowded rooms where all the patients huddled around windows that looked out onto empty parking lots. Nurses come by and give you medications. Food gets brought up to you. There is a security guard with a taser. And a nurses station behind a wall of glass.
It wasn’t a healing environment.
I stayed there for three weeks.
That fall I went to college. I’d been living on my own since my first hospitalization. After six more hospitalizations, a bad psychiatrist, and a dozen or so medications I had grown accustomed to how many things were wrong with me.
“You’re sick, you need to be here right now.”
“Take this med or we’ll make you take it.”
“There won’t be any beds for a week, but you’re too sick to go home.”
“Don’t tell anyone about your diagnosis.”
“You’re not safe to be on campus.”
“You’re a liability in the classroom.”
“You’re diagnosis is a death sentence.”
Dust settled on my textbooks, heavy doses of anti-psychotics dulled my mind. Turning it to a beehive, amess with chatter but sticky with honey. I couldn’t think. I couldn’t move. So I dropped out of college. And became the image of the person my doctor claimed I would become.
For three years I let myself heal. Body and mind. I found a dose of a medication that worked for me. Finding that medicine was the catalyst that calmed the storm. A riled sea slowed inside of me. I could now pick up the debris which littered my brain.
I turned back to writing for the first time in years. I used writing to create a reflection of myself that I could understand. Coming to terms with being sick. Even though Schizoaffective Disorder is life-long, it’s still a life worth living. I learned that I could use my voices as a gift, letting them express themselves through words. After a few publications, I realized that it works. I started a blog to allow my voices to stretch their legs. They’re part of me, I can’t keep them cooped up forever.
As my brain slowly clears, I’ve made the big decision to return to school. To pursue something which I’ve was told I’d never reach. I’m braver now than I’ve ever been. Any life is a life worth living, and any knowledge is knowledge worth learning. I learned in Dialectical Behavioral Therapy that to function properly one has to balance rational mind with emotional mind. Doing this creates a calm that exists between the two: wise mind. A place we can all find peace. School teaches me the same thing. I’ve learned to balance my school work with my illness. The best example of emotional mind and rational mind that I encounter on a daily basis. Academia and Schizophrenia, place in which I find peace.
When I had my appendicitis recently I was left with very little memory of the day in the hospital. Each moment is like a puzzle piece and all the pieces are out of place. Punctuated by seconds of pain and long half-hours of my body cushioned by narcotics. I am reminded of the cohort of old men that gather every Saturday and Sunday at the restaurant where I work. Discussing how they are getting sicker and sicker. How the long light at the end of their tunnel will be THE LIGHT that comes after the darkness of death. I am reminded of my own chronic illnesses. I am thankful that the pain in my stomach was only my appendix. And not cancer or a baby I didn’t know about or my liver or kidneys. Only my little and useless appendix which had no function and could be removed the same day.
The doctor said, “we need to put a tube down your throat to breathe for you, we have to inflate your stomach and it’s hard on your lungs, you’ll be asleep for all it.” The pang of anxiety grew like a storm in my stomach but couldn’t replace the pain.
And then a nurse came and gave me some fentanyl. I knew some things about this drug (medicine) but only what I heard on the news. I am reminded that I’ve never been addicted to a drug like that and I am grateful. But I am also terrified.
Then I had the surgery. I woke up so cold I am reminded of winter. Dark and frozen and long. I recall the longest nights. The dead of winter. Water freezing when it meets the air. And now, six feet coming overnight, and the silence which comes on the heels of a Nor’Easter. It is the deepest silence you’ll ever hear. The greatest silence. The most powerful silence inflated over the whiteness of snow. Silence like a legend. The nurses covered me with five or six blankets. If it were more I don’t remember. The darkness and unfamiliarity of anesthesia wear on my body for at least the next week. I can’t imagine there is anything close to death. Aside from the night of my suicide attempt where I hallucinated my childhood cat. I’ve been told that perhaps she was an angel but I don’t believe in God.
In the minutes after surgery, I am basked in unrecognizable light fixtures. My brain grasps wildly for the last hour and a half. It’s made uncomfortable in the absence of time. Our thoughts are linear. I am reminded of our first night in our new house and how I got lost looking for the light switch along the wall. Hands sliding along the smooth wallpaper, confused and lost in a space which I was uncertain of. Uncertain of the door and the lights and how far the ceiling was from my fingertips when I threw my hands above my head. It felt like I was lost forever but I think I was half asleep. Dreaming is the only thing out of time that we can reconcile. The lights in the hospital where an unforgiving brightness. And laying in recovery my thoughts drift to a summer forest sewn up in green and bursting at its seams. Birds are loud and the harder you listen to the more birds you hear. I feel so far away from everything. Like I could lay down and die. Like I could decompose until my bones shown, wide and white against the summer sun.
Then there is soda in my mouth and the grogginess begins to subside. Sugar-water deliciously sweet against my tired tongue. Like lemonade on a hot day.
With my appendix removed I was sent home the same day. I was exhausted but the rocky pain in my stomach was gone. Only an ache was leftover from where the incisions were made. What had my infected appendix looked like? Like a clump of tissue? Like a worm? Like a tiny organ with a little definition? I know that the appendix is small. And that about one in five people will develop and appendicitis in their lifetime. Without treatment, I know that these infections are fatal.
Interestingly enough one in five people will develop mental illness in their lifetime. And while not everyone will need treatment, the more serious the illness the greater the need for treatment becomes. The earlier the detection the more successful the treatment.
I was lucky they caught my appendicitis early. It was caught before it exploded. This meant we could bypass open surgery. I received laparoscopic surgery and the so the recovery time was cut in half.
I was not so lucky with my Schizophrenia and Bipolar Disorder (Schizoaffective Disorder). My mental illness was not diagnosed for three years after its onset. I’ve been living with Schizophrenia and Bipolar Disorder for six years. Getting my symptoms under control after so long wasn’t an easy task. Being dismissed by doctors almost proved fatal for me. Years of grief led me on along a road of self-destruction. If I had received early intervention for my psychosis would it have been different? Would my first psychotic episode have been my only one? Would it have meant an acute episode and instead of full-blown, chronic, Schizophrenia?
It’s impossible to say. Myself, like too many other people, are lost to the system of psychiatric care. Allowed to fall to the wayside. Too many people will slip into drug abuse and homelessness. And on the brink of a fatal and final symptom. Death by suicide. One of the leading causes of mortality.
But we can continue to make changes surrounding the stigmatization of mental illness. We can change the way we talk about, treat, and support people with mental illnesses. We can change the statistics surrounding death by suicide. We can cultivate understanding about ourselves and others to encourage positive conversation surrounding mental illness.
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.”