Tag Archives: Advocacy

“I hate the word, “bipolar.” It’s ugly, an overused throwaway word. Call me whatever.‬ #I’mAWhatever if you must. Jackie works too.”

I couldn’t resist responding to the lovely Carol Adriana Estrella‘s post on Facebook this morning.

“Doing a small survey:
What are your first thoughts when you hear the word “bipolar”. Being that is an illness, I see it used around A LOT as an adjective or a subject.”

Visit the very hip and informative blog Is Ok Not To Be Ok to view some of the varied responses (including my abridged one).

Carol explains, “I did a very informal survey today asking people what were the first thoughts that came to their mind when they heard the word: bipolar. I got an incredibly array of answers from the usual (and often not funny) jokes, to what a harsh reality is to live as a bipolar individual.”

Thank you, Carol Adriana Estrella for starting the conversation today.

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I hate the word, “bipolar.” It’s ugly, an overused throwaway word. Call me whatever. I’m a ‪#‎Whatever‬ if you must. Jackie works too.

The forward from GEORGIA PINE explains how strongly I feel about the word(s), “BiPolar Disorder.”

“Perspective

I wrote The Vast Landscape, the prequel to Georgia Pine at a dark, scary time in my life. Harrison, the brash heroine, was someone tangible I could cling to. She gave me reason to get up, to go on, to fight, a much-needed respite from what was happening in my real, everyday life. I made the conscious decision not to write about manic depression, the disease that has disrupted every neuron firing through my beautiful, chaotic mind. Bipolar Disorder, the label I detest, is en Vogue. It appears in trendy bestsellers, Oscar winning films and sensationalized television. It’s glamorized, modernized, made to look cool. Trust me, it is not. Mental Illness is the train wreck, the ugly, cruel, exhaustive, intangible, and solitary battle. It does not discriminate among rich, poor, smart, stupid; it brings grown men to their knees, ripping whole families apart. Writing The Vast Landscape freed me to live my dreams on the page. Harrison is I, I am she, mixed together so deeply the lines disappear. The outlines blur, intentionally. Was The Vast Landscape reality or fantasy? That is for the reader to decide. We are all disabled, broken parts, lost individuals, trying to find our way. Truth is what you know, here and happening now. There is only love and love is the bravest character of all. Harrison is the voice in our heads, asking the important questions. Where do I fit? Why am I here? Will I love, be loved? We are born with a fixed expiration date, yet we carry on, walking this earth the best we can until we’re pixie dust. Cherished, kept alive in memory and yellow parchment, we become precarious, aged photographs in a cardboard box. Lives touch, intersect in the most unpredictable yet meaningful ways. The essence continues because you do. Harrison leaves the door open a crack. I seize the opportunity to revisit my whole, healthy self a bit longer, live in the mystic beach home I adore, dream eyes open. Hope is our greatest asset. To choose hope against the worst possible odds is the true measure of life.
The story continues in… Georgia Pine.”

Excerpt From: Jacqueline Cioffa. “Georgia Pine.” iBooks.

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“This first Friday in June, all I know is I am doing my best. My very damnedest. And it looks like this…”

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I felt like this today.

You don’t need to hear about the numbness, excruciating pain, overwhelming anxiety, residual anxiety, paranoia, dizziness  or that I prayed to whomever was listening to just end it. Fucking end the ridiculous, relentless, ad nauseam, non-sensical hours that consume my days. Frankly it’s wearing me down, ripping me to shreds and fucking exhausting fighting invisible monsters.

Yes, I know I’m sick. Yes, I understand tapering off benzos is worse than hell it’s maggot filled shit. Yes, my empathetic, cool therapist talks it out. Reassuring me I am indeed strong enough.

Resilient enough. Tough enough. However. Makes me wonder.

Where in the hell am I going to replenish precious missing elements when the planet is currently fluctuating between earthquakes, tornadoes and drought? In a constant state of chaos, flux. How to replenish when I can’t remember pieces of yesterday. Blurred and hazed memories clog and pollute the brain.

Where? How? Why? Great questions. With zero answers.

I said NO anyway. For shits and giggles, ya’ know.

I don’t feel like shit, I feel eradicated, violated and obliterated.

I go to the hairdresser’s armed with my peppermint and lavender doused washcloth unsure I can make it through the hour-long dye process without flipping the fuck out.

Home. I want, need, have a deep desire to be home.

Grey roots and I have a larger more burning desire to feel pretty, alive, and validated.

Breathe, just breathe. You are safe. You are fine. You’ve been through this before. You are safe, breathe.

Your stylist is your dear friend who knows and loves you well she will take you home if necessary.

FUCK YOU anxiety, fuck off, go fuck up someone else’s day/ existence.

It’s sitting there threatening strangling my neck, throat, cramped shoulders, tingling extremities and limbs. Sitting patient, greedily waiting to pounce.

I apply eyeliner (Armani #02 pencil my fav.) and concealer to brighten my shiteous, difficult existence and in spite.

Tomorrow will come with or without me, isn’t that the cliché? What they say? Whoever the hell they are, Martians maybe. Fuck if I know, can’t be sure.

This first Friday in June, all I know is I am doing my best.

My very damnedest.

And it looks like this… on the outside

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“You never really understand a person until you consider things from his point of view… Until you climb inside of his skin and walk around in it.” – Harper Lee

“I am somebody’s child, you know. I am somebody’s child, same as you.” Jacqueline Cioffa #home #mentalillness  #family

I never cared much about looking back when I was young.

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I could not wait to leave this house, this town get out and experience stuff. You know the obstinate dreamer looking for bold adventure. It worked. I ran. I ran fast and far, and kept running. That’s the funny thing about developing a serious illness, you are forced to re-prioritize. Becoming insane in the middle of Manhattan did not bode well for me or the strangers that crossed my path. The fancy friends eventually grew tired and gave up on listening to the paranoia, illusions of grandeur or understanding the enticement of pretty pink and shiny purple horses or the flickering lights of the carousel. Ones you can’t dismount or runaway from or dismiss, like the mania and depression you can’t out run. Round and round you go, in perpetuity. There are worse things than glaring evil stares when dancing alone in a Radio Shack in Harlem. There are even worse things than sitting on the floor in the middle of Rite Aid, Gatorade in hand, sobbing because you don’t know where you are, why the room is spinning or if you’re going to hurl from the strobe light storm happening inside your brain. There are even worse, more horrific things than why you’re all alone sitting on the cold, dirty floor. You are sure there are. You watch the news, bad shit happens. This bad to you, you’re not so sure.

Mortifying, that’s what mental illness is. Ruthless, ugly, hide your face in shame from the judgmental, fearful stares. The noise level in NYC is just too high. You can’t stand when passerbys brush against you, the subway screeches to a halt, or the taxis whizzing past. The bright yellow hurts your eyes. You can’t see. You can’t hear. You cannot process the incessant, relentless buzz, hums and whirring noise.

S.T.O.P.

I am somebody’s child, you know.

I am somebody’s child, same as you.

I used to love the Carousel screaming and running towards it, arms flailing like the happy carefree girl I once was.

What I can’t figure out is what the hell I’m supposed to do? Now. With this.

Some people are addicted to the mania jonesing for the next high, the visions, euphoria.

No, no, no.

Not me. I’ll take the black hole depression and blasé every single time. It’s quieter and peaceful alone in the dark. Except for being skinny, that part of the mania I’ll keep.

There’s only one thought to trust, one way to save yourself.

Maybe, maybe if you go back you might find your way.

Safe passage awaits.

Home.

Maybe I’ll breathe easier there.

Maybe the familiar, childhood home might save me.

Probably not. It’s my best shot.

You see, I don’t care if I live or if I die. I know that sounds harsh, exaggerated, self-indulgent but it’s not.

I only care how I live and where I’ll die.

I’ve been asking my mom about her mother as far back as I can remember, cataloging the information in a deep, pooling reservoir of serenity where I could reach in calling on the stories to be soothed.

I have tidal waves of memories, and ripple effects of love stored in my brain.

My grandmother, May, died in her sleep before we could meet. Fifty-three is too young to leave, she was barely getting started I bet.

I know some things about her. She liked to fish and the solitude of being on the water. We have that in common.

She drank a Manhattan every night after work. She was a baker’s daughter, my mom still makes her molasses cookie recipe at Christmastime. She loved her husband who’d get sick, (like me) and then better but never quite the same.

“Don’t bother your father,” the phrase handed down to her own daughter.

May worked in a plumbing shop with him, raising her children to be responsible, gentile and hardworking.

It was a simple, honest life.

She liked to dance, but didn’t go out often.

She loved gardening, planting roses and peony  bushes.

Did you know it takes peonies a full year to bloom? 

Maybe May knew while planting the seed, her heart full of family.

An invisible string from the heavens touching mine, her orb a sweet- scented blushing pink.

Maybe she knew, probably not.

She’d adored diamonds like me, wore an outrageous sparkling solitaire with facets that shimmer and catch the light on my finger. I only wear the precious heirloom on special occasions or when I’m morosely blue. It makes me feel pretty inside, close to her.

“You never told me I looked like her,” drilling my mother with yet another ten-thousandth question.

She nodded, “it makes me sad and happy at the same time.”

Home, a place one doesn’t fully outgrow and never truly leaves behind.

But home, this home however much I am the failure for needing to return is where I would like to live and how I would hope to die.

Not necessarily the physical dwelling, but the contentment feeling and serenity of a happy place inside.

Surrounded by love. Less alone.

Unencumbered by the weight of heavy living.

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“Legacy can feel heavy, sad or even sweet-smelling at times. I am the gatekeeper of this home, but not the original keeper of the key.”

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“The chaos comes with you,” simply stated my friend. -The Red Bench excerpt by Jacqueline Cioffa

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“As an artist do I need constant flux to create? How will I find words in the woods surrounded by trees and rotten cornfields? How will I find anything besides dying, wet leaves?

I cannot escape the volume in my head, the constant churning. The Jesus fucking Christ, turn it down chatter. I have been told to be patient. Wait for the drugs, the quieting veil, and the lavender calm to smooth out the ringing. My mind is full of death and black spots I’m sure, much like a stroke patient after a spell.

   “The chaos comes with you,” simply stated my friend. He was right. I am here, here am I. Sick and tired, tired and bullshit sick.

The blank paper waits and my hands navigate the keys and the thoughts go where they may.”

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-excerpt from “The Red Bench” by Jacqueline Cioffa

One, Two Buckle My Shoe

One, Two Buckle My Shoe

By Jacqueline Cioffa

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One, two buckle my shoe. I don’t know how other writers find their way into a story.
For me, it usually goes something like this. I hear a line in my head, a word, see a visual, and then the story plays over and over, until I release it onto the page. Its cathartic, sometimes it takes me back, some days it moves me forward when I am wallowing and can’t get unstuck. Most times, it’s just an honest, real interpretation of an emotion. I’m an emotional girl. Or, so I’ve been told.
I live with the image, words, sometimes for days, weeks, even months. Then, like magic or being possessed, I have to get it out. My fingers take over the keys; my mind wanders and dictates the thoughts, mulling it about until there is a clear picture. I see mere babies growing, learning the simple phrase, “One, two, buckle my shoe.” We are all preconditioned from the start. “Look at me, Mommy look what I can do. I can talk, walk and dance all on my own.” And we wait, for the love, the adoration, the pride on their faces. The loving adoration of a parent and their perfect can do no wrong baby girl. We wait, and then we wait some more.” Look Daddy, I dyed my hair red with a blond streak, I wanted to be different”. I got drunk in school, lashing out against the bullies, the in crowd, and the machine, desperate to be an individual. Daddy holds my head as I puke and strokes my hair, he tells the first lie. “It’s ok, baby girl, you are my princess, you are going to be all right.” And we wait, for the clap. Bravo, you are so smart, so beautiful they say. You are positive they mean it. You miss the roll of the eyes in frustration, or the bed time whisper and tears, “I’m so worried about her.” She’s too young to be this sad, so depressed, to be so oddly different. One, two buckle my shoe. I must conform to society, wear the same shoe, walk the same old boring old walk, say all the right things. I’m sad for the young girl, so miserably, visibly unhappy, in high school. I hate the way this feels; I take note that I am different. They say nothing, providing all the pleasantries and comforts of a supportive, loving home. I am so lucky like that. Maybe they knew all along, how horribly difficult things would turn out, how unusual I would actually become.
“It’s not her fault, it’s in her genes.” Oh my God, did they speak it aloud? She’s Mentally Ill. What?! One, two, buckle my shoe. I try to be normal, to please them, to see the admiration still on their faces. My daddy is gone, he died a broken man. Mental Illness got him, no matter how hard my mother fought. She did not win. We buried him in a grave and he has not yet come back. I wait for him. I still wait for him. In my dreams, during this sabbatical and these sick days, he hasn’t come. He can’t quite find his way back. One, two buckle my shoe. My mother has aged so. The bravest, head strong, caring, woman I know. Cursed in this lifetime to fall in love, make a family. One, two buckle my shoe.
With a baby daughter who would grow to walk in her father’s shoes. I didn’t mean it, as hard as I try, I can’t win. The Lunacy gene has taken hold of me, too. One, two buckle my shoe. I don’t care if I die see; the excruciating days are too hard to fill. I came back home. Home, to the safe, happy childhood home I once knew. It’s less happy now. There are fewer nursery rhymes. There are only mornings, where I wake shaking and take pills. Lots and lots of pills, I count. Ten a day, sometimes twelve. I don’t want them, fuckers one and all. I hide it best I can. Inside I am a ticking time bomb, shoeless, crying, screaming, I’m so sorry I didn’t make you proud. I gave it my best shot. I hide the pain, the fear, the paranoia, and the overwhelming anxiety the best way I know how. In the bottom of an old, outgrown, dated, and worn down shoe. I’m sorry, really so very sorry I never meant to lose my mind. I’ve always wanted to come back to you, to make my mother and father proud. I lie most days, I do. Sometimes that even makes me feel better. I can forget the ugly future that awaits.
I am penniless, wandering with no direction. One, two buckle my shoe. I end up in an institution or worse on the street. No one cares. They barely saw me before. You see, while my parents were busy clapping my way into adulthood, I saw it. The times they were preoccupied doing the dishes, mowing the lawn, getting on with life. They missed my first steps. Not on purpose, not without regret. I know they tried their best, I know they did. But, I’m still looking for that first and final clap. It never comes. I will always be out of step.
I drink Ginger with a bit of Ale to ease the relentless ad nauseam that is the day. It’s winter here. We have had an easy time of it. Today, the sun shines and I reminisce. One, two buckle my shoe. I can’t remember the full verse. I guess it doesn’t matter anyhow. I will ask my mother. No, no I must not. I must learn to walk on my own, however blistering and uncomfortable the shoe. The numbness fits.

originally published April 2012 brooklynvoice.com

“Because you, more than anyone I have ever known loved being alive.” L.B.H.

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Lupe and I must have walked the loop at Hoopes Park a thousand times, or more.

In ten-degree freezing black ice, navigating lethal dangerous walkways (and fallen more than once), on grey-cloud, weepy wet gloomy days.

You name it. We’ve dredged through it.

It helps, ya’ know. The walk.

To free the brain from the pressure, dark and dangerous thinking.

Easing up, releasing the unrelenting anxiety.

When we walk past the white pristine house with the red door, I have to fight the urge not to run up and knock.

Or barge in.

She’s not there.

I know this to be true in my head, but my heart searches for her.

Missing every puzzle piece and all her silly ways. Her sage advice, too.

The water fountain, Buddha and Zen room she created, so proud to show me the space.

Her home with the red door is just a dwelling now, somebody else’s house we pass on the walk.

Suicide was never her choice, she just couldn’t stay.

I don’t believe there are coincidences, I choose to believe there are signs along the way.

L.B.H., I believe you threw me one today.

It’s the perfect sixty-degree, pretty blue sky day with sunshine peek-a-booing through the clouds.

Like a child playing hide and seek, giggly and covering their mouth to contain the excitement.

Just like a happy child, exactly like you.

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http://standagainstsuicide.org

Thanks for the Buddha, water fountain, precious memories and luminescent magic that was your life.

The Zen room has a new home, with me.

I’ll do my best to keep them safe.

I’ll do my best to keep you safe, using my voice.

I stand against suicide, because your life matters.

Because you, more than anyone I have ever known loved being alive.

You, and your gypsy-free spirit, brilliant, bold, courageous, compassionate, goofy, non-judgmental, all-encompassing, curious, big beautiful love would be walking right beside me.

You are.

I can’t see you, but I feel your presence in mine.

I did not forget.

2 days and eight years gone is too long.

You were, and continue to be forever loved.

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Mental Health Warrior: Jacqueline Cioffa

Proud to be a featured #MentalHealthWarrior and fellow Stigma Fighter on The Lithium Chronicles. Together, we are changing the world’s views on mental illness through our words to raise awareness. Thank you, Nicole Lyons.

Nicole Lyons

One of the many things that I admire about Jacqueline is that she embodies real compassion and humanitarianism. As a Stigma Fighter and advocate, Jackie shares her own personal stories, spreads awareness, and shines light where ignorance would prefer it remain dark.

Jackie has experienced so many different and fascinating adventures in her life, some haven’t been all that great, but they haven’t tainted her or driven her to become bitter in any way. Jackie believes in celebrating people for their accomplishments, and lifting them up when they fall. She expresses gratitude whole-heartedly, and this is rare to find today. Jackie is a gem, and it has been such a pleasure to get to know her. I love everything that she stands for, and I believe that she is changing the world. Thank you, Jackie. You are inspiring.

The Fault Line

By Jacqueline Cioffa

I keep coming back to one thought. Let…

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cool like that

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I love this. Because inside these words says a whole lot about me.

And because I did not make it. Someone I respect and admire did.

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Because she’s cool like that, I’m cool like that.

“We are left with the prisons of our own minds and that is heavy enough.” J Cioffa #MentalIllness #Treatment 

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One in Four. No, not Really. 

The very real, gut-wrenching mental illness statistics remain not far off from fifty years ago when pyschiatric institutions were the solution, lock them away.

As long as my beautiful chaotic mind and the words don’t betray me, I use my voice.

I am Three in Four even Four in Four, hit the mentally ill genetic jackpot. The reality is I could snap at any moment, I pray won’t.

Please, don’t judge. Don’t judge the ‘crazy,’ the insane, the unfit, the unwell, the lunatic that is me. Help us instead.

We are left with the prisons of our own minds and that is heavy enough.

From the Washington Post, “A shocking number of mentally ill Americans end up in prison instead of treatment.”

http://www.washingtonpost.com/blogs/wonkblog/wp/2015/04/30/a-shocking-number-of-mentally-ill-americans-end-up-in-prisons-instead-of-psychiatric-hospitals/

I Am Adam Lanza

By Jacqueline Cioffa

A decade ago I lived a frivolous, spoiled, privileged life. An International fashion model, I worked in more countries than I can count. Freedom was something I took for granted, until the earth fell from under me and my whole world shattered. My first psychotic breakdown took away everything I knew to be true and buried me whole.

The paranoia, delusions of grandeur, mania, the irrational and out of control behavior. I wanted to die, too exhausted by the fragile, broken mind. I wanted to let go of the rage, the fear, the despair, I wanted to end my life. The slicing of the wrists, my escape and a way out. Dancing in the streets, in stores, I was too out of my mind to be ashamed, by my behavior. The shame and isolation would come later, as thick and heavy as a steel beam, freight train crushing my soul. I lived with my brother, exasperated, helpless, not knowing what more he could do, he put me on a bus back home to my mother. My Irish, stubborn, loyal, family first, capable mother. She had experience dealing with Mental Illness; my family had been plagued by the unlucky 1 in 4 gene pool.

My sick, wracked mind betrayed me, no longer mine to control. The whole and intact me, I used to know now gone forever. The carefree, compassionate, strong, independent person is living her worst nightmare. Even on the hard, horrific days, the dark evil thoughts dominating my brain, I fight desperately to regain control. If you have not been exposed to Mental Illness, please do not talk to me about it. You are out of your league, cannot begin to comprehend the exhausting toll it takes. On a family, friends, that is if you are lucky enough to have any left. Mostly, you are left with isolation and shame, your own.

My second breakdown brought black days, numbness, and a shell of a person. The depression and anxiety, so crippling I was forced to leave the big city, retreat back home to the safety of familiar surroundings. The pain so deep, so heavy, the fear immense, death seemed my only option. A welcome release from the demons, the evil lurking in the corners of a tortured mind. I work hard to beat the beast daily, as soon as my feet hit the floor, shaking. I take the psych drugs, Lithium, Xanax, Valium, the shock treatments and practice alternative medicine. I do yoga, eat healthy, exercise and live simple. I try to avoid the triggers, terrified of the next episode.

I never know when the outbursts will come, when paranoia will convince me the man in the park wants to kill me. In my heart and my soul, I know this is completely irrational. But, the mind plays tricks. I have to fight, every minute, every second to control the grappling Illness I must live with. Day after day, in constant fear of what I might do next. I don’t own a gun, I would be afraid to have one in close proximity. I hate violence, I find it abhorrent, but I do not trust the beast.

There is no concrete help for the Mentally Disabled; there is half hour, once a month consults with the overworked, underpaid psychiatrist, who spends your time glancing at a clock. There are no solutions, into the mysteries of a broken mind, they throw pills at you. Pills that may very well be your undoing, send you deeper into depression, trigger manic episodes or worse an acute psychotic episode, and the killing of innocent souls. Those are the worst breaks, the psychosis, and the hardest to come back from. I have visited them firsthand.

I watched, helpless as my beautiful, brilliant, Yale educated, compassionate cousin ended her own life. She was a Dr., the smartest person I know and she could not find a way out of the Mental Illness that plagued her. My own father, who endured 17 years of Mental Illness, endless pills that made him worse, psychiatric hospital visits, a dementia ridden mind at the end. My mother, who fought every battle with him, and for him when he couldn’t. His daughter who would always be in my memory, his adored, precocious, funny face, happy and intact child. He died not knowing my name. Although, in my heart and my spirit, I know exactly what I meant to him. His last breath I was beside him, holding his hand and on his heart. I felt the unbearable pain and destroyed mind, set free as he floated up to heaven. He was a good man, the kindest, most selfless I know.

I am a good person, who doesn’t deserve this fate. I am not a violent person, but I am Adam Lanza. He may have committed a horrific, unspeakable EVIL, act. Did he start out evil? He must have been an innocent, child himself at some point. When did his broken mind take over, when did he lose all rational, self-control? It’s too hard to grasp, too big to think about without immeasurable faith.

When are we, as an empathetic society, going to care about the Mentally Ill? Fight for them; stick up for them, as eagerly as we fight against gun control. When will we do something about the fact that there is no place for ‘us’, when the evil, mind disease takes hold? They send you to the ER, push a pill, perhaps a 72 hour hold to the Psych Ward. There is nowhere a parent with a disturbed, sick child can turn. We are in trouble, as a society. Take the guns off the streets, a mentally disturbed individual will find another way to kill. Help us fix them, with more research, better facilities, more culpability from the Government and its people, for the Mentally Ill.

I weep for those children, the families, the unimaginable depths of pain and sorrow. I rejoice in my youth, safe, happy and healthy. I’m grateful for that. I expose myself, sharing my story. Perhaps it can help bring insight and perspective. I don’t believe human beings are evil, I believe they are defective and commit violent, unspeakable acts.

Mental Illness has afflicted me, but it could’ve been you or a loved one. One in four is not great odds. I am alone, completely and utterly alone with my Illness, even while surrounded by an empathic family. I am not a child; I am an adult, who’s better equipped to manage this bastard disease.

Please, don’t judge me. Don’t judge the Adam Lanza’s. Don’t judge the ‘crazy,’ the insane, the unfit, the unwell, the lunatic that is me.

Help us instead.

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