Sisters in the Storm: For Moms of Mentally Ill Adult Children

By Linda Hoff

What do you do when your adult child receives a frightening and severe mental illness diagnosis that is progressive and incurable-and barely manageable? How do you support him or her without losing your own self to the disease? Sisters in the Storm is your coping tool. Written with love and extreme vulner

• Language: English
• Publisher: Stonebrook Publishing
• Release date: May 1, 2022
• ISBN: 9781955711104

Linda Hoff

Not only has Linda Hoff survived the storm, she has created a life of balance, joy, and purpose for herself and her mentally ill adult child (MIAC.) In her debut book, Sisters in the Storm, Linda shares her struggles, heartache, and lessons learned over the last ten years as she navigated through her son's unexpected schizophrenia diagnosis.Linda shares a home on the outskirts of Saint Louis, Missouri with a friend and fellow mom of a MIAC, two dogs, two cats. She visits her son regularly and loves to spend time in nature, traveling, reading, and enjoying time with her four grandchildren.

Book preview

This book captures the relatability so many mothers face with adult children struggling with mental illness. I particularly like the messages of hope around reclaiming your life and not fixing your child. This is a truly courageous work that will be an aid to many mothers in the ‘storm.’

—Angela Berra, LMSW, MA

Director of Programs, NAMI Saint Louis

"Linda Hoff does an extraordinary job describing the reality and complexity of caring for an adult child with severe mental illness. My sister had her first psychotic break at the age of fifteen, more than fifty years ago. My mother had virtually no support and was extremely embarrassed. How she would have loved to read this book and know that she had Sisters in the Storm! Thank you, Linda!"

—Barb Mecker

Sibling of sister diagnosed with Schizoaffective Disorder

Retired Special Education Teacher

NAMI F2F Facilitator

"I appreciate Linda Hoff for putting pen to paper and sharing her story and knowledge of mental illness. Sisters in the Storm is a very enlightening and educational. I learned more about mental illness and can relate to what she shared. It’s nice to know I’m not alone."

—Dorinda Wright

Mother of son with undiagnosed MI and addiction

"Sisters in the Storm is a heartbreaking and heartwarming book of the struggles many of us live with daily. I learned so much reading this book and enjoyed the honest and real portrayal of what mothers of MIACs experience. Linda’s presentation of her life was very relatable. I recommend book this to not only the moms of MIACs, but fathers as well."

—Lucinda Brown

Mother of son with anxiety and depression, additional undiagnosed MI, and addiction

"I pray that families touched by mental illness find hope and encouragement in Sisters in the Storm. May they know that they aren’t alone on this harrowing journey."

—Megan Manning

Sibling of brother diagnosed with paranoid schizophrenia

Director and Teacher of Mighty Kingdom Academy, Hermann MO

"Sisters in the Storm is a raw, no-holds-barred account of life with a mentally ill adult child. This book fearlessly and unapologetically tackles the pain and stigma of mental illness. The author’s journey through the grief, volatility, despair, fear, guilt, resentment, and shame are well written and relatable for anyone who loves a mentally ill person. With knowledge comes understanding and acceptance, and Sisters in the Storm has a lot to offer in the way of education, practical tools, strategies, and resources. Ms. Hoff ultimately found her way to peace and healing, and this inspiring, compassionate, and therapeutic book can help anyone in a similar situation do the same."

—M.S.

Mom: child with Bipolar II and/or

Borderline Personality Disorder (BPD);

Sister: sibling with Bipolar II, Generalized Anxiety Disorder (GAD), and Post-Traumatic Stress Disorder (PTSD);

Niece: Persisted Depressive Disorder (PDD), Social Anxiety Disorder, and Attention-Deficit/ Hyperactivity Disorder (ADHD). Previously diagnosed Bipolar II, Post-Traumatic Stress Disorder (PTSD), and Reactive Attachment Disorder (RAD)

"Linda Hoff tells the story of her mentally ill son, sharing some of the challenges and heartbreak that a mother faces with a MIAC (mentally ill adult child.)

She explores the importance of stepping away from the madness, even if it’s just for a little while. Linda facilitates a broader perspective, upholding personal boundaries, and creating a daily self-care routine that so many struggling moms need.

You’ll learn how to love your MIAC by accepting what is, how to advocate for your MIAC, and how to continue to fight the stigma, the criminal justice system, and the mental health care system for better options of care.

Sisters in the Storm reminds every mother that they’re not alone in the fight to help their MIAC."

—Sandy Samaniego

Mother of a son who’s been diagnosed with Schizoaffective Disorder, Anxiety, OCD, and Depression. He also struggles

with addiction, homelessness, & incarceration.

NAMI Family Support Group Facilitator

NAMI Help Line Volunteer

Administrator of Private Face Book Group,

Mothers of Adult Children Who Suffer with a Mental Illness/Addiction

"Linda has shared her deepest, heartfelt thoughts to benefit mothers with mentally ill adult children (MIAC). There’s a good chance you will cry—and maybe even laugh a little—at your life while reading Sisters in the Storm. One thing is for certain: you will learn more than you expected. Take advantage of the tools and advice offered, and you’ll undoubtably become a stronger sister in the storm for its reading."

—Trisha Munger

Mother of son diagnosed with schizophrenia

NAMI F2F Facilitator

Text, whiteboard Description automatically generated

For Moms of Mentally Ill Adult Children

Linda Hoff

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A STONEBROOK PUBLISHING BOOK

©2022 Linda Hoff

This book was guided in development and

edited by Nancy L. Erickson, The Book Professor®

TheBookProfessor.com

All rights reserved. Published in the United States by Stonebrook Publishing, a division of Stonebrook Enterprises, LLC, Saint Louis, Missouri.

No part of this book may be reproduced, scanned, or distributed in any printed or electronic form without written permission from the author.

Please do not participate in or encourage piracy of copyrighted materials in violation of the author’s rights.

Library of Congress Control Number: 2021925601

Paperback ISBN: 978-1-955711-09-8

Ebook ISBN: 978-1-955711-10-4

www.stonebrookpublishing.net

PRINTED IN THE UNITED STATES OF AMERICA

Dedication

This book is dedicated to my son B. Your courage and determination to live each day to the best of your ability is an example of fearlessness and hope. With humor and compassion, you’ve inspired me to be a better person. Your desire to live on your own terms, despite severe mental illness, is a reminder to cherish every minute of every day. I wouldn’t be half the person I am today if not for your illness.

As we traverse this storm together,

from my heart to yours with love always,

Mom

Contents

Dedication

Preface

To the Mothers

1. Make Peace with Your Grief

2. Coming to Grips with MI

3. Defeated Mom to Badass Warrior

4. Climbing Out of the Rabbit Hole

5. From Helpless Victim to Conscious Chooser

6. Expectations are Planned Resentments

7. Is It Yours to Carry?

8. Inner Peace Begins When You Let Go

9. Self-care Isn’t Selfish; It’s Survival

10. Courage in the Face of Fear

11. Find Happiness in Acceptance

12. Pull Yourself from the Rubble

13. Joy Is an Inside Job

Resources

Acknowledgments

About the Author

Preface

And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over.

But one thing is certain. When you come out of the storm,

you won’t be the same person who walked in.

That’s what the storm’s all about.

~ Haruki Murakami

The storm that came on that bright, sunny August afternoon wasn’t forecasted. The sky was a brilliant blue with just a handful of innocent, fluffy clouds. If only I’d paid attention to the ominous rumbles of thunder in the distance, the occasional sharp crack of lightning. If I’d known the severity of the impending storm, maybe I would have taken cover. Instead, I assumed it would pass, and I wasn’t prepared when it hit with gale-force winds—ferocious, merciless, and torrential. It was adverse and violent, severe and unreasonable, pitiless and invisible. This angry turbulence knocked me flat. Chaotic, destructive, unnatural—an unbridled menace. It left me battered and broken amidst the wreckage.

Mental illness is, indeed, a storm. A storm of epic proportion; a storm that not only damages but also destroys; a storm that changes the terrain and trajectory of lives; a storm that claims its place in history; a storm that divides before and after; a storm that washes away all you dreamed was possible and forces you to rebuild from the ground up.

We Are Sisters . . .

We are sisters

Bound together

By ill children

By refusal to give up hope

By determination to find answers

We are sisters

From every part of the world

From every walk of life

From every economic background

We are sisters

We share an eternal love for our child

We share the same struggles

We share the unimaginable

We are sisters

Forged together

By pain, by misery, by loss

By a tragedy nobody understands

By a nightmare with no end, no answer, no resolution

We are sisters

So different, but the same

Tied to each other by disease

Tied to each other by stories

Tied to each other by torment

We are sisters

Frightened and alone

Frustrated and disheartened

We fight to survive, to thrive

We are sisters

Lost in our child’s illness

Lost in darkness

Lost in an unsympathetic world

We are sisters

Every story different

Every child unique

Every struggle the same

We are sisters

We cry silent tears

We cry brokenhearted tears

We cry angry tears at a society that doesn’t see us

We are sisters

We share a journey

A journey of despair

A journey of tragedy

A journey of unfathomable destruction

We are sisters

Together we’re stronger

Together we survive

Together we move forward

We are sisters

We share sorrow and emptiness

We share empathy and compassion

We share hopes and dreams

We are sisters

We hold each other in our hearts

We honor each other’s path

We celebrate each other’s wisdom

We are sisters

Born to climb mountains

Born to bear unimaginable misfortune

Born to carry our burden in silence

No more

We are sisters

Together we have power

Together we make a difference

Together we show the world who we are

Together we find help for our children

We are sisters

United in grief

United in misery

United in the desire to create change

We are sisters

And we’re done

Done with stigma

Done with discrimination

Done with shame

We are sisters

We are sisters with Mentally Ill Adult Children

We are sisters with a voice

We are sisters with a mission

We are sisters

We move through battle together

We move forward together

We move on with our lives

We are sisters

With love in our hearts

With hope and prayers

With happiness and peace

We are sisters

We are the unspoken warriors

Our lives are linked

Our hands are linked

Our hearts are linked

It’s time

We have work to do

We are sisters.

To the Mothers

This book is a way to honor your journey as the mother of a mentally ill adult child (MIAC). As a mom, you entered parenthood wearing blinders, assured that all would be well, and if not, you’d have the knowledge and perseverance to figure it out. How bad could things get? Horrific accidents and traumatic diseases happen to other people but not your family, not your child.

If you’re here now, you know horrible things can and do happen to everyone. Things that others whisper about. Things that lurk in the recessed shadows of the mind. Things that nobody wants to bring into the light of day.

It didn’t happen overnight, but that beautiful baby you brought home morphed and changed into someone unrecognizable. That small child with the bright smile and twinkle of mischief in his eye, that girl who loved to snuggle and read books, who rode her bike and played sports—that person faded away. In place of your happy child is one who’s sullen, angry, and unapproachable. Is this just being a teenager? You hoped he’d outgrow this phase.

Then high school was over, and things headed downhill fast. No thoughts of college, he jumped from job to job, unable to have any perspective on life. She was past teenage angst and into drugs, alcohol, irrational behaviors, and unreasonable demands. You talked, pleaded, and begged. Ragged and raw, you berated yourself for your bad parenting skills, sure that you were a terrible mother because you couldn’t help your child.

Something unknown and unbidden snuck in and snatched your child’s mind. There’s a stealth and darkness to what has come. All that remains are the memories of what could have been, what should have been. In its place are irrational rants, incoherent actions, aggression, anger, and delusional thoughts. Personal hygiene, normal dietary habits, and sleep have vanished. Instead, you hear about grandiose money schemes, see the hours spent in isolation, tolerate his nasty moods, become the brunt of everything wrong in her life, and you watch your child’s unrelenting need to self-medicate. Everything unravels. How much worse can this get?

Unfortunately for me, we hadn’t yet hit bottom. I was convinced that it couldn’t get any worse. He didn’t eat, insisted the neighbors were conspiring to harm him, and collected hundreds of bits of paper with license plate numbers, dates, and secret messages. I couldn’t deny it any longer. These weren’t the normal woes that all young adults experience. Something was gravely wrong, and I didn’t have the skills to deal with whatever this was.

For my son, it took the police and two involuntary psychiatric hospitalizations to receive a definitive and grievous mental illness diagnosis. Praying that drug addiction had induced his bizarre behaviors, I harbored foolish thoughts that all could be fixed with the proper medication, and I held on to the illusion that normal was still within reach. My real child would reemerge, and our lives would pick up where they’d left off. Gone would be this disturbed imposter who wreaked havoc and turned life into a daytime nightmare. Gone would be the shell that looked like my child but was actually a stranger.

This book is a compilation of the journey I took to hell and back—of the storm I weathered—as I grappled with caring for my mentally ill adult child (MIAC). The lessons learned and insights gained came over a period of several years. Not a single moment of wisdom, but instead a spiral of increasing awareness and a release of harmful thoughts and beliefs until everything no longer useful was stripped away. I was in and out of the light and dark, over and over again, exposed and vulnerable until I wondered if anyone would recognize what remained. How much more would I need to let go of? In the end, what emerged was a deeper perception and acceptance of what couldn’t be changed—the creation of a new reality for both my MIAC and me.

This book is written for you as you emerge from the storm and trudge through the day-to-day struggles, chaos, and attempts to cope with a MIAC. You won’t find answers about how to change or fix your child. Instead, this will be your journey of exploration and expansion. Each chapter is designed to help you reclaim your life.

You may not feel ready to take this path of self-discovery, but I urge you to take the first step. Rest assured that this material will push you beyond your comfort zone. You might agree with parts of this book and disagree with others, but wherever you are on this journey, I honor you for the love, commitment, and support you have for your child. May you experience increased joy and balance as you navigate toward a better life.

The inspiration for this book came as I struggled to find support and advice. The insightful Iyanla Vanzant says, It’s important that we share our experiences with other people. Your story will heal you, and your story will heal someone else. When you tell your story, you free yourself and give other people permission to acknowledge their own story.

I make no claims to be a professional other than through my war-weary experiences. My story will be different from yours. But the journey is the same, the one you’re about to launch to reclaim your life, your purpose, your joy. Remember that you’re not alone, you’re stronger than you know, and there’s a light in the storm.

If you’re ready, let’s walk out of this storm together. Let’s begin the journey of discovery, redemption, and liberation. Thousands of women walk this path alongside us. They, too, seek answers, want to be understood, and are desperate for support. As you read, imagine yourself surrounded by these women—your sisters—each of us here to offer you encouragement, acceptance, and love.

As Buddha advises, Pain is certain; suffering is optional.

We are sisters

Tied to each other by our trauma

Lost in the midst of a child’s illness

We share a journey of tragedy

We’re united in our grief

We long to reclaim our lives

Together we survive

Together we flourish

Together we find joy

We are the mothers of a mentally ill adult child

Make Peace with Your Grief

We are sisters

Bound by heartache

Adrift in a sea of despair

We grieve a lost child

We share a mother’s pain

We are sisters

It’s 9:00 p.m. The phone rings. My heart skips a beat. My breath catches. It’s been four days since I committed my son to a locked psych ward. I’m B’s doctor, the caller says, and I’ve diagnosed him with chronic paranoid schizophrenia. You should seek legal guardianship as soon as possible. Your child will never be well.

What? I ask. Are you sure? What does that mean?

Call the hospital social worker in the morning, and she’ll give you the name of an attorney, the doctor said. Good night.

Click. Silence. My heart pounds in my ears as I drop to the couch, dazed. A cloud of darkness and impending doom surrounds me as I grapple with this dismal prediction.

This is a nightmare. My vision goes dark, and I drop my head between my knees as tears drip onto the carpet. I need to do something, but what? My ears buzz. My stomach lurches. I’m lost. There’s nothing to do until morning . . . except worry. Adrift in a vortex of pain, I can’t breathe, I can’t speak, I can’t think, I can’t comprehend what this will mean for B and my family over the next few weeks, months, and years.

I open my eyes. Everything looks normal, but it’s not, and I know in the depths of my soul that nothing will ever be the same. I’m not the same person who answered the phone five short minutes ago. Life is forever divided into before and after.

Mind too muddled to even Google schizophrenia, I’m sucked into the center of a mental health catastrophe. No time to eat or sleep. I need to find an attorney, become my child’s legal guardian, and learn as much as I can about this brain-snatching illness.

Everything seems impossible. Shock and disbelief hold me under. I’d hoped against hope that his bizarre behaviors were induced by illicit drug use. My life as I know has ended. A line has been drawn in the sand. Like a kaleidoscope, my perspective tilts, and the world becomes unrecognizable, broken pieces of glass.

It remained this way for a long, long time. Each spare minute over the next few years was filled with decisions of what to do next, how to help this lost child, find resources, and get appointments with psych doctors in less than six months.

The Roller Coaster of Grief

What is grief? Why doesn’t it look and feel the same for everyone? Is it possible to grieve someone who’s still alive? You expect to grieve a loved one lost to old age or accident, but how do you grieve a loved one lost to mental illness (MI)? A child who’s still very much alive but is creating chaos and upheaval in the family? How do you make time to grieve what’s gone while you’re in the trenches of everyday crises?

When your child is diagnosed with a severe mental illness, you face fears you never knew existed and discover strengths you never knew you had. Only in hindsight will you realize your true resilience.

Many won’t understand how it feels to lose your child and have him replaced by an angry, out-of-control, irrational, delusional imposter. What’s there to grieve? they ask. Your child didn’t die. He’s still with you. What’s all the heartache about?

Until you have a MIAC, you can’t understand the pain of watching your child lose his very identity, his dreams, his future, his dignity, his personality, and his mind. Your child was healthy one minute, and the next, he’s replaced with a distorted fun-house version of his former self. Gone are any chances of a normal life. He’s now an adult with minimal ability to make rational decisions, who can’t handle finances, can’t maintain personal hygiene, can’t find or keep a job, and has limited capacity to self-regulate his emotions and actions.

Not only has your child’s life undergone profound changes, but your life is now unrecognizable. You expected your child to grow, mature, and one day become self-sufficient as he moved into adulthood. This isn’t what you signed up for when you decided to become a parent. This isn’t a disabled child. Yes, mental illness causes disability, but it manifests as poor behaviors and brings with it a multitude of additional problems.

Elisabeth Kubler-Ross and David Kessler in On Grief & Grieving: Finding the Meaning of Grief Through the Five Stages of Loss present the way most people deal with loss. There’s a predictable progression when you lose a loved one: you deny, you become angry, you attempt to bargain, you settle into depression, and you end with acceptance. Everyone moves through these stages at their own pace. There’s no set time frame; each experience is unique. What’s similar in cases of significant loss and mental illness is that someone very much loved is gone forever.

However, with severe mental illness, your beloved child is still very much alive, while at the same time, everything about him is different. The stages of grief replay over and over. After you move into acceptance, your MIAC can and will relapse, and the grief starts all over again. The difficulty you face trying to mourn the loss of your child and deal with the day-to-day challenges of caring for him, your family, and yourself is unimaginable.

How do you come to terms with this calamitous change when every interaction with your MIAC is a reminder of what’s gone? It becomes impossible to remember him as capable and whole before the storm of mental illness destroyed his once-healthy mind. Every encounter is a reminder of what can never be. Whenever the open wound in your heart begins to heal, something else happens to rip off the scab. Each day is a rerun of pain and heartache, loss and ruin.

Most ailments and diseases show up as physical limitations or mental delays. No other disease manifests as a willful disregard of appropriate behavior. MI symptoms can include the use of illegal drugs, acts of self-harm, violence, destruction of property, criminal activities, promiscuous sex, irrational communication, homelessness, financial irresponsibility, lack of personal hygiene, the inability to keep a job, volatile relationships, and/or threats or attempts of suicide. No other disease impacts so many facets of life.

The National Alliance on Mental Health (NAMI) has compiled a list of the stages of emotional responses to ongoing mental health crises:

First, you DEAL with the catastrophic event, which leads to shock, denial, and hope against hope.

Next, you LEARN to cope or go through the mill, which ushers in anger, guilt, resentment, recognition, grief, denial, anger, bargaining, and depression.

Last, you MOVE into understanding, which fosters acceptance, advocacy, and action.

Your response to your child’s mental health diagnosis is so much more complex than the simple grief of a loss. With MI, it’s possible to move from acceptance to shock and denial to anger—in one day. There’s no finish line as the emotions shift back and forth until you take the time to work through this diagnosis and loss. Some days or weeks will be a roller coaster of emotions.

Even when you’ve worked through things and come to a place of balance, there will be times you feel like you’re back at day one again. So, you pick yourself up and begin the work again. Even though it feels like you start over each time, you’re actually making great progress as you work to process this loss.

One day, like me, you’ll be in a place you never thought possible. When someone asks, How can you be so calm and joyful? I tell them, It’s taken years of personal development and many, many tears.

Painful beyond imagination, those early days required a strength I didn’t know I had. Sometimes I wanted to give up, curl into a fetal position, and never leave the bed. Everything felt so difficult. Over time, it became easier to breathe, and the world seemed a little brighter. Hope allowed me to move forward, and you can too. The end result makes all the work worth the struggle.

I searched online and found a NAMI Family-to-Family (F2F) class nearby. It was my lifeline in those early weeks as my world was torn apart by a tornado of grief. The class offered so much information that I compared it to expecting rain and, instead, being caught in a flood. So much to learn and try to comprehend. I’m forever grateful for the information, support, and camaraderie that I gained from that class. While it touched on just the tip of the iceberg, it was a place to start, a place to begin to learn, accept, and heal.

I was disappointed to learn that, for many people, medications don’t eradicate the symptoms of serious mental illness. It seemed reasonable to assume that once my son, who I refer to as B, started medication, life could return to normal, and we’d both pick up where we left off. But not all prayers get answered. If I’d known what a long journey this would be for us, I might have chosen to give up. Mental illness doesn’t follow a regular path of crisis, diagnosis, treatment, and recovery. Nobody makes it back to normal.

What is Recovery?

Let’s take a hard look at what actual recovery looks like in cases of serious mental illnesses. After my child’s initial diagnosis, I didn’t understand what severe MI does to the brain. I naively thought that once my son was medicated, he’d become a normal adult again. Medication doesn’t fix the damage; it simply puts a Band-Aid over the bleeding. But the wound never heals. The psychosis may stop, but the brain never recovers. With severe mental illness, medication takes away some of the psychosis, delusions, thought disturbances, and hallucinations, but it doesn’t return motivation, clarity, critical thinking skills, or rationality.

Lives do not pick up where they left off.

Mental illness is the equivalent of a train wreck. Imagine your child was hit by a locomotive. Because of the physical damage, he’d spend the rest of his life in a wheelchair, unable to do the most basic things for himself. Special accommodations would be required. You wouldn’t expect much of him when it came to a job, self-care, or doing anything productive. You’d understand that every activity would exhaust him, and to just sit in a chair and look out the window might be all he’s able to handle.

Your MIAC has a similar injury. His body looks like it’s intact because the real devastation is concealed within his mind. If you visualize your child’s brain as being in a wheelchair, it becomes much easier to see his behaviors as symptoms of the wreckage mental illness causes. Your child may recover from the initial crisis, but he’ll never return to his former level of functioning.

Medical professionals say that it takes two to three years for your child’s symptoms to stabilize after a break from reality—and ten years before a new baseline of behavior is achieved. Recovery really means creating a new normal after the initial diagnosis. The brain is a very complex and delicate organ. With each psychotic episode, levels of ability are reduced. It can take years to see moderate improvement, with no resumption of prior normal activity.

The NAMI F2F class started my journey toward healing. While I learned everything possible about the brain and MI, it also became a path of self-discovery, inner exploration, and the opportunity to rebuild my life. At times, a darkness consumed me as I grappled and struggled to create a new identity. I felt overwhelmed as I let go of what no longer served me, created new beliefs, and accepted current realities. Each shift in awareness left me walking on a tightrope of uncertainty. My new normal was to feel unsteady and vulnerable. Some days it felt like all my skin had been stripped off, and I’d been left raw and exposed. Every time it seemed there was no more to surrender, I’d circled around to another layer that needed to shift and change.

Identifying Emotions

I figured out that I needed to create a list of the possible reasons for the emotions that rose up in me. Understanding what and why I felt a certain way offered tremendous relief. It gave me a sense of control over my feelings and why they occurred. Asking myself questions helped me to explore, clarify, and move toward a more positive outlook of the situation.

As I worked through and released unwarranted emotions, I was able to focus on what needed to be addressed. Holding on tightly only created emotional, mental, and physical overload. Piled-up feelings seemed insurmountable. But if I dealt with the emotions as they came up, I found a neutral space to work through what had occurred.

It’s less complicated to handle situations from ground zero rather than from atop a mountain of emotional baggage.

Grief will manifest as countless other emotions, and each one masks your inability to come to terms with your child’s MI diagnosis. Until you accept your MIAC’s reality, it’s impossible to grieve what you and your child have lost. Instead, you continue to bury the truth under a pile of emotions, each a distraction from what you must deal with—a mental illness that won’t go away. Every emotion is caused by a symptom of the disease and your child’s inability to change his behaviors and thought processes. To deny your grief, you push away your MIAC’s prognosis and continue to perpetuate your delusion that all is well, that your child is capable of change, and that you can control the outcome.

It’s normal to feel all these emotions, but it’s important to figure out why you try to hide from them. The bigger the pile, the longer it takes to get to the core issues. Ask yourself why you feel the way you do, if what you feel is valid for the circumstances, and if your MIAC can change his behaviors.

Just when I think most of the grief is past, I’m reminded of what’s gone. The simplest activity can cause heartache. For instance, when my MIAC needed a haircut, it took six months to coax my son into agreement. He looked like Medusa with a head of wild, dirty curls. I whispered a prayer that the young girl who cut his hair wouldn’t find any bugs.

He sits calm and quiet and explains the cut he wants to the stylist and even asks about her day. He almost sounds like any other thirty-year-old as he makes small talk, but he doesn’t look like one. With his stained clothes and disheveled appearance, he looks homeless. As I watch through tears, I remember him at the barbershop as a small boy. The promise of a positive future still hung in the air. His eyes shone with energy and excitement. Today his eyes are dull from the meds, and there’s no expectation of any future.

Thanks, B says, always polite. As I pay the girl, he adds, Mom, she worked hard with my hair. Give her a big tip. He looks nothing like the unkempt young man who walked in the door a few minutes ago. I look up at my handsome MIAC and imagine him healthy. He should be able to pay for his own haircut and then head off to be with a girlfriend. Instead, he gets in my car, and I drive him back to the residential care facility where he now lives. A haircut seems like such a simple activity that everyone should be capable of doing, until it’s not. Today my heart hurts.

What’s Lost

Until you’ve experienced what it’s like to live with a MIAC, you can’t comprehend the degree of ruin the disease can cause. The entire family can be slaughtered by the destruction. It’s as if a hurricane picked up your life, spun it around, then hurled it back to the ground, broken and scattered.

What’s been lost with a MI diagnosis? Your child is still very much alive, but so much of what makes him who he is has vanished. Mental illness sucks out the positive qualities and deposits negative behaviors. What’s left is a unique hybrid of who your child used to be: A shattered brain hidden within a healthy body; an adult who looks normal but, in fact, needs the care and structured environment of a much younger child.

Severe MI carries many layers of grief that continue to unfold as the disease progresses—and to the degree to which your child is affected. Each loss is another stone added to the pile that lies heavily in your heart. You need to assess what’s changed, what he’s capable of doing now, and what will never be.

It’s difficult to understand what appears to be a healthy young adult who behaves in the most inappropriate ways. To many, especially parents, his behavior seems like a matter of laziness. Here’s someone who used to work, drive, pay bills, hang out