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A bend in the river…

Hope you have a good weekend everybody!

WE HAVE FAILED JOEY AND MANY OTHERS LIKE HIM by Rebecca Distel Reinig

Continued from 4/24/19

Looking at Joey’s pictures, now, I cannot stop crying. He was such a happy little boy at home, away from those who tormented him at school. I’m convinced the traumatic experiences he had at the hands of other kids and teachers, contributed to the crisis and hell he is in today. If only I had a re-do. I would have been more assertive and demanding when Joey was bullied at school, when he cried every day and begged me to let him stay home.

I used to complain and whine to the school over incidents regarding him being teased and bullied but, looking back, I needed to do more, and I feel so guilty for that. His 6th grade IEP in school even diagnosed him as severely depressed and in the high risk category. Now, I feel I owe to him the opportunity to find peace, success, and happiness in life — things he’s had very little of.

The hardest part is accepting my roll in all this along with the feeling that others in his life — like teachers, counselors, police, social workers, the justice system — all need to accept their responsibility for failing him as well. My son is paying the ultimate price for being born different from the norm. It’s not his fault. We all have failed Joseph, and many others like him, and I’m so frustrated because I cannot figure out what to do to help him.

Drugging until compliant is not the answer. I’m not saying “no” to all drugs used — just that they’re abused by the system because its easier that way. The drugs administered to my son weren’t meant to be used long-term, nor in the combinations used. Some of the combos were on the very dangerous spectrum of drug interactions. When I confronted the doctor at the jail about it, he informed me that he knew what he was doing and asked, “Where did you get your info?” I told him, “From the FDA's drug interaction website.” Some drugs cause pancreatitis, which my son contracted four months after leaving jail, and it almost killed him. He spent six months hospitalized, is still suffering from necrotizing pancreatitis, and has spent a major part of the last three years in hospitals because of it.

Doctors should know this, yet administer these drugs anyway. I was told by Joseph's case manager at his insurance , “I’m not authorizing a surgery requested to remove dead tissue from Joey’s pancreas because he has, maybe, a year left to live, and no surgery will stop that.” That was over two years ago and Joey finally had the surgery eight months ago. That’s how long it took fighting to get the surgery approved.

As late as last week, I had to ask the doctor at Patton Mental Hospital (Patton State Hospital is in San Bernardino, CA. It’s an old "insane asylum" built in the mid 1800s) to look into the Zyprexa Joey was prescribed because I was concerned it contributed to pancreatitis. The doctor had no clue and, within two days, she stopped prescribing it.

You must be thinking I am bitter and angry, and I guess I am. In all areas of my son's life, I feel he was short-changed and that all of us, who could have helped my son, have failed him miserably.

JUST THE BEGINNING OF OUR JOURNEY WITH OUR SON by Rebecca Distel Reinig

My son, Joseph, was a wonderfully different child who had this uncanny intuition that left many of us scratching our heads in amazement. Our family used to say, "If Joey does not like someone, trust that there is a good reason.”

He truly danced to a different drummer that not all could hear or appreciate. There were two types of people in Joey’s life — those that understood how special he was and accepted him, and those who did not. They teased and bullied him right into adulthood.

Our first negative encounters with law enforcement began several years ago. Joey had struggled his entire life with learning disabilities and attended special ed day class since the second grade. He did graduate from high school with honors and a B+ grade average. After high school graduation, he started using the drug ecstasy and it was obvious his brain could not handle it. He became suicidal and on numerous occasions the police would call for me to pick him up, or they would bring him home after finding him wandering the streets.

His behavior escalated. One day his behavior became out of control. He was at home. He had a butcher knife to his throat and was threatening to take his life. He was either wildly swinging the knife around or poking it deeply into his throat. I called 911 and requested the PERT team — the mental health team at the Oceanside Police Dept. — to come and assist in getting him to the hospital. The team was off duty and the police were dispatched. Within minutes, there were three police cars at our house with the police gang task force officers. Joey began to run from the police officers. One officer tackled him to the ground and had him in a choke hold. I saw was the officer repeatedly punching my son in the face. Later, I found out that Joseph had bitten him in the arm because he couldn’t breath and that was the reason the officer kept hitting him.

I watched, as the incident unfolded, telling the officers Joey needed to be put on a 5150 ( mental health) hold and taken to the hospital. It took three officers to get him cuffed and put into the back of a police car. His face was bloody and he was clearly in a state of psychosis. He started screaming to me, “Please help me!” while beating his head on the passenger window of the patrol car until it derailed the window from its tracks. I kept asking for reassurances that he would be taken to the hospital and put on a psychiatric hold. I was told he would be. He was taken to the hospital long enough to have his face sutured, then taken directly to jail, and charged with three felonies: damaging the police car, resisting arrest, and for biting the police officer.

Joey spent the next 6 months in jail in "protective" custody (solitary confinement). He was allowed out of his cell for one hour out of every 48 hours. His mental health was never addressed other than to keep him highly medicated to prevent him from beating his head on the walls. He spent days at a time in the jail's "safety" cell which is a padded cell with a hole in the floor for a toilet. He was stripped naked and left for days at a time, sometimes in a straight jacket, until he became compliant.

Needless to say, Joey’s mental health spiraled out of control. To top it off, he’s now permanently labeled as a violent offender who assaulted a police officer. Luckily, he was assigned a public defender who worked diligently with us on getting him released. He, along with the district attorney and judge, recognized jail was not the place for him. Sadly, their hands were tied and they admitted my son's options were limited. The district attorney explained that there were limited resources for mental health treatment. She explained there were many programs for drug and alcohol addicts and very few to treat offenders who suffered with mental illness. After six months in jail, Joey was finally released into a residential program for individuals with a dual diagnosis of drug and mental health issues.

We were excited that he may get the help he needed. He struggled there. He left jail after months in solitary confinement. He had very little interaction with people during that time, was left only to his own thoughts — no tv, no radio — and a bible to read. He was so drugged he could barely string two words together. The only help he received in jail was a cocktail of drugs. Sometimes as many as eight at a time. Usually a combination of Klonopin, Ativan, Zyprexa, Depakote, and a monthly injection of Haldol. After only a few weeks, he left the treatment program. He returned home, a shell of the young man we once knew.

Little did we know this was not the end of his problems. Sadly, it was just the beginning of our horrific journey with our son, his mental health, traumatic brain injury, physical health, and fight for his life that continues to this day. Almost five years later.

To be continued…

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Tulip time.

Hope you have a good weekend everybody!

I AM ASHLEY. I DEFINE ME by Ashley Doonan and Cathie Curtis

Cathie Curtis writes, “My daughter finally succumbed to her personal struggle with mental illness and took her life four months ago at age 26. As parents we cannot let go of our children and need to find comfort in knowing that their lives will forever matter.” Cathie shares a few of Ashley’s reflections written shortly before she passed:

I entered college severely anorexic. I wasn’t really alive. But I also was so eager to learn. In high school I loved Hemingway, Steinbeck, and Sartre. I’ve always been a high achiever.

Frequently, I wonder what I’d be achieving if I wasn’t ridden with this illness. Eventually, I overcame it. I had three research assistantships. For my MA, I received a full tuition scholarship. I was presenting at national conferences. But there were dark days. Tomorrow is the anniversary of my first sexual assault. I tried to scrub myself clean with no avail. I went to my professor’s office the next day and cried. But I had so much support. It’s a feeling that I can’t describe.

I moved halfway across the country for a doctoral degree. From day one, I was physically ill. I have never seen as many emergency rooms and hospital beds in the entirety of my life. I had a subdural hematoma. My brain was bleeding. I had severe withdrawals that compromised my health. I’ve had three spontaneous seizures. But I went above and beyond to prioritize my education.

However, my institution didn’t see it that way. They ignored the fact that every research assistant under a specific professor is problematic. I lost it all during the time that I was gaining control of my life. It’s messy and not logistical by any means.

I am here because I respect and value my co-chairs and dissertation committee. I respect and value Northwestern for my acceptance. Last night, I realized that both of my professors had already submitted letters of recommendation and I almost cried. I emailed them my sentiments. These are the things that keep me going in academia when I feel like everything is falling apart. These educators are incredible to say the least.

I value education. Perhaps I’m a bit compulsive in nature. But I am ALIVE. I look at that picture of a girl on her high school graduation day that could hardly fake a smile. Sometimes, I still do that because I know that my ambitions have not exceeded my talents and I will exhibit that explicitly.

I conquered something that almost killed me and lost everything I worked for.

But there are still sunflowers. And I still open my blinds to let the sun in. Yes, it’s degrading. But I force a smile and remember that I have always given 100%, and that helps me sleep at night.

Growth is painful. Change is painful. But nothing is as painful as staying stuck where you do not belong. I grew amidst a time when I was losing everything I worked for. And no, it is not okay.

I cried because it does things to you to always come second.

More from Ashley that her mother, Cathie, recently found on her cellphone:

I seldom use this platform anymore so it’s all the more difficult to be vulnerable, but I’ve discovered this wonderful organization called “Project I Define Me.” If you know me, you know that I’m committed to destigmatization and promoting awareness surrounding mental health. Recently, I have overcome some of the most difficult things in my life and I’m proud to be where I am today. I want to empower and inspire others to do the same. Person-first language is so important and during this ongoing journey I’ve really learned how grossly misunderstood mental health is. I am more than a label or a diagnosis — I am a daughter, friend, sister, girlfriend, and PhD student. I am Ashley, and I’m here to tell you that I define me.

Cathie and Ashley. Ashley wrote: “ Unequivocally grateful for Cathie Curtis - who gave me life not once but countless times.”

Cathie writes: “ During some of Ashley’s most difficult moments when we were apart, I would tell her to close her eyes and feel me hugging her. Now, this is what I do. Knowing someone is in heaven gives us peace, but it doesn’t lessen the incredible void of human touch.”

MY APRIL VISIT WITH TRAVIS CHRISTIAN (BB8099) by Dede Ranahan

When I woke up, I knew Sunday was not going to go well. I hadn't slept much — awake for about four hours in the middle of the night. I never do this, but I erroneously took two instead of one of my morning prescription pills. Damn! I knew this would make me drowsy — on top of little sleep.

I put on a new pair of slacks and a matching top in olive green and a brown jacket. Last month, when visiting Travis, I had to wear clothes from the prison visitor’s center because I wore blue. Blue’s not allowed. On signing in, yesterday, at Folsom State Prison, the guard said to me, “You know, you can’t come in wearing green.”

I forgot about green. I’m failing visiting prison 101. “Really? I had to change clothes last month. Green? Really?”

“Yes, really.”

Back across the parking lot to the visitor’s center. I was given a black sweatshirt and grey pants. I liked last month’s outfit better.

Finally, I checked in at the visitor’s desk inside the prison at noon. At 12:30 p.m., I approached a guard and asked, “Was Travis Christian called? I’ve been waiting for half an hour.”

“He should have been called. I’ll check.”

Ten minutes later, Travis walked into the visiting area. “I’m sorry,” I said, “this visit has gotten really mixed up. Let’s buy you a sandwich. I’ll have to leave at 1:15 p.m.” (The visitor’s center closes at 2 p.m.)

Travis gave me a big hug. “I’m good,” he said. “I feel happy. I wrote new music and a song. This morning I sang it at church and everyone really liked it.”

We caught up. Travis has the same cellie has last month. “We get along well,” he said. “Lawrence is gone most of the day. He attends a drug and alcohol class all morning. In the afternoon, he works in the kitchen for six hours. So I have my cell to myself most of the time.”

“How much does Lawrence get paid working in the kitchen?”

“He’s paid eight cents an hour.”

Eight cents an hour? This sounds ridiculous to me.

“Do you like having your cell to yourself?”

“I do. I can study for my history and computer classes. I can write my songs and music. I can work out.”

Travis put down his sandwich and turned toward me in his chair. “I want to ask you something. I’ve been thinking about this a lot.”

Hmm? What might be coming?

“Dede, are you saved? Have you accepted Jesus Christ as your Lord and Savior?”

Big question. What do I say? I have to be honest. “Travis, I believe there are many ways to pursue a spiritual life. So no, I’ve not ‘been saved.’”

I think this answer concerns Travis. He likes me. He wants me to be “saved.” We discuss other religions. That people have choices. That maybe one size does not fit all. Travis is not deterred. He asks another question.

“Dede, will you right now, right here, with me, accept Jesus Christ as your Lord and Savior?”

“Travis, I want to pursue God in my own way. I hope you understand.”

Travis doesn’t finish his sandwich. Usually he chows down. Later, his mother, Kathy, will tell me that Travis didn’t eat much last week when she visited him. “He’s on a new medication for ADHD and it affects appetite. Did he seem manic to you?”

No, Travis didn’t seem manic to me, but he seemed different. Kathy is concerned about his med change. She talked to Travis’s prison managers. She told them, “He’s never been diagnosed with ADHD. I don’t believe he has ADHD.” Travis, however, wants to take the ADHD medication. It’s out of Kathy’s hands.

I had to leave by 1:15 p.m. to get back to the visitor’s center to claim my clothes. We took a quick photo and hugged goodby. Hope next month Travis is still “good.” And still “feels happy.” Hope the new medication doesn’t complicate matters.

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Our story — mine and Pat’s — is now live and available to order on Amazon. An exciting day full of mixed emotions.

See my book, Sooner Than Tomorrow - A Mother’s Diary About Mental Illness, Family, and Everyday Life on Amazon. Click here.

ADVANCE PRAISE FOR SOONER THAN TOMORROW by Dede Ranahan with Patrick Ranahan

NOTE: As of late this afternoon, 4/11/19, Sooner Than Tomorrow is up on Amazon and available for ordering. I’m in tears. My heart and soul are in this book. Thank you, so much, for reading it.

Click here to link to my Amazon book page:

In a few days, Sooner Than Tomorrow will be available in paperback on Amazon. Dedicated to mothers. Perfect for Mother’s Day! Please leave a comment on Amazon on my book page. I’m counting on word of mouth to attract new readers. Thanks so much!

FROM THE BACK COVER:

I had no idea, as I was writing my diary (June 15, 2013 — June 15, 2014), that I was capturing the last year of my son’s life. Pat died, unexpectedly, on July 23, 2014, on a hospital psych ward. Suddenly, my diary morphed into a more poignant record than I’d anticipated and, after he died, I discovered Pat had been making regular posts on Facebook. I decided to add his comments to my own.

One day, you know it will be your turn. Something alters your projection. There’s a major shift and then events will be referenced as “before” or “after.” Your life as it was versus the way it is now. In Sooner Than Tomorrow, I learn — right along with the reader — what will happen next. We’re all on a journey. Thank you for going on this journey with me.

—Dede Ranahan

Dede Ranahan weaves everyday events into her poignant account of her son’s descent into psychosis. She takes readers, with her and her family, on a harrowing journey — there is no guidebook — that too many of us are forced to take. Written in diary form, with entries by both mother and son, Sooner Than Tomorrow quietly exposes our nation’s shameful failure to help those with serious mental illnesses. It chronicles a mother’s unending love for a child and a son’s struggles to be well. An important book. A loving tribute. A powerful story that tugs at the heart and leaves readers asking, “Why can’t we do better?”

—Pete Earley,
author of CRAZY: A Father’s Search
Through America’s Mental Health Madness

This book about psychiatric brain disease is poignant and painful, but, ultimately, a necessary read. In its well-constructed pages, you’ll find a mother’s diary of her wonderful son and his terrible illness. Every clinician needs a copy of this, every mental health worker, every doctor, and, certainly, every family. Sooner Than Tomorrow is as real as storytelling gets. There are no stories more honest than those of our children who live with mental illnesses. This book tells one such story beautifully.

—Laura Pogliano,
mother of Zac, Board Member, SARDAA
(Schizophrenia and Related Disorders Alliance of America)

Among the uncountable tragedies of the mental illness sub-nation, is its near-invisibility to its host society. So-called normal people live alongside neighbors—even friends—whose quiet pain, mourning, terror, and desperation would affront the nation’s conscience if it were better known. Dede Ranahan is among the heroic witnesses who are breaking that silence. Her memoir of the loss of her son — passionate, eloquent, revelatory, and unspeakably brave — brilliantly takes its place among the beacons of light and truth telling that point the way to the reclamation of our most helpless brothers and sisters, sons and daughters, mothers and fathers.

—Ron Powers,
Pulitzer Prize-winning journalist, author of
No One CaresAbout Crazy People:
The Chaos and Heartbreak of Mental Health in America

MY GOAL IS NOT HAPPINESS BUT HUMAN UNDERSTANDING by Jerri Clark

Earlier in the week, Jerri Clark’s 23 year-old son killed himself. On March 28, Jerri wrote:

Today, extended family of our beloved Calvin Clark arrive in Vancouver, WA, to celebrate his brief but spectacular life and to mourn with us. Deborah Wang, reporter for KUOW, released this article (below). 

Deborah interviewed my husband and me as we packed up Calvin's apartment in Seattle last week. She captured some of the complex emotions that flooded us that day and that continue to surge through our systems as we process this tremendous loss and seek a path forward. My goal is not happiness but human understanding and compassion within the complexity of life. I'd like to explain this a little more.

Accepting that happiness is a momentary and fleeting aspect of life and not the "goal" leaves room for grief, struggle, and confusion. Those equally important experiences cannot be disregarded as bad, wrong or something to avoid. Families impacted by mental illness can seek comfort in accepting that happiness is not the only experience worth feeling.

My family and I are going to be with our emotions this weekend, in all of their complexities. Peace and gratitude to all who have reached out with love. Please find courage to sit with whatever you are sitting with right now and see the path lit before you. What is yours to say or do? What does that action look like? How will you make it manifest?

Anne Frank: "How wonderful it is that nobody need wait a single moment before starting to improve the world?"

Jerri Clark is the founder of MOMI - Mothers of the Mentally Ill

https://www.facebook.com/MOMI-Mothers-of-the-Mentally-Ill-287852191968017/

Read Deborah Wang’s article: Click here.

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I don’t see you. You don’t see me.

Hope you have a good weekend everybody.