HAPPY PIC

Roses.

Hope you have a good weekend everybody!

HELPING FOLKS UNDERSTAND by Mindy Willers

Aloha everyone. I'm Craig Willers' wife.

See Craig's posts on this blog:
Hope is Critical - Nov 2, 2016
We are Sick, Not Evil - Feb 23, 2017

My heart breaks for all of you out there struggling. I feel like somehow I dodged a bullet. I met Craig three years after he spent six weeks in a mental hospital getting treatment for schizophrenia. One of the first things he told me was that he had schizophrenia. He seemed "normal". My mom was a nurse and didn't seem to be too concerned when sharing the information with her. I decided to go to the library and read up on it.

Fortunately, for both of us, he realized how important it is for him to take his medication. It made him feel lousy, but it was helping. He was working part-time and it was his boss who noticed something was wrong, encouraged him to get help and come back to work. I wish we knew where he was. We'd so like to thank him.

We married three years later in 1992. This year we will celebrate 25 years of marriage. We've only had one bad experience. Around 2006-2007 or so, while I was in nursing school, he couldn't reach his psych for a refill on meds, so we ended up in the ER. I never really liked her — she was a bit of a flake. We decided to find a new doctor. Big mistake. He couldn't believe Craig was so high functioning. He took him off his medications and started trying other ones. Eventually, Craig got to a point where he was not doing well. We decided to leave that doctor and go to a different one.

We got him back on his original medication — stelazine — which is a 1st generation antipsychotic that hardly anyone uses anymore due to the tardive dyskinesia (a neurological disorder characterized by involuntary movements of the face and jaw) side effect. He eventually got better, but never truly returned to his baseline before all this happened.

Craig continues to work full-time at the same job — he's been there over 30 years. I'm so proud of him. He's come a long way and it hasn't been easy. But it's been nowhere near as hard as some of the stories I've read here. I will continue to pray for all of you and hope we can offer a glimmer of hope.

Feel free to share Craig's story with your family members who are suffering with mental illness. It's so important to continue on the medications — if you can find medication that truly works. One of the difficulties with psych meds is it affects so many areas of the brain. They're all "dirty" drugs. He tried all the new strains and none of them worked. He had to go back to a first generation drug to get effective relief — and even then he's not 100% relieved. He describes it sometimes as like taking cold medicine. It helps take the edge off a little.

We decided not to have kids as my mother suffered from depression and attempted suicide a couple times. We knew there was a chance our child could be susceptible to experiencing something. 

We've been open in sharing our experience with others and hope it may help folks here. It hasn't always been easy, but I've always looked at our situation as I could have ended up with someone who was an alcoholic or abusive. Instead, I have someone who struggles with a mental illness. He knows it and he deals with it head-on. We don't know why he has it, but he does and we try to remove the stigma associated with it. I think because it deals with our brains and our reasoning, it's so much harder for people to understand. But we're working towards helping folks understand. 

Thank you for letting me share a little bit.

Craig and Mindy August 29, 1992

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Splash!

Hope you have a good weekend, everybody!

WHAT AN EFFING NIGHTMARE by Laurie Lethbridge Christmas

My son was in a locked ward psych unit involuntarily because he was a danger to himself (having schizophrenia and being off meds for eight months). He was psychotic and was losing weight because he'd not been cooking and eating. He didn't understand why he was there. He kept insisting that no one had the right to hospitalize him against his will. He asked to see a mental hygiene lawyer and, when she refused to get him out of the psych unit, he punched her.

My son was arrested and removed from the psych ward and taken to jail. He was charged with misdemeanor assault and sat in jail for a month. He was on no meds while in the hospital or the jail. I wrote a letter to the judge asking that he be re-hospitalized and he was then sent to an upstate hospital which was really a prison. He was in a section for pretrial detainees and his rights were more restricted than they were in the county jail. He sat there for eight months before they finally took him to the local mental health court down the street where an involuntary medication order was finally granted. All in all, he was 18 months without meds. Then, to add insult to injury, the charges against him for punching the attorney were upped to felony assault.  Why would the state charge a psychotic ill person with assault while in a locked psych ward? And why would a  lawyer, who is supposed to be an advocate, push the DA to raise the charges to a felony? And why did they let him sit so long without meds?  What an effing nightmare!

My son took his meds and was stable for 10 years before all hell broke loose. When it did, I started calling everyone I could find related to his issues — doctors, lawyers, and advocacy groups. Even NAMI (no help there). I was on the phone almost daily for a year. No one would help. I have a stack 5 inches thick of everyone I called. Then I had to stop for a minute. I was burned out. I even started a Facebook page for parents to no avail. This shit started in October 2012 and was not somewhat resolved until July 2014.

I still can't get over that my son sat in a psychiatric hospital for eight months without meds. My rage is often right under the surface and I have to take a break once in a while to keep my wits. After 2014 it was still a mess and it got bad again in 2015 even though my son was switched to monthly shots of abilify. He became psychotic again. The fight to get his meds changed took another year and a half. My son is somewhat stable now, but the 18-month psychotic breaks twice, caused some brain damage.

Laurie and her son

BUY THIS BOOK - by Anne Schmidt Francisco

Look what Amazon brought us today. Call it insane, screwed-up, broken or whatever you want but the US mental health industry took our son, Josh, from us by denying him access to care when he desperately needed it. The industry is like a robber, stealing the lives of people and wrecking families across the country. Our friend and author, DJ Jaffe, has been fighting the inadequate system for 30 years. Please buy it and read it and send one to your US Representative. Take it to your local library and ask them to purchase a copy. Nothing will change until we all become educated and speak up. Thanks to all for your support. ❤️

Anne and Thurman
Insane Consequences - How the Mental Health Industry Fails the Mentally Ill by DJ Jaffe

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River of flowers...

Hope you have a good weekend everybody!

ASK AND HONOR by James Callner

In 1994, I lost my brother Dale to cancer. He was only 46 years old. Being five years younger, I always looked up to him for his great accomplishments and humor. He was a child psychologist, a wonderful father to his two children, and a compassionate, intelligent, and funny man with a dry wit.

 He was my brother. I miss him daily.

Dale’s cancer was terminal, and he was hanging on one day at a time. The OCD (Obsessive Compulsive Disorder) I was dealing with at the time made me extremely anxious about getting on a plane and flying from California to Seattle to visit him. I call this “the harming fear.” Some define it as a “hyper-responsibility obsession.” In my case, it was obsessive, magical thinking that I could harm my brother by my presence, or a simple touch, thinking that I possessed some kind of deadly, magical germs. This obsession overwhelmed me. And it restricted me from doing many things with my family. This was a defining moment.
.
My brother was dying. What could I do?

I was filled with guilt and self-judgment about whether I could visit him. It would mean taking the risk of getting on a plane, flying to Seattle, and pushing through my debilitating “harming obsession” that was now in full gear. I wept for not taking the risk to get on a plane. The
shame was intolerable. I did something that I was not raised to do as a child. At night, I got on my knees and prayed to God to help my brother. It was beyond painful for all of us in the family. And my anxiety and panic went through the roof because I was about to lose my brother. I was riddled
with guilt and didn’t know if I should or could push through my fears to see him.

Then, I had an idea that would last a lifetime. I thought, “Okay. I have OCD. My brother is in bad shape. I should go there and be with him and his wife. But I haven’t asked him if he wants me to come.”

The key word was “ask.” So I did. I called him on the phone. “Dale, do you want me to come out to Seattle to see you?”

He responded quietly and compassionately, “No, I really don’t have a need to see you.” Dale was not trying to take care of me because we didn’t have that kind of relationship. I didn’t take his response as an insult, for we had a phone relationship for many years. He was simply being honest. I heard it as, “I’m in bad shape and don’t want company right now, so let’s continue our
phone relationship. I’m good with that.” And that’s what we did, with our last conversation
ending with a mutual “I love you.”

Not long after those last words, my beeper went off one night. It was my mother’s number. I knew why she was calling. Dale had passed. My brother’s memory lives on. His spirit lives on. His
energy lives on. I know at a deeper level that our last words to each other, “I love you,” will live on too.

The lesson of asking what my brother wanted and needed, and honoring the answer, was yet another tool for my own recovery and a lesson for all of my relationships. How does that relate to OCD? Those of us dealing with OCD have to open our mouths and ask for what we need
and want in order to take care of ourselves. It’s empowering.

Excerpt from James Callner's book, It's a Matter of Trust - How I Got Better from OCD with Compassion, Help & Hope.
 

SHATTERING SILENCE by Jeanne Gore

My name is Jeanne Gore and I'm the President of Families for Treatment of Serious Mental Illness, or TreatSMI for short. More importantly, I'm a mom whose son has been hospitalized 42 times in the last 14 years. He's been beaten by seven police officers in Burlington, Vermont, homeless, missing, jailed, and on and on...

I have a blog called "My Struggle for Gabriel (not his real name)" http://mystruggleforgabriel.blogspot.com where I have written sporadically over years about the never ending struggle to get help for my son. Here is an entry I wrote in February:

February 13, 2017

I'm sitting in my home on the eve of Valentine's Day thinking I should feel grateful that my son is in #ABedInstead. Instead, I am devastated. He was taken to an emergency room last Friday and then transferred to another emergency room with a locked unit for those, like my son, who are suffering from a psychotic disorder because the psychiatric facility didn't have a bed available.

I went to visit him yesterday. A nurse met me at the door and led me to his room. The room was completely stark, with white walls, a gray chair, a tray stand with some food on it and a hospital bed where my son was lying face down.

He didn't speak at first so I began speaking, trying to fill the void. He looked exhausted and just plain beaten down. I wanted to hug him and tell him how much I loved him. I told him how sorry I was that he was there and tried to reassure him that he would get his meds adjusted and be home before he knew it.

He became agitated when he asked if I could take him outside to have a cigarette and I apologetically explained that I couldn't because it was against hospital rules. The nurse decided that was my cue to leave.

All the way home and ever since, all I can think about is how angry I am that we couldn't have gotten adequate treatment for my son early on to prevent this from happening to him anymore. He had insight 41 hospitalizations ago, but instead he was allowed to go through that revolving door — in and out of hospitals that never kept him long enough to stabilize him, homeless, jailed, etc....

I fought long and hard for AOT (Assisted Out-Patient Treatment) laws and better commitment laws in Maine where we live and finally we have them, though there is still tweaking to be done. My son does have AOT now, thankfully, so we no longer have to wait for him to become a danger to himself or others before we can get him to a hospital, but, after suffering 12 years without real treatment and loosing too many precious brain cells, I fear he will never have insight again.

I live in a state where we also have gravely disabled and need for treatment standards, but no one uses them because there aren't enough beds. We know that CIT (Crisis Intervention Training) for police officers saves lives but many of our officers are not trained. Police departments in Maine can't afford the training program along with the cost of having to pay officers overtime so that each officer can take the 40 hour course. 

We've expanded our forensic hospital and our mentally ill are filling up our jails. Meanwhile, our treatment providers are struggling with a state that wants to cut the pay of their psychiatric nurses by 40%. Does anyone else see what's wrong with this picture? 

If we were able to treat people with serious mental illness, they wouldn't continue to go through revolving doors — in and out of our hospitals — and we wouldn't be arguing over the budget. We'd be saving money and, more importantly, saving lives. My son deserved so much better and every person suffering with a serious mental illness deserves so much better. 

Today I read of patients being shot in hospitals, patients being sent to jail because there are no beds, Oregon talking about passing a law that would allow them to starve their mentally ill and those suffering from dementia to death. 

We can't allow this to continue. I don't know when this country lost its human decency towards its most vulnerable citizens, but it surely has. I say we need a revolution and we need one now. We need to organize ourselves and protest all over this country immediately. We owe it to our children and their children to provide a country where ALL of our most vulnerable are treated with love, care, respect and compassion. 

Hence, the idea for the Shattering Silence March on May 20, 2017, was born. This march will be the first step in Families for Treatment of Serious Mental Illness efforts to truly bring treatment before tragedy for all who suffer from a serious brain disease. Will you join me?

To learn more about the Shattering Silence March go to www.shatteringsilence.org

Families for Treatment of Serious Mental Illness (TreatSMI) is a non-profit organization whose mission is to advocate at the federal, state, and local level for treatment, programs, services, housing, and care for those diagnosed with serious mental illnesses, and to provide support and education programs to families and caregivers.

TreatSMI is the only US based national organization that pertains exclusively to serious mental illness, rather than mental illness in general.

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Tulip time.

Hope you have a good weekend everybody!

I'M ON A MISSION - by Dede Ranahan

When I began hosting my blog last year, I set a goal for myself to post two stories and one HAPPY PIC a week. Piece of cake. Right? Wrong.

First, there's the issue of posting something versus posting something worthwhile. Anyone can offer drivel week after week. I don't/won't do drivel. 

Second, where does a blogger get her ideas? I certainly don't think of myself as an over-flowing font of blogging brilliance. That means I need heartfelt submissions from people in the know. People on the front lines of serious mental illness.

Now and then stories (like yesterday's "Dead Boy Walking") come to my blog over the transom, but that doesn't happen often enough. Some days I go fishing and troll for stories that resonate. Sometimes, for appropriate reasons, I approach someone about telling his or her story and they decline. More often, thankfully, storytellers respond positively. I make a few edits, send the edits back to them for their approval, and together we craft finished stories. Some are a couple of pages. Some are a couple of paragraphs. The blog that achieved the greatest reach, so far, is actually a video.

But I never know. As of this moment, I have one story in the queue.

Let me be clear. This blog is a labor of love. I'm not looking for sponsors. I foster no monetary aspirations. (In fact, this little endeavor is costing me money. I'm working, right now, with a web designer to get my website ready to host two blogs — the current blog and a new blog, my book, Sooner Than Tomorrow - A Mother's Diary.) So every story that comes to me puts a skip in my day. No. More than a skip. A  bounce. When my blog's working, I feel like I've found that magical place where my passion meets my talent. 

People tell me I'm on a mission. I am on a mission. We have to make the case for effective, compassionate care for the seriously mentally ill, and to do that we have to tell our stories. Stories about tragedies that could have been prevented. Stories about the need for beds and housing. Stories about outrageous HIPAA laws that prevent us from helping those we love. Stories about our missing and homeless children and mothers and fathers. Stories about our sons and daughters in jails and prisons and solitary confinement without treatment. And on and on...

We have to do this. Nothing else is working. Not healthcare. Not government. Not prisons. Not advocacy organizations. Everything's fraught with hidden agendas, bureaucratic incompetence, and self-interest. Or lack of interest. As Ron Powers says in his eloquent book by the same title, "No one cares about crazy people."

I hear many of you in the mental illness community say, "So much has happened I could write a book." I believe you could write a book. Why not warm up here? Let's bombard the public with accounts they won't be able to ignore. Send me your stories.

"There is no greater agony than bearing an untold story inside you."
Maya Angelou

        Patrick Ranahan 1968 - 2014
                    My inspiration