A SYSTEM OF LUCK AND HEROICS, NOT A SYSTEM OF CARE by Teresa Pasquini

Juggling Balls: When I got the call from Danny yesterday that he was safely transferred, I could not believe the joy in his voice. My son is a sweet, joyful person but it has been a long time since I heard such a tone of jubilation from him. It was the tone of freedom. Freedom does indeed ring. 

From the time I left court on Thursday until 9:30 a.m. yesterday, I was holding my breath that everything would fall into place and the court order would be followed. There were so many balls being juggled by so many people in so many counties. If one dropped, Danny would have been stuck in a solitary cell for months waiting for #ABedInstead. 

The agreement had been in negotiation for weeks. So many people were trying to reach a settlement and get Danny to a therapeutic environment. The Public Defender was tenacious in her defense that Danny was not likely ever going to be restored to competency. The DA wasn't ready to concede that because the statute allows for more competency training. But, he had developed compassion and was no longer seeing things in black and white or prison orange. But, bureaucracy and rules kept getting in the way of logic and compassion and balls kept dropping. And, Danny sat in solitary waiting for a lucky break or the system to figure it out. He was suicidal. He was losing hope.

Last Monday, I received notice that there was a bed in place for Danny and it would be held until Thursday. We weren't due in court until Thursday morning. I asked if court could be moved up. It couldn't. But, everyone started juggling balls to make sure that this bed didn't slip away. There were heroics at play and a lot of luck. That has been our story for 15 years. My son's life has depended on a system of luck and heroics instead of a system of care. 

This is the bed dance that gets played all across our country while the human log jam waits. If one ball drops or if one system refuses to twist a rule or find another way, then human beings sit in solitary losing hope. Who can blame them for giving up? 

Danny was awoken yesterday in a solitary cell in the Napa County and transported to his new home in Merced County. A Sheriff Deputy from Napa County agreed to come in on his day off to transport Danny. Had he not agreed to do that, my son would have been behind bars by himself, waiting. And, he would have given up hope. Instead he is happy and experiencing joy. 

This nightmare started in November of 2011. Danny was hospitalized on Thanksgiving Eve. As we approach Thanksgiving 2016, my son is thankful for all who refused to settle and who never gave up on him. I am too. Our family needed this to go right and we are so thankful for all who supported us and our son. 

At times, we must all break the rules, question the rules and refuse to settle for the status quo. We need to get personal, get real, speak up and tell our stories. We have to become ball jugglers and partners with all who are fighting the good fight with us. If a ball drops, pick it up and keep going and never, ever give up. Our humanity depends on it. 

#MyDannyMatters #nevergiveup #ABedInstead #Right2Treatment#PassHR2646 in the Senate #now !!

JESSE AND ME by Val Greenoak

I’ll never forget, after Jesse got his initial diagnosis of schizophrenoform disorder, he was sent to a special school. He was sixteen. When we were asked to meet with a social worker, we thought it would be more of the same as we had been trying to understand what was going on with him.

The social worker asked us to detail the problems we had with each other. Jesse and I looked at each other and he said, ”I don't have any problems with my mother.” I agreed, saying we had no problems with each other except those that the illness caused. I am not saying that if he didn’t have schizophrenia we wouldn’t have had problems. It's just that any psychological problems we might have had if he was not ill just paled before the illness. 

The social worker posted in the notes — which I saw after his death — that Jesse and I were both in denial. Not so. We were so close. He appreciated so much that I always reached out through his illness to reassure him. He felt I understood him. We both knew we were up against something huge.

During his lifetime we really made progress. He was better at 24 and getting a handle on things. If we could have made it till he was in his late twenties I could have brought him home. But no. They told me I was trying to hold him back after he went through a two month training and I said it was too soon to put him out in a board and care facility. He was too ill, I felt, though I had no idea how completely unsupervised he would be.

My experience is that Telecare calls houses “board and care” when they offer no food. (The dictionary definition of “board” is food.) Because of a Telecare mistake about Jesse’s SSI check, they didn’t take money out of his check for feeding him.  They neither fed him nor gave him money to purchase food, and he wasn’t able to access free meals at the food kitchen blocks away. He was too disorganized to get there.

Telecare got lazy the week after Christmas and failed to give him his meds. They were supposedly training him to take his meds on his own and they didn’t check on him for five days.

The day before he was killed, the other patients in the house told Telecare he needed to be 5150’d. The staff ignored this warning and, when they discovered their mistake, a LVN tried to correct Jesse's decompensation by giving him an anti-depressant — a drug I’d told his doctor was not ok to give him. I’m a psych tech so I knew this, but he was conserved so I had no say.

From an unsupervised kitchen, Jesse picked up a sharp knife because he’d become afraid. I didn't know at that time that Telecare’s crisis intervention team had been unfunded. Why would they tell me? They called the cops saying he was chasing a patient with a knife which the patient testified Jesse wasn't doing. The cops came and gunned him down after calling him out of the bedroom where he was sequestered.  They killed him less than two minutes after they got there. 

I didn't live close enough and wasn't notified until too late. Watch your kids parents even if they are conserved. Don't ever imagine that a for-profit system will truly care for them. Trying to claim your personal problems are psychologically based is only one way the system marginalizes parents, especially when your children, adult or otherwise, are profoundly ill. 

Blessings on all who are dealing with this illness and the system that's first motive is profit. I keep you all in my heart!

HAPPY PIC

Photo Credit: Marisa Farnsworth

All decked out and ready for the holidays...

Hope you have a good weekend everybody!

ANYONE WANT TO TELL ME WHY? by Sherry Hunter

This is my son one year ago.

Not much has changed in one year, to be honest with you -- with the exception of a few home visits a few months ago which brought me much hope that he was getting better and that maybe, just maybe, he was on the road to recovery from this shitty disease called schizophrenia.

But my hopes were shattered, once again, when I attended his 65th clinical. Yes, sixty-fifth. He's been in this crap hole state hospital for over five years. He may have a fresh haircut now, and may not be wearing a shirt around his neck or gloves on his hands, but other things are surfacing.

Thoughts of death, not wanting to be here (who could blame him for that?). What kind of life is this that he's living? One where he hears voices telling him to do horrific things to himself and others. One where he thinks people are not who they say they are. Do you think that's a good way to live? I don't. I wouldn't wish this disease on anyone.

Why does my only son have to have this god awful illness? Why? Anyone? Anyone want to tell me why? And please, whatever you have to say about this, do not say it will all be worked out in the afterlife ... because that, my friends, is a cop out answer and I don't buy into it for one second.

Nor do I believe God gave this to my son to live with. Because quite frankly, if there is a God and he did give this to my son to live with, I want no part of that God. How incredibly mean and heartless to put someone through something like this.

I'm just really sad today. We can't ever give up hope but damn it's hard.

See ACCEPTANCE by Sherry Hunter, October 19, 2016, on this blog.

NO ONE ASKS. SHE'S BEEN ERASED - by Ronni Blumenthal

We're new to this world. That's not to say there weren't signs or moments that made me wonder and then push away the thought. Middle school and our first counseling. It didn't seem to help.

The first months of high school and everything seems fine. Mari goes to football games and has friends. I'm excited. My son had severe ADD and other challenges and never participated in any school activity.

Then. First the self harm and then the death of a dear cousin and then the 72-hour stay in the adolescent pysch unit. Meds, new school, counseling. Refused intensive outpatient. Grew sadder and sadder. In the new school, her "stirring of the pot" socially and setting one friend against another was soon recognized and the initial welcoming and flurry of invitations and activites came to a near total halt.

Friendless and without a sense of self, Mari invented herself a million different ways on the Internet. Some were dangerous. She got sadder and more anxious. She stopped sleeping. She cried. She stopped going to school. We changed the medication and she fell down the rabbit hole, tumbling and tumbling until I could hardly see her at the bottom.  As she happily peeled the skin off her lips, I coaxed her to shower, to move from the bed to a chair. Two and a half months and then she took off her toenails and no one had answers.

Four weeks ago we brought Mari to a facility far from home, the best we could find, and today we took our family photo for Thanksgiving and, for the first time since she was two, she wasn't there. And no one asked. Oh, you could feel their knowing thick in the room, the brother's in-law, the family friends, the older nephews and even her brother.

No one asks. She's been erased.

Mari doesn't have something we can talk about like a life threatening disease (but oh, it is, and it has been). She doesn't have a broken leg or a hip replacement. She's 15 and in a state a long way away and still sitting at the bottom of the rabbit hole, with little interest in reaching up.

At the end of the day I receive photos of my daughter with half of her smile on her face. A start. Another shows her cradling two tiny puppies recently born to the canine program. My baby. That hair. Those eyes.

Who can I send the photos too? No one asks.

She called. We spoke for a few moments and her grandparents each spoke with her. Then it was over just like that. The photo with the puppies, the way Mari's holding them against her chest, cupping the second one's head in the palm of her hand, that's where the spark of hope resides.

I will teach them how to ask. And I will tell them.

HAPPY PIC

Even more than looking at leaves, I love looking at you.

Hope you have a good Thanksgiving weekend and everybody!

JUST FOR A MOMENT by Karen Riches

Right now I'm at Burger King in Buffalo, New York, across from the Mental Health Association and their adult care area. There's a guard who's awesome. He talks gently and uses many techniques to calm folks when they're rambunctious.

I see laughing and talking. Some people are talking by themselves. Many are talking with each other but the main conversation probably isn't being followed. Some are very quiet in the corner eating. One person dialed someone and is talking into a cigarette pack.

The main thing is that they appear happy...maybe just for a moment. They're clothed, eating, and looking good.

What a blessing. I wish we could see more of this. Have a Happy Thanksgiving everyone!

Photo Credit: Eugene Kim Flickr.com
Gratitude Tag
From the Coffee Catz Gratitude Tree in Sebastopol, CA

THINGS I CHERISH AS A PERSON WITH A CHRONIC ILLNESS by May Enos

I believe every day should be filled with gratitude for blessings both big and small. Living with a chronic illness can be challenging, so I like to focus on the blessings. Here’s a list of things I cherish as a chronically ill young woman:

I cherish the relationships in my life that allow me to be whole and completely me. 

I cherish relationships where I am free to be open about my ideas, thoughts and feelings without fear of retribution. 

I cherish friends who let me to say “I have a heart murmur” just as openly and freely as “I passed my class!” I can say “I’m seeing my therapist” just as openly as “I’m seeing my cardiologist” or “I was denied disability” just as openly as “I love you.”

I cherish the moments in life where I feel completely safe, completely whole, perfectly me and confident. I know those moments are worthy of being cherished because it doesn’t always happen to me. Right now, I’m so confident and so happy. I know it is something worth cherishing because bipolar doesn’t always agree with those feelings. It will tear down my confidence and self-esteem until I’m scrambling in the dark for a little ray of light. It will make me feel worthless, helpless, hopeless, unlovable and so much more. It will make me hate myself so much that I can’t even look at myself in the mirror. So I cherish the moments when I feel completely safe, completely whole, perfectly me and confident because it doesn’t last forever.

I cherish the times I have with those I love. I may be young, but I have seen a lot of heartache in my life from the loss of loved ones. I know the pain all too well. I know the pain of wanting so badly to see someone, just to hear their voices and knowing that for an unidentified amount of time you have to learn to live without them. It’s pain and pure agony, no matter how much faith you have. So I cherish the moments, whether good or bad, I have with those I love and care about. 

I cherish my health. I live with a chronic illness. Every day my body is fighting a war it can’t win. After all, how can it win if it’s fighting against itself? So I cherish my health. 

I cherish the days my body fights an infection and wins.

I cherish the days when my body stops and actually attacks the virus instead of itself. 

I cherish my mental health and the fact that I have been able to fight for my health with such faith and sense of direction. 

I cherish my health and the fight that I am winning. 

May has a blog: Average Princess at http://averagelupieprincess.blogspot.com
May's post is also on The Mighty at https://themighty.com

Photo Credit: May Enos
May and her pets

HAPPY PIC

It's a beautiful day in the neighborhood...

Hope you have a good Thanksgiving week everybody!

EMPTY SHOES AND OUR CATCH 22 by Dede Ranahan

Hosting this blog is taking me on a journey I must navigate with humility and trustworthiness. Receiving, and sometimes editing your stories, is a responsibility I take seriously. I find myself in awe of your strength, courage and raw honesty. Some days my heart hurts after hearing of your struggles. I have to turn off my computer and go for long walks. Or call a friend. Or play with my cat. I have to pace myself so I'm not overwhelmed with sadness. So I don't give up hope that things can and will get better for my community -- the community of the seriously mentally ill.

As I say in my "Hello," my goal for this blog is to help move our stories of serious mental illness into mainstream discourse. More often than not, our stories don't get out to the broader public because of all the suffering that can bring.

When my son, Pat, was alive -- he died in 2014 on a hospital psych ward where I thought he was safe -- he never wanted me to talk about his illness. He was afraid, if people knew, he wouldn't be able to get a job, or a girlfriend, or decent housing. Sometimes he was in denial. He hated his illness and wanted, more than anything, to not have bipolar disorder. For the most part, I respected his wishes although, at times, reticence complicated our efforts to get help. Today, with my son's shoes empty and still, I've thrown the gags that muffled my advocacy work in the trash.  

Advocacy, however, is never simple. As I ask you to consider telling your stories, many of you face the dilemmas I faced. Sometimes you say, "Not now." "My daughter doesn't want me to say anything." "I'm afraid to reveal my illness." "I don't want to upset my family."

Believe me. I get this. At the same time I wonder, when we hide so much, how will we make the world fight for what should be a moral imperative: compassionate and competent mental health care? This is our Catch 22. By keeping our stories private, our trauma and tragedies stay secret too. We lose traction for getting public understanding and support.

I don't have answers. I don't give advice. When dealing with serious mental illness, you're fighting battles so confounding that, somedays, even God wouldn't know what to do. You're exhausted. But, when you can, please tell your stories. Our stories have power.