STORIES A SECRET SMI SUPERHERO CAN NEVER, EVER TELL - Anonymous

We all have secrets in our lives, intentional or not.
Some things in our lives, we are told or we are taught.
I have an SMI family member, a fact I cannot escape.
I advocate for my family member who’s had no treatment to date.

I’ve learned to keep this to myself, so not to cause my friends and family pain.
I’m not looking for attention, and his treatment is all I seek to gain.
 Loved ones said I must choose between my SMI advocacy and involvement in their lives.
I was asked to advocate alone, hidden from the family’s ears and eyes.

I’ve never needed others to convince me of what was right.
So I became a Secret SMI SuperHero working in the night.
I don’t know how to choose between all those people I love so dear.
Lack of mental health treatment for any one of them is what I fear.

My marriage has been threatened and I have been told to choose.
All because my spouse can’t see any way to win, he believes I’ll only lose.
They say they do not want to hear or see my efforts — to keep it out of their lives.
I’ll try to keep it to myself and not let it affect our family ties.

So now I’m a Secret SMI SuperHero, not saying that because I am vain.
The superpowers that I have were only born from pain.
My family does not read my posts, articles, blogs, or follow the speeches or the story that I tell.
They only care that I continue to care for them and continue to do it well.

They do not know of my SuperHero successes or when I only cried.
Someday I hope they will know me, and know how hard I tried.
Some of you would know of me — my efforts have been strong,
Yet no one in my immediate family has watched them all along.

I gave up TV, hobbies, gardening, and sleep to give me more hours in a day.
I’ve kept my efforts hidden — meetings, interviews, testimony — it was the only way.
I’ve secretly stayed up late — while my family slept — to advocate and write.
I was making signs and writing speeches all throughout the night.

Much testimony has been given and yet laws still remain the same.
Solutions seem apparent, but talk is always more about the blame.
As the years have passed my friends are long gone.
 Either they were afraid, embarrassed, or it was too awkward to go on.

Some in my family say he does not deserve help due to all that he has done to us.
They do not comprehend that treating his brain disease will be the only justice.
Others didn’t know him back when his life began.
 All our family loved him dearly and some still find they can.

Failure to educate or persuade my own family has led to my biggest fear.
How can I fail in changing the hearts and minds of the ones I hold so dear?
Some are not as willing to accept that it is a brain disease.
 They think it's a behavior that one could choose to cease.

It’s a disease of delusions that my family member tries to fight.
While he fights for peace of mind, I can only do what’s right.
I’m not the only Secret SMI SuperHero, we know they are all around us now.
We listen to all the stories and know we need to help, but how?

Sadly my loved ones do not know me. They don’t know how much I care.
They may someday need me to be that SuperHero for them and I would be there.
Yes, some of you would know me very, very well,
 But, I have stories a Secret SMI SuperHero can never, ever tell.

When all is said and done, I cannot be sorry.
I can only be the Secret SMI SuperHero that is me.

I HATE THIS CRUEL ILLNESS by Anonymous

I spent seven hours at the courthouse. They placed my daughter second on the docket so I had to stay there all day with her agitated and psychotic. She has been in our state facility for 21 months. She is one of three very treatment-resistant patients at the hospital. I just sit idly by and watch her deteriorate. They’ve tried everything they can, within their formulary, so please do not suggest Clozapine as it is not in the formulary.

The only other options are voluntary community services — which she will not adhere to — and for-profit hospitals which are useless. Her condition is worsening before our eyes. We have legal guardianship, yet cannot make her well. I feel so helpless. Surrounding states seem worse.

This is like watching your child die a slow death. The judge granted another 90 days in the state facility, and for that we are grateful because of the alternatives. I just needed to vent as I sat there and listened to her testify, incoherently, and watched her walk out of her own hearing because it made her too anxious.

The reports in court of her behaviors were so distressing — for any mother to hear — that it will forever scar me. Drinking her urine, smearing menstrual blood on her face, writing on walls with her vomit, running in halls naked, dancing suggestively in front of men, smearing her feces, flushing personal items, flooding the bathroom, and then some. She told the judge that she is pregnant by a doctor. She gave a name but there’s never been a doctor in her facility by that name. She put wire from her bra hooks through an earhole that had closed up. Social workers and nurses testified to these things and more. I was unaware of most of it until court. It was painful.

The lawyer representing my daughter berated me to make his case against treatment. But, he offered no alternative. The state provides two attorneys — one arguing for treatment. One arguing against treatment. I live 90 days at a time between one court ruling and the next.

I got a notice in the mail about an incident since court. My daughter smeared her feces in her hair and on her body. The staff had to put her in a special sleep suit.

I feel so empty. If this resonates with anyone, it’s worth the post. There is no clear answer. I realize this. I hate this cruel illness.

HAPPY PIC & POEM

TWO HUMMINGBIRDS

Two baby Hummingbirds
I’ve named them Pert and Prim,
So tiny — there are no words,
But life force beats strong in them.

I’m humbled bearing witness
To fledglings hidden in my tree,
My kitchen window gives me access
To wonders with no need of me.

Mama flits in zig-zag thrusts
To her nest with babies crying,
To throw off eyes she doesn’t trust
Predators who might be prying.

One week young and old today
Welcome to our changing earth,
We must care for it they say,
As you remind us with your birth.

Dede Ranahan

Hope you have a good weekend everybody!

http://www.bit.ly/soonerthantomorrow

BEYOND MY UNDERSTANDING OF WHAT BEING HUMAN MEANS by CJ Hanson (PART TWO)

To my twin sister, Linda Rippee,

I just came on Facebook, after taking a nap. I could barely read through your post without tears flowing down my face like a stream from a mountain top. A stream that never ends. I didn't think I had this many tears left. I feel so helpless, with my own illnesses, that I am unable to help with a physical presence. The responsibility and the experience of actually interacting with Mark have fallen on your shoulders.

Is there such a thing as survivor's guilt without having actually lost someone? I can't describe the pain I feel any other way, so I’m at a loss. I’m at a loss at the pain and suffering he endures every day on the streets, knowing that we have no legal right to force him to live with the few of us left, nor is it even possible. Knowing that we have fought for 32 years trying to help him and make his life better, and knowing that he blames us for allowing him to live as the doctors didn't believe that he would. Knowing that the laws in this county, state, and nation are against families of loved ones who suffer from traumatic brain Injury and serious mental illness. Knowing that, no matter how hard we’ve fought every day to change minds, hearts, rules, and laws, so far we have failed. We have failed.

I have such a hard time believing that we’ve failed, but we have. It matters not that we have fought every day. Every single day for 32 years. Yes, for a while he was able to live a somewhat normal life until the mental illness set in. The doctors said it would happen eventually, but what has happened to him since? The apathy of people with the power to change policies, rules, and laws is a clear indication that, not only have our efforts failed, but the lawmakers have failed. How many potential bills have failed over and over as the lawmakers insist there is more legislation now for the seriously mentally ill than ever before. That may be true, but they keep failing. Failing the sufferers. Failing the families. Failing society. No human being should have to live without options like our brother. I am having difficulty understanding anything anymore about this travesty.

Facing my own mortality only makes me feel more like a failure. I still have in my mind that 12-year-old boy who tracked me down at a friend’s house after I had moved away from home at 18, and clung to me begging me to move back home. I still have in my mind seeing Mark that day of the accident, barbecuing at Mom and Dad's house and telling us how he wasn't going to keep that motorcycle but was putting it up for sale. I still have in my mind that he was on his way to my home, in Fairfield, that night to see me when the accident happened.

Did I fail him, Linda? Did I fail him by making the decision to let the doctors try to save him? Was I wrong to want him to live? I thought I was making the right choices while I actually had power of attorney back then. I'm not so sure, now. What are we to do now? Lawmakers and officials have tired of our continued efforts and have turned their own blind eyes away from the situation. No one, who has any power to give families back their rights, or to change the laws preventing us from helping him, cares. Not really.

I have no faith in lawmakers’ motivations anymore. Not one has proven that they care enough about the families of the seriously mentally ill to truly push through what needs to be done to make a real difference. I can't stop crying — for Mark, and how he lives and suffers; for you, being the last one in our family to be able to go out and find him; for myself, for being so helpless in my own infirm condition and disability; for Mom, who will leave this earth knowing her youngest child will most likely die on the streets; for all the ignorant and uninformed people who find such joy in blaming our family; for those in the community who do care and have tried to help Mark and us for so long; for our society; for this very world.

My despair and tears are beyond my ability to explain anymore. Beyond my understanding of what being human means.

See Linda’s story yesterday, June 26, 2019. “Rewind and Erase.”

Mark

REWIND AND ERASE by Linda Rippee (PART ONE)

Today, I went and found my brother, Mark. He was lying on the sidewalk at a busy entrance to a shopping center. Cars were whizzing by. Another man was sitting there with him and, as I approached them, I could see that Mark was giving him money and asking him to count it. I was immediately suspicious. I asked my daughter to remain in the car.

I walked up quickly and called Mark’s name as I always holler his name before approaching him so not to startle him. I waited until he recognized my voice before I began conversation. Mark pulled another dollar bill from his pocket and asked me what denomination it was. I was concerned that maybe he was buying street drugs. No, that wasn’t it. Here sat another homeless person who had talked my blind brother into giving him all his money to buy a gold pocket watch. He laid out $14.00 which was all that he had. Unless that watch could verbally tell time, what on earth would a blind, gravely disabled man need with a pocket watch?

Good thing I had brought him food, water, and clothing. Mark was shirtless, but had a very heavy coat on. Today, the temperature is supposed to reach 98 degrees. I begged him to take off the coat. He refused saying the coat would be stolen. He was extremely sunburned already. The wounds on his face and around his empty eye sockets were still badly infected from two different beatings several weeks ago when he was robbed. Today, all he had with him was a small blanket. His clothing was disintegrating as he wore the same pair of pants all through the winter and spring. He didn’t have a cane to guide him. He has had 11 different canes this past year.  

I sat down next to Mark and, within seconds, it was obvious that he was delusional. He grabbed my hands and slapped them down, hard, on his leg that has a metal rod from crotch to ankle. He held both my hands down with his hands. His hands looked like leather and were cracked and bleeding. Regardless, he continued to hold my hands tightly. His entire body was trembling. He said, “We have to go back and erase each year that has passed since June 21, 1987 (the date of his motorcycle accident). Rewind and erase.”

I was shocked that he still knew that date. Yes, it was Father’s Day, but he still remembered the actual date. He proceeded to say each year backwards to 1987. With each year, he said, “Rewind & Erase!” He shook, violently, until he reached 1987. Then he grabbed and hugged me and said,” Now, don’t you feel better?”

I told him, “Yes, and I hope you do too.” He began to argue with the voices in his head, screaming that the police were implanting and growing people inside of people and controlling them. I tried to calm him and get him to eat the food I had brought him. He would take a bite, chew tiny bites, and then spit it out.

He brought up my twin. Mark doesn’t always comprehend what I tell him, but I continue to tell him the truth. CJ, my twin sister, had gotten bad news about a medical diagnosis. I shared her condition with him. He began yelling at the voices he hears and blaming those voices for all the pain and suffering of those he loves. The intent of his body language was to beat himself up. I hugged him, and once again reminded him that I love him — as I do on every visit. He didn’t want to let go and held on tight for a while. As I was saying goodby, he began crying. He said, “Someone disconnected me from my mother. They’re cutting out pieces of me.”

I slowly walked away, feeling sick to my stomach. If only I could “rewind and erase” all the horrible memories, delusions, pain, and suffering he’s had for the last three decades. Yes, Mark, I would feel better.

Linda adds: Every letter/email I’ve sent out has also been sent to the County Board of Supervisors. I’ve sent out over 1200 emails and my twin, CJ, has sent as many. Each time, we copy agencies and politicians. We’ve saturated them. We’ve sent out thousands of private messages all over the state, and made thousands of posts and comments in over 100 social media groups all over California. CJ authored the petition for AB1971* and we collected 56,000 signatures that went to the full assembly and senate. I’ve made 30 speeches speaking at public meetings. I’ve testified twice at the capitol in support of AB1971.* I’ve gone to the capitol and told my brother's story to support several other bills. There have been 12 news articles and TV interviews. Mark’s story has been published in three national blogs and used at medical conferences. We’ve friended, and are in contact with, several well-known national mental health advocates — Ron Powers, Teresa Pasquini, Leslie Carpenter, Dede Moon Ranahan, and DJ Jaffe to name a few. The Board of Supervisors are ground zero. They are aware of all that we’ve done. They stay silent and do not converse with our family. The next project we are working on is a documentary. I have many, many videos of my visits on the streets with Mark. We will make the videos available to politicians and to the public. They are undeniable. When they are shown, Solano County should hang its head in shame.

Note: Solano County has declared Mark to be competent.

*AB1971. This bill would, until January 1, 2024, expand the definition of “gravely disabled” for these purposes, as implemented in the County of Los Angeles, to also include a condition in which a person, as a result of a mental health disorder, is unable to provide for his or her basic personal needs for medical treatment, if the failure to receive medical treatment, as defined, results in a deteriorating physical condition that a medical professional, in his or her best medical judgment, attests in writing, will more likely than not, lead to death within 6 months, as specified.

See Linda’s story, “I’m Past Anger. I’m in Complete Despair.” June 6, 2019, in the archives.

Mark

'WE DON'T HELP PEOPLE HERE." by Angela McCandless

My son, Dillon McCandless, is 29 years old. He was diagnosed with paranoid schizophrenia in 2014 after we had him involuntarily committed to the state hospital here in Idaho. When he was released, we thought that medication was all that he needed.

Dillon saw a psychiatrist twice after his release. He did well for about a year-and-a-half and he thought he was cured and went off the medication. It wasn't long and his symptoms returned. We got him back on the medication but it never really worked well the second time around, and he began to use drugs and alcohol to cope. This made everything worse. We tried to get him back into the hospital but we were unsuccessful in our attempts. We went to the prosecutor over mental health and he said, “If he isn't a danger to himself or other's, it won't happen.” We tried the state hospital and our local mental health office.

Five weeks later, while having a psychotic episode, our son robbed a casino that was on the Indian reservation making this a federal crime. We told his lawyer of his illness and asked him if there was something he could do to get him some help. He said, "We don't help people here." We didn't like his answer so we met with the federal prosecutor and Dillon’s lawyer together. Instead of getting him help, they sent him to San Diego for a competency evaluation to see if he was competent to stand trial.  

Dillon was gone almost three months and, when he returned, he had lost 45 pounds. He was moved six times before making his way back to Idaho. The report stated he was competent to stand trial. At his competency hearing, the judge could see he was having problems. The judge ordered the prosecutor and our son's attorney to get a psychiatrist to see him on a regular basis and adjust his medications if needed. This never happened. (We have the audio recording of this order.) Dillon was in a county jail here in Idaho (A federal hold jail).

The physicians assistant prescribing didn't know what she was doing. She let Dillon prescribe his own medications but didn't know how to dose him. At times, the jail didn't medicate him at all and let him go cold turkey. He began to self-destruct and broke his foot. At the time of his change of plea hearing, he was unmedicated and walking on a broken foot. Later, he broke his hand. His lawyer did nothing for him. He told us the reason no psychiatrist saw our son was because the US marshal refused to pay for one, but we found out the request wasn't made. The prosecutor who was ordered to get the psychiatrist said, "Well, you don't get Cadillac care in jail."

Our son got worse and punched a guard, and the guard broke Dillon’s shoulder. Inmates called us and told us they knew Dillon was going downhill. They were requesting medications for him. He wasn't able to even get ibuprofen. We called his lawyer, county mental health, the jail, and the judge. Dillon's cellmate told us that Dillon was building a fort under his bed and hiding in it. Even the guards weren't helping him. It took the jail 60 days to X-ray Dillon’s broken foot, several weeks to X-ray his hand, and a week to X-ray his shoulder.  

After the altercation with the guard, Dillon was tased and put in isolation and tried to kill himself. He was taken, by ambulance, to the local hospital to have his wrists glued shut. After the suicide attempt, the county tried to get him into the state hospital. We made a personal visit to the county prosecutor. He was getting paperwork filled out but the US marshal refused to let him go to a hospital. The prosecutor was shocked by this.

Instead of getting him help, the authorities moved Dillon to another county jail and moved up his sentencing date. Inaccurate information about medication compliance was used against him in the pre-sentencing report. He was given nine years — two years for the robbery and seven years for use of a firearm. Pretty harsh for a first offense.

Dillon was moved from Idaho to Victorville, California. While he was there, a Dr. Doman said, “I have no idea why he was sent here. He is too sick for us to take care of him.” She moved him to the Federal Medical Center in Rochester, Minnesota. We were hoping that they would help him but nothing happened. Instead, he was in the SHU (the hole) for most of four months.

Dillon was refusing to take medication. He was given a shot of thorazine when he first arrived and he hated it. They wouldn't give him the anti-anxiety medication he wanted so he refused anti-psychotics. To insure he didn't cause any problems unmedicated, they put him in the hole. They said, “We can't help him if he won't take medication.” In the federal system, they don't have to medicate you if you choose not to be medicated. I believe it’s the same for the state.

Last month, Dillon was moved to Sheridan, Oregon. We saw him two weeks ago and he looks terrible. He’s very thin and still unmedicated. Our visit didn't go well because he struggled to answer our questions. He said "what " all the time.

None of Dillon's injuries have been fixed. They’ve healed incorrectly and cause him pain. He’s declining. The federal system is a nightmare for the mentally ill. They were right when they said, "We don't help people here."

I just wanted to tell my son’s story. We all need to speak up or things won't change. I know this is a long read and I’ve left out so much. We’re still trying to get Dillon the help he needs. We have a lawyer who is trying to make sure he is getting care in Oregon, but he can't get Dillon's medical records, and we have guardianship. They say, “Dillon has to sign for them.” We keep reminding him but his memory is poor. Dillon recently had his commissary privileges taken away. He missed a roll call and pushed a wrong button. He can't think straight without medication. The mentally ill are usually in trouble.

A few days ago, KPVI had an article about Lance Quick. He lost his life after six days in prison. He went without food, water, and his medication. How incredibly sad.

There’s nothing criminal about being diagnosed with a mental illness, but it's criminal how we treat individuals with mental illness. Our system is broken. We must get involved in advocating for change for our mentally ill.

Read Our Brother’s Keeper - a blog written by Dillon’s siblings. Click here.

http://www.bit.ly/soonerthantomorrow

HAPPY PIC

Daisy dance…

Hope you have a good weekend everybody!

PLEASE INCLUDE SMI IN YOUR PLATFORM by Dede Ranahan

Hi Mental Health for US

Just discovered you and your platform asking 2020 political candidates to talk about mental health in their campaigns. I see no specific mention of serious mental illnesses (SMI) such as schizophrenia, schizo-affective disorder, bipolar disorder, etc. Some people are not able to recover from SMI and languish in prison, in solitary, in not-so-good care homes or in their parents’ back bedroom for years and years.

I belong to a dozen Facebook groups of families of the SMI. Their stories are horrific and from across the nation. They’re not able to find help anywhere.

I want to support your efforts. I’ve been sending letters to candidates and calling on Facebook and on my blog for 2020 candidates to step up, speak about, and put forth national plans for SMI that do the following: Reform HIPAA, repeal the IMD exclusion, do brain research into these insidious brain diseases, provide for long-term care and short-term outpatient services, improve access, provide housing, supported education, and family supports. Not simply mental health. Not simply drug and alcohol addiction. Serious mental illness.

Would Mental Health for US be willing to expand its platform to include SMI - specifically spelling it out, not simply lumping it into mental health?

I hope your answer is yes.

You can read stories about SMI individuals and families — across the US - that I’ve been posting for 31/2 years on my website and blog. You can also read my own story in my book about my and my son’s struggles for over 25 years to get help for his SMI. He died in 2014 on a hospital psych ward. He was transferred, without my knowledge, out of county (lack of beds), his records weren’t forwarded with him, and I couldn’t get doctors to talk to me (HIPAA) even though I was on my son’s Advance Care Directive.

I unwittingly captured the last year of Pat's life in my book which, among other things, includes his story and many stories of individuals and families being failed by the system.

I will sign on and volunteer to help you once I’m satisfied that this undertaking includes SMI and specifically mentions it in your platform.

Thank you. I look forward to hearing from you.
Dede Ranahan

www.soonerthantomorrow.com
A Safe Place to Talk About Mental Illness in Our Families

Sooner Than Tomorrow — A Mother’s Diary About Mental Illness, Family, and Everyday Life
By Dede Ranahan with Patrick Ranahan
http://www.bit.ly/soonerthantomorrow

https://www.mentalhealthforus.net Please read this platform and send a message asking that it include SMI. Thanks.

http://www.bit.ly/soonerthantomorrow

TRAVIS & ME - OUR JUNE PRISON VISIT by Dede Ranahan

On Sunday, I visited Travis. I didn’t see him in May because our visiting day fell on Mother’s Day which I spent with family. He walked into the visiting area and, at first, I didn’t recognize him. His hair’s been shaved short — for summer — and he’s growing a beard. He looked great. I told him, “I really like your haircut. And your beard.”

We hugged and Travis said, “I finished reading your book.” (His mother, Kathy, sent him a copy.) Then he said the most perfect thing, “I love Pat. I love all his Facebook posts. He’s so funny. And smart. I think he’ll be an influencer for our generation. I copied the list of his favorite books. I’m going to read all of them.”

Travis’s eyes filled with tears as he spoke. My eyes filled with tears as I listened. Travis was clearly moved. “I totally get him,” he said. “I like him so much.” More tears.

I’m getting such heart-felt reactions to Sooner Than Tomorrow. In reviews, in emails, in cards and letters. Many have commented about Pat and his sense of humor. But, hearing about him from Travis, in person, with tears in his eyes, was mind-blowing for me.

I reached for his hand. “Thank you,” I said.

“I wasn’t sure what to expect when I began reading your book. And then I couldn’t put it down. You’re such a good writer.”

Travis is reading other books, too. He’s taking a college health class during the summer. “It’s really interesting. I’ve read the first three chapters. It’s about physical health, mental health, emotional health — about keeping everything in balance. I’m ready for these college classes. I wasn’t ready for them before I was sent to prison. My self-esteem is much better now. I know I can study and learn.”

Travis was also pumped about a basketball tournament he took part in on Saturday. His team (“We were the ‘crazy’ team. All of us have psych issues.”) beat five other “normal” teams. “We were champions for the day. We never played together before and we just clicked. Sports are important to me. I ran 10 miles (around the prison yard) for the soldiers who died on D-Day. To honor them. I’m in the best shape of my life.”

I asked Travis if there had been any more discussion about transferring him to a prison closer to his family in Southern California. He said, “They’re not going to move me right now. My psychiatrist and my psychologist are going to take me off lithium. It’s affecting my thyroid. Then I won’t be taking any medications. They want to watch me and see how I react. We’re all hoping I can function okay without meds.”

Travis likes his medical team. He thinks they’re competent. He thinks they care about him. “They like me,” he said. “I tell them about my feelings and my emotions. Not every client is open with them and they appreciate that I am.”

“I’m growing,” Travis continued. “I’m making the most out of my time in prison. I’m working out. I’m reading. I’m writing songs for our church service. I’m a better person than I was.”

“Travis, it sounds like you’re focusing on the positive aspects of being here. Do you think other inmates do that?”

“I don’t know. I don’t want to judge anyone else. Probably not everyone does. There are fights and other bad stuff happens. Being here is forcing me to know how to interact with others. It’s not always easy living with my cellie, but I’m learning about relationships. I was kind of a recluse before I came here. I managed a motel in the mountains and I spent a lot of time by myself.”

It feels like our conversations are evolving. Travis asked me questions, too. “How are you doing, Dede?” (good) “How’s your mom?” (good) “How’s The Jazz?” (good) “What books are you reading?” (Mama’s Last Hug by Frans De Waal, I Miss You When I Blink by Mary Laura Philpott, Another Rubber Chicken Dinner by Bev Chinello)

Visiting hours ended. It was time to leave. “Have a good month, Travis. I’ll see you in July.”

I always turn to wave at Travis as I walk away. He’s always waiting. And he waves back.

Travis & me - before his haircut.

http://www.bit.ly/soonerthantomorrow

HAPPY PIC

Hummingbird eggs in a nest outside my kitchen window.

Hope you have a good weekend everybody!