TRAPPED IN A MAZE by Kevin

Sometimes a few words, said by someone you love, can unintentionally bring forth the most horrid of nightmares. My mother recently mentioned to me how my brother, who is struggling with mental illness, “knows something is wrong”. It was said with no real emotion or emphasis and the conversation quickly moved on, but I have not forgotten those words.

Does my brother truly sense that something is wrong? Is he trapped in some maze fighting to find a way out, a way to correct the trajectory of his life? Are his delusions and seemingly random actions his way of trying to get back to the life he remembers? When he could pick up the guitar and play all night or talk to my mother about anything, though usually it turned to politics until 2 in the morning? Does he remember these encounters or perhaps a sense of them?

I assumed they were lost to him like his love for basketball, like his love for hiking and his love of trying to hit me with tennis balls when my back was turned. I was more at ease when I thought of him wandering in a haze, focused on his delusions and writings with no real care of the past or what was lost. One can't lose something if they don't remember losing it in the first place. But, if he does remember, the pain of that loss is something I cannot comprehend.

My tears remind me how much I love him.

A poem my brother wrote for our mother

A poem my brother wrote for our mother

THE WAY SOCIETY TEACHES US TO THINK ABOUT SMI IS WRONG by Nikki Landis

Nikki and Kevin

Nikki and Kevin

Another hospitalization. Please keep us in your prayers. 

I always question how much I want to put out there, but not talking about it reinforces stigma. Kevin's brain isn't working right. It's just another organ, folks, with a disease just like diabetes or heart disease. Unfortunately years of stigma and the "mental illness" myth has severely impacted research and treatment. 

Does our society allow 80-year-old patients with dementia decide they don't want to take their meds and live on the street? Or do we make sure they have a warm bed, a roof, food, clothing, and medications? There is almost no difference in symptoms between someone with serious mental illness (SMI) and someone with dementia/Alzheimer's. But nobody says, "He has the right to be homeless and refuse medication" about someone with dementia. 

Someone with heart disease isn't accused of being heartless. Everyone recognizes the heart that pumps our blood isn't the same thing as the heart we fall in love with. When a brain is sick, it isn't the same as the mind. Kevin's mind is still in there. It may not be able to control his brain malfunctioning, but it is completely separate from his actual brain. 

We call it mental illness, but it does a great disservice to the patients. Their mind, the part that loves and cares and wants to be happy, is still in there. There are many disease processes that affect thinking that aren't stigmatized. Yet I know dozens of families that are going through heartbreaking situations with SMI in their families and are scared to talk about it. 

I've never seen the fear of Parkinson's patients that I see of mentally ill patients. How many people know that Schizophrenia and Parkinson's disease are the same disease process? Hypoglycemia is to Diabetes what Parkinson's is to Schizophrenia. Simply different sides of the same coin. Over 50% of Parkinson's patients experience psychosis.

So while Kevin is in the hospital fighting a sickness that is trying to take his life, please take the time to look differently at the woman in the mall having a conversation with herself. Or the man pushing the shopping cart down the street that hasn't showered in a week. They are absolutely no different from the dementia patient in a care facility, or the Parkinson's patient in a warm bed, except that our society doesn't see them. Our society gives them "the right" to live on the streets hungry and alone. 

And don't forget the veterans who risked their lives, many of them giving everything except their lives, who have been left to fend for themselves by a government that signed a contract to take care of them. There are thousands of veterans being mistreated in "Behavioral Health Units" at VA hospitals across the country. As long as our government (and every single one of us that has a voice) allow the VA to even say the phrase "Behavioral Health" in regards to our veterans with brain diseases stemming from chemicals, burn pits, controversial medication practices, PTSD, military sexual assault (which is rampant, people), we are allowing the mistreatment to continue. 

I can't change the world. But maybe, as I sit here looking at my beautiful children who love their father despite his brain not working correctly, I can get a few people to change the way they look at things. The way society teaches us to think about SMI is wrong. The seriously mentally ill (neuropsychological disease, brain disease), are not happy living as though they don't matter. That's a lie everyone tells themselves so they can keep ignoring the problem. People with SMI have families who love them and have tried to move mountains to help them. There are laws to protect their "right to be sick," even though society wouldn't allow someone with any other disease process that significantly impairs thinking to exercise that "right."

MORE FEEDBACK FOR A MOTHER'S DIARY by Dede Ranahan

I have so enjoyed all "sooner than tomorrow" posts. Today's diary post mesmerized me. I loved Patrick's discussion about the poetry of our lives. I was touched by each and every paragraph of today's post.  J.A.

QUESTION:
If I give you the email address of someone, can you subscribe them to your blog? I was telling a friend about your blog/diary and she wants to link on.   G
ANSWER:
Yes. Send me your friend's email address and I'll subscribe her to one or both blogs as she wishes. Send to dede@soonerthantomorrow.com. It's also possible to subscribe to my blogs on my website by entering an email address in the Subscribe box on the right side.

You are a stunning writer. Understatement makes many times more horrible. Awesome - awful, real, deep...must read. Must subscribe. Beyond heartbreaking, my friend.  Swannie.

 

Please share my blog/book with "other wayfarers who might catch a resonating echo while wandering in my woods." Thanks.

COMING UP THURSDAY, SEPTEMBER 21, 2017:  FALL 2013

Fall is an earnest season. In fall, nature reflects on itself and summons acceptance.
Dede Ranahan

"From California" by Gary Thompson
On John Muir's Trail
Bear Star Press 1999
For Patrick Ranahan

SEPTEMBER 18, 2013 - OCTOBER 1, 2013: Aging Can Wait * Real Change in the Air * Who's on First? * Silence * Old and Cranky * Off * Helena * A Pleasant Day * Today's News/Tomorrow's Rewrite * Before and After * Odds and Ends * Worth a Try * Too Much Fun

Pat and me 1969

Pat and me 1969

MORE STORIES FROM ACROSS THE USA - A COMPOSITE

Comments in response to Teresa Pasquini’s “Shattering Silence” campaign (https://www.change.org/p/mary-gilberti-and-nami-board-of-directors-join-families-advocates-of-the-4-in-shattering-silence-about-serious-mental-illness).  2017

"My son has schizophrenia. He committed a very violent crime that was totally out of character for him. That was when he was twenty. He was found not guilty by reason of insanity. The court forced him into treatment for 6 years and then released him home. He refused to take his medicine and slowly but gradually became more violent at home to the point that he was arrested for beating up his older brother. Since then, he has been jailed numerous times for breaking our order of protection we had to take out.

"When he is on his medicine, he is nearly back to normal. Laughing, helpful around the house, and he is social. However, he does not think he is sick and will take his meds for a while but then quits. Then the spiral begins again. He is on the streets now unless he is back in jail. He needs treatment and not jail.

"The patient's civil rights should not include people with a serious mental illness. He has been judged by the social security administration as unemployable due to his illness. That alone should be enough to force treatment or assist in his treatment in a half-way house setting once a person like him is stabilized."  TENNESSEE

"Stray animals are treated better than people. We see a dirty, disoriented animal and prompt action is taken to heal it's wounds and provide a warm safe place to heal emotion and physical wounds.

"Humans though... My brother, languishing in severe delusion and hallucinations (but civil rights intact), died behind a dumpster, not too far from Disneyland, the Happiest Place on Earth. No one seemed to even acknowledge him. He was among the 4% of severely mentally ill people whom are considered "blight" and are criminalized in a misguided belief that it is a US citizen's born right to be sick and die from torment of a brain illness after bouncing from streets to jails to hospitals to streets again. WE NEED CHANGE!"   CALIFORNIA

"My brother is in prison, he has mental illness and is delusional. Seven years in prison has made him much worse. He will come out in three years and be 60 without a penny to his name. Intervention could have kept him an active part of society. As a family we tried but were unable to keep him out of harms way." NEW YORK

"My family member has been immensely helped by Assisted Outpatient Treatment (AOT) and Assertive Community Treat (ACT) team providers. Preventing our family members from further brain damage, by using AOT to assist in their care when they cannot recognize their illness, is humane and required if you love them. Ignoring symptoms of relapse only until AOT is a last resort is unconscionable for us as a society and unforgivable for us as family.

"I receive phone calls from families seeking advice because they didn't know about AOT and their ill family member ended up lost or in prison or worse, dead. This is the reality of mental illness that those who talk about "recovery for everyone" ignore. Not everyone experiences mental illness the same way and not all methods of treatment work for everyone. I support all of us working together but do not support exclusion of the sickest among us, nor do I support using already scarce funds for programs and organizations that are working to the detriment of medicine and scientifically proven evidence-based programs.  Families need to be heard. KENTUCKY

To be continued...

Photo credit: Chris Blakeley/Flickr

Photo credit: Chris Blakeley/Flickr

UPDATE ON SHAYLON: IT'S NOT REALLY GOOD NEWS by Laural Fawcett

Okay,  so here we go again on the merry-go-round of horrors. I have an update about Shaylon. It's not really good news. 

Shaylon, my son, has had a number of psychotic episodes which led him to harm himself and others. Severe visual and auditory hallucinations caused him to leave home and end up on the street. He recently spent a year-and-a-half in jail (he was released in June 2017) because he thought a pedestrian passerby was attacking him and trying to set his feet on fire. This occurred in San Francisco where he often ends up when he is hallucinating. For some reason he, and many others like him, are drawn to San Francisco. I kind of don't blame them. It's a pretty nice city to be in.

I just finished my training as an Emergency Medical Technician (EMT). I have a new job but, essentially, I'm homeless and couch surfing until I get into permanent housing somewhere. It's not the easiest thing to do here in the San Francisco Bay Area where my son has been incarcerated and denied appropriate housing and treatment.

In the last couple of weeks, I showed up at Shaylon's two court hearings. (He was picked up for failing a probation check-in.) What a total, farcical, miscarriage of justice and waste of my time except for the precious opportunity to get a glimpse my son. He was medicated but obviously in psychosis and not well.

The judge repeatedly said, "We don't want you here. You don't belong here and you need to stay away from San Francisco." He didn't speak to other criminal defendants, prior to my son, in such a condescending manner. In fact, other defendants were offered programs and assistance. My son was told, "We can't keep monitoring you." My son's probation officer was reassigned and his new probation officer wrote up a travesty of a report asking him to be extradited to Fresno. The courtroom erupted in laughter when the judge said, "Contrary to popular belief, Fresno is not a foreign country so we cannot extradite him." Neither treatment nor acknowledgement of my son's medical diagnosis were offered. Compassion was in short supply but immature snickering and cruel comments were plentiful.

The court told Shaylon to leave the city — permanently — and ordered him to be released to the streets, again, at an unknown time. I was ignored and marginalized even though the public defender tried to alert the court that I was present on my son's behalf as advocate and caregiver. I wasn't allowed to speak.

I had to travel to Fresno that day to finish my old apartment walk-through to end tenancy and get my much needed deposit back. But my needs and my son's needs were not considered.

Now, once again, Shaylon's whereabouts are unknown.

The public defender's department is saying that the probation department is responsible for providing access to treatment and housing services.The probation department is saying that the public defender's department is responsible for providing treatment and housing services. Meanwhile, no treatment or housing services are being provided by either.  Behind the scenes I discuss how to implement said services with my son's prior assigned probation officer. It remains to be seen.

Why are people with neurological brain disorders being incarcerated? Why isn't my son getting treatment for his psychosis?

Medical professionals and others should be asking, "What is the purpose of the health care and mental health care systems?" In my opinion, the purpose of the healthcare system, and this weird, dangling, anomalous part of it called the "mental health care system," is to bring a person to optimal health. That can't be done in the criminal justice system.

Some of the scariest, most dangerous patients I deal with, as an EMT, have dementia or Alzheimer's. They're medically fragile, confused, and unpredictable. They require tremendous amounts of care and resources, and can wreak havoc on the healthcare system and those who try to work with them. We don't let them wander the streets in misery. We don't discriminate against this population the way we do the seriously mentally ill.

I stand alone. I'm indignant about the injustice against a person, with a grave disability, who happens to be my son. The court forces me to abandon him to street-life hell and homelessness. The court is telling Shaylon to disappear. He's being stripped of his humanity.

*See previous blog posts about Shaylon - June 20, 2017; June 26, 2017; July 3, 2017.

 

Shaylon homeless on the street. Photo taken by a friend who later lost track of Shaylon.

Shaylon homeless on the street. Photo taken by a friend who later lost track of Shaylon.