Hope you have a good weekend everybody!
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Photo credit: Dede Ranahan
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Photo credit: Dede Ranahan
Hope you have a good weekend everybody!
Eva
I've debated submitting this for a while. A lot of people think childhood mental illness doesn't exist. A lot of people tell me it's just normal kid stuff. It's not.
When we give birth to our children, we expect a wonderful childhood. We have hopes and dreams. We look forward to watching them learn to ride a bike, go off to their first day of school, and experience the awkwardness of having a first romantic partner, however innocent it may be. That was me in October of 2008.
It's currently August 2017 and I'm wondering if my daughter, Eva, will even be able to finish a full year of school because she hasn't ever really finished one. In kindergarten, we first entered the world of psychiatric hospitalization. She made it until the last four days of kindergarten. In first grade, she was pulled out on an extended medical excuse a couple weeks before the end of school. In second grade, she was placed under a court order and pulled out of school a full month early.
Because, you see, Eva's been diagnosed with childhood-onset schizophrenia. And for whatever reason, February to June are the worst for her. Nothing stops you in your tracks faster, as a mother, than your 7 year old with a feral yet blank stare in her eyes and a Santoku knife in her hand, ready to charge. Or barricading herself in your living room screaming strings of words that make zero sense. Or pounding her head into a glass window so the voices will stop. Or taking a butter knife and showing me exactly how she plans to end it all. So the voices will stop. So the chaos will stop.
My daughter's had two suspensions for intentionally trying to injure staff at school. Her teacher said, "The child disappeared out of her eyes and something else took over — a hijacked brain making it impossible to be a normal 8-year-old child."
Eva's never known a real childhood. All she knows is psych hospitals, doctors, and medications. Nevertheless, we love her — her dad, three sisters, and I. We are her warriors. We are her protectors. We take her abuse because we know she doesn't mean it. We all understand she's not a physically affectionate individual. But she shows us affection when she draws us beautiful pictures, when she decides to be more social and play Barbies with her sisters, and when she makes a paper tiara and puts it on Daddy's head and dubs him Princess Daddy.
We never expected this. We never asked for this. But this is what was given to us in life. It's not easy. It's often frustrating, emotionally draining, and physically exhausting. But Eva's my daughter. My life's blood. And I will do what I need to do to make sure she can attempt to have a childhood.
He was the little boy who wouldn't eat until you had lunch also.
He kissed every animal and crustacean and reptile he ever saw.
He bounced on my bed and sang in his baby lisp, "When I Gwow up, I'm having Wots of Babies, Cuz I Wike Them!"
He swung on our swing butt naked, singing, "It's Good To Be King,"
He loved God and at 5 announced, happily, that one day he'd see his real Father, and he couldn't wait! He'd be "where everything was beautiful and there was never any pain."
He got his own feelings hurt when his puppy got scolded and when a classmate with disabilities was chosen last.
He cried so hard the first day of kindergarten, because there was too much to remember and he "forgot to make a friend."
He purposely partnered on school projects with the kid with no partner.
He refused to do homework for a teacher who made racial remarks toward the Mexicans in their class.
He told me in second grade he'd thought of a way to never have to go to college and leave me.
At 9, his goal was to marry a best friend, a girl who wasn't concerned with fashion. He thought, practically, that picking one out sooner rather than later was a good idea.
At 10, he went to the store and bought shoes for his friend for Easter who he thought was wearing "girl shoes."
He defended his rescue dog Butters' destruction of most of our shoes and half the house with, "You people don't understand. He's just upset cuz he got left."
At 11, he told me he might have bad news for me. Boys couldn't date their mothers, he'd discovered, so our Friday night movies had to stop.
I will never get over what happened to this child, the torment he endured and the beautiful life he was cheated out of. He reminds me of the Cummings poem, "i sing of Olaf, glad and big," especially the last line — "he was more brave than me: more blond than you."
Laura and Zac
Zac
Zaccaria Pogliano was born August 1, 1991. He died January 18, 2015. Zac suffered from serious mental illness.
Photo credit: Dede Ranahan
Hope you have a good weekend everybody!
UPDATE: Ryan called his mom at 3 a.m. this morning and let her take him to the hospital.
One of the many things misunderstood about schizophrenia is that people think it's a disease or that it automatically makes the person dangerous. The negative stigma it's gotten makes it harder for the ones who have to live with it. They are people's sons, daughters, mothers, brothers, sisters, fathers and friends.
The illness itself can actually be a gift. There are metaphysics behind the illness. There are cases of schizophrenia corresponding with chakras. Once someone with schizophrenia reaches spiritual maturity, they can be the most compassionate people because they explore many different perspectives. They're usually open minded people. A schizophrenic mind can be intelligent, empathetic and creative despite it's drawbacks. It's a matter of perspective within the person who has it. People with schizophrenia have a hard time focusing on a mind set and staying consistent. Their dial always turns. They can be all over the place. That can be improved with spiritual maturity and dedication. That involves a high level of self awareness.
It's hard for people like me to maintain a sense of self. Our minds are a broad spectrum. People who don't have schizophrenia usually just stay on one channel their whole lives, maybe wandering a little bit. People who have schizophrenia usually do a complete 360 degree spin on the dial. It can be extremely frustrating when they have a realization of self or knowledge just to have it all of a sudden slip away. Imagine spending hours building a complicated puzzle just to see all the pieces fall away and disappear. They're easily distracted in their own minds. Isolation can be a best friend and worst enemy at the same time. In isolation, they don't have to deal with the outside world but they have to deal with being alone with their thoughts.
Schizophrenia can be induced by trauma. At some point in their lives they may have had their personal boundaries violated. Many with schizophrenia die from suicide or poor health before they grow old due to not knowing how to cope. It's a search for sense of self. It can be very frustrating being an enigma or outcast of society. There's usually a lot of shame and guilt involved. No two people with schizophrenia are the same and they shouldn't be treated as such. It is one of the most misunderstood and mysterious mental illnesses on the planet. A lot of people don't even research it before projecting judgments on the ones who have to live with it.
Joe IV
Day 5 of 90, maybe 56, for good time. My son's jail time that's left after being kicked out of mental health court. No more probation after his days served. No felony conviction, thank God. Misdemeanors only. That frees him. He is 22, soon 23. He started mental health court at age 19. It kept him alive.
Heidi and Mitch
I'll never forget the night when Mitch called from his apartment in a panic. He was sure there were men in his house with guns. I told him to call the police immediately. He first took a baseball bat and broke open his bedroom window to escape and went to the neighbors' house in the middle of the night and called the police. He let them in his house. There was drug paraphernalia. We were trying to see if he could live on his own with his disability. He did well for almost a year, but the neighborhoods that those on disability can afford are drug infested. There were two heroin deaths in the apartment below my son's. But that was then.
Today, to get by in jail, Mitch imagines that jail is the only world that exists. If he thinks of his freedom, he says he will fall into depression. So, to him, there is no outside world. He says that helps him cope. I fear he will likely learn to be a better criminal. I want him to be a better person. They do give him his antipsychotic meds, but jail is no place for the mentally ill. They need to be in treatment. I worry jail will become familiar to him. Imagine a mentally ill person having to create an alternate universe for themselves because the one they are in feels so dangerous. How pathetic is that?
We send him money on his commissary account so he can buy food so he doesn't go to bed hungry. Ramen noodles are gold.
His last cell mate was a skin head. Swastikas were tattooed on his skin. Mitch said his cell mate's skin was peeling and landed like dust. The skin head's skin would fall into a pile on the floor. Mitch found the dead skin and this cell mate disgusting. He's so glad that one is gone.
His current cell mate talks to himself. The cell mate sits on the metal stool in the cell facing Mitch's bottom bunk just looking at him. That's now frightening Mitch and he wants to do something about it. I encouraged him to be curious and not confrontational. Mitch finds it creepy. Me too.
I need to remember to send him isometric exercises for his shoulder which was recently surgically repaired.
Tonight, there's to be a movie for the pod. He says it's currently a good pod. But it's always changing.
That was Day 5.
Once done with his time in jail, Mitch's through with mental health court. He didn't graduate from it. They basically kicked him off because nothing seemed to help him. He was on and off his meds, on and off the streets, in and out of hospitals, and in and out of jail. People with serious mental illness live in their own world. The best we can do sometimes is to meet them where they are with delusions, paranoia, and attempts at self harm. They need love and support. Please help break the stigma of mental illness. Tell your stories. We do not gain in shame.
One day at a time. Thank you to all the family, friends, and mothers I've met along the way in this journey. I'm forever in your debt for being a light in this complicated dark journey. I especially want to thank Sim Gill and the judges in the Salt Lake City Mental Health Court for their compassion. We must fund more programs for our seriously mentally ill and those with co-occurring substance use disorder. Keep peeling back the layers.
With all my gratitude, now on Day 6.
Thank you Adam Ozuna, Tommy Kraus, Robert Bogues, Wendy Nielson Conway, Alec Bang, Tommy J. Oberst, Laura Webb, Pamela Mullins, Sue Swaner, Carol and Richard Evans, Nicholas Short, Carol Anne Schuster Evans, Caroline Gilson, Carole Strong, Paul Gentner, Cindy Phelps, Debbie Pierce St. Clair, Carmen Kolyer Weaver, Melody Florez, Debbie Moorehead Thorpe, Dede Moon Ranahan, Dr. Douglas Gray, soon to be again, Dr. Kevin McCauley, my mother, The Treatment Advocacy Center, and most recently, a few members of the LDS church and so many more for listening and not judging. For sharing your stories. Power in numbers. @abedinstead
Photo credit: Marisa Farnsworth
Hope you have a good weekend everybody!
Once upon a time, when Casey was very sick and demonstrating symptoms of his illness in the courtroom, his overwhelmed public defender started defending Casey by speaking out on an entirely different case. I raised my hand and said, "He has the wrong file, Your Honor."
A large bailiff came near to me so I apologized and slunk down. When his defender began speaking again, it was as if he was speaking from a routine script with no sense of what was happening to this beautiful young man's life. My son was disappearing right before our eyes.
I raised my hand again and said, "He has schizophrenia, Your Honor."
The large bailiff came and stood in front of me again, this time with his arms crossed in front of him. I apologized a second time and watched as this amazing judge got it. The prosecutor finally got it, too, and came to speak with me. I asked, "Why do they prosecute patients for displaying symptoms of their illness?" He put his head down and shook it.
One day in our trip down behavioral lane. I remember every one of them.
Casey Alan Campbell Age 5
Casey Alan Campbell age 23
October 29, 1985 - October 1, 2009
Those beautiful days!
Our fairytales did not end well.
But, oh Dede, the beautiful days we had with these amazing loves are forever.
So loving and aware of others.
I sometimes looked at Casey and thought to myself,
Where did you come from, you beautiful-hearted little soul? 💖
Diane
Dear Senator Harris,
I want to thank you for your robust response in regard to Health Care. I believe you when you say you will fight to protect and improve health care for Americans via improving the ACA as well as other efforts.
One thing you wrote caught my eye. "I’ll also continue to fight for robust federal funding of scientific research to cure our rarest and most complex diseases." I'd like to address a disease that is not terribly rare, but it is complex and contributes to homelessness and the criminal justice system in Los Angeles and other urban areas. That disease is schizophrenia.
My son, Josh, had his first break when he was a senior in high school. He had been on a high success trajectory--most valuable player on his swim team, co-captain, AP and honors student with a high GPA, active socially, and so on. However, he gradually started retreating and acting bizarrely until one day I got a call from the police saying he was trespassing, defecating in someone's back yard, and I should come immediately to see the wounds on his arms and legs.
You can imagine the terror I felt, and have been feeling ever since that fateful call in 2009. Because his first hospitalization was a short two weeks, and every subsequent hospitalization has been shorter; because his poor judgement has led to a series of stays in Twin Towers (LA County Jail Medical Unit); and because even court mandated treatment has been insufficient, today he is out of treatment, off medication, and wandering the streets in search of cigarette butts he can smoke the ends of.
Schizophrenia has been a puzzling disease for centuries. It's been noted in many cultures, and it's been responded to in a myriad of ways. Some cultures elevate a person with schizophrenia to visionary shaman. Others provide hospitalization and supervision until the patient has stabilized and can realize a reasonably rewarding life. Our culture has been sorely lacking in our response.
There is still not a cure, and I believe it is time that we work for a cure. We've managed to make great strides in treating cancer, heart disease, and AIDS -- three fearsome human diseases. But we haven't yet found a cure for schizophrenia. There are hundreds of people with schizophrenia living on the streets because they cannot function independently, whether treatment is offered or not. These people resist treatment, and their resistance is certainly frustrating, but it is built in to the disease as a symptom called anosognosia, in which the brain does not understand that its function is compromised.
Great strides are being made in understanding the disease, thanks to President Obama's push towards researching the brain and its functions. Light is being shed on possible causes and information about how the brain works is slowly being disseminated through the culture to anyone who wants to learn about it.
I hope you and your staff will become champions of curing schizophrenia. So many of our citizens are affected by it. A cure represents a triumph over a centuries-old, and possibly a millenniums-old scourge of mankind.
Thank you for your concern.
Sincerely,
Diane Rabinowitz
Josh