ROCK BOTTOM IS NOT DIGNITY. HELP US by Julie Fast

There is much confusion around mental health and when someone will ask for help. I often hear this: "He will get help when he is ready," or, "She will finally say yes to meds when she realizes the damage bipolar is doing to her life." 

No. This is not how it works with SMI — serious mental illness. 

Mental health is not addiction. The idea that a person has to hit rock bottom before they will ask for help is one that might work for alcohol and drug abuse — but it never works for SMI. Here is why: 

1. Most people with SMI have a lack of insight (anosognosia) that comes and goes depending on our symptoms. I fight this lack of insight regularly and I'm someone who has enormous insight as compared to others. If I suffer with lack of insight, imagine what it's like for people who haven’t spent the past 20 years on management. 

2. Denial is not a part of SMI when a person with SMI is really sick. Denial implies that a person knows what is happening, but chooses to ignore the signs. For example, a person with a severe alcohol dependency might have total knowledge that if he keeps drinking, he is going to ruin his liver, but he keeps drinking despite this knowledge. There is no judgement here, but this is denial. In SMI, a person can have teeth rotting out of their head, long, dirty fingernails, matted hair, and a sleeping bag for a bed and still say, “There is nothing wrong with me. You are the one with the problem.” 

There is no rock bottom for us as rock bottom requires self-awareness that is simply not available when we are sick. 

Don't expect this from someone with SMI. Those of us with bipolar disorder, schizoaffective disorder, and schizophrenia need people and a society to make decisions for us when we are too sick to ask for help. Without this, our rock bottom is death. 

3. The whole idea of individual rights is skewed when it comes to SMI. The idea of rock bottom is based on the idea that individuals are always able to make a choice about life or death situations. I completely, and I do mean completely, disagree with this and believe in society over the individual when it comes to mental health treatment. We are not in our right minds when we are sick. The concept of individual rights doesn't apply to someone who is not in his or her right mind. 

If you love someone with SMI, you have tough decisions to make. Waiting until that person sees the light, knows they need help, asks for help, or finally hits rock bottom means you might see the person you love lose everything or die. 

Get involved, change HIPAA, think of our society and work with me to get help for people at home and on the streets who are too sick to get help. I hope that people at the ACLU, people in the anti-psych movement, and those who believe in individual rights above society rights can see that the world this creates is not sustainable. 

I want society to make decisions for those of us with SMI. I believe in required mental health treatment, anti-psychotic shots, and safe places for people with SMI to live. 

We can work together to create long term treatment facilities and homes for people who are ill. They were called asylums for a positive reason — a place of refuge. We need them again. Rock bottom is not dignity. Help us. 

The situation in these photos is what led me to write this piece. I was in my car and looked over and saw a man fall and hit his head. He then threw up. No one else stopped and I questioned if I wanted to get involved. Portland, Oregon is completely out of control when it comes to homelessness. The majority on the streets here are seriously mentally ill. 

I stopped and helped the man. I knew not to touch him, but I talked to him and said I was calling 911. The dispatcher asked me to see if he was alive and asked me to stay until the paramedics showed up. I found out that his name was Scott and he was 30.  He was living on the street. I could see his garbage bag with a CD player and his shoes. As I talked to him, he rolled in a ball under his shirt. 

When help arrived, they didn’t look at me, thank me, talk with me, or give me any indication that they needed information from me. They are so used to this that they acted as though someone who looked like he was dying on the street was normal. I’m not judging them. Just observing how truly terrible it is in Portland. 

The young man tried to punch and kick the paramedics and they said he had to calm down. He finally did and accepted help. The cost of this one incident will run in the thousands of dollars. The hospital will not be able to do anything due to HIPAA laws and Scott will be released back to the street in a few days. I wouldn’t be surprised if I saw him again today. 

I have to cut my emotions off from my work. That is what I did in this situation. I turned off my heart and let my mind do the work that was needed. Someone had to help and this time it was me. 

Note: Julie is a writer at BP Magazine for Bipolar and a blogger at Psychology Today.

TIME TO GET GUARDIANSHIP by Sherri McGimsey

There came a point in Matthew’s illness that his doctor flat out said, “It’s time to get guardianship.”

I drove down the mountain from the veteran’s hospital and started applying for guardianship that same day. It was rough. The tears, the uncertainty, and the sadness were heavy. I want to thank everyone who helped me when I walked into the courthouse and asked, “How do I get guardianship of our son?”

The doctor had been telling us we would have to do this, but it’s a difficult decision to make for an accomplished adult. It’s heart-breaking to stand nose to nose with a veteran with serious mental illness and take his rights away. He’s survived so much and still is, but we weren’t going to let our son die with his “rights on.”

Anosognosia, also called "lack of insight," is a symptom of severe mental illness. It impairs a person's ability to understand and perceive his or her illness. It’s the single, most prevalent reason why some people, with schizophrenia or bipolar disorder, refuse medications or do not seek treatment. Our son has anosognosia.

(Anosognosia according to Wikipedia: Anosognosia results from physiological damage to brain structures, typically to the parietal lobe or a diffuse lesion on the front-temporal-parietal area in the right hemisphere, and is thus a neurological disorder.)

Double click on the link below if you want to better understand the impact serious mental illness has on families, especially mothers.

Sherri’s YouTube video

Matthew

I FEEL INCREDIBLY BLESSED by Amy Kerr

My son is twenty-one and has schizophrenia paranoid type, ADHD, and dysgraphia (inability to write coherently, as a symptom of brain disease or damage).

For the first 4 years of onset at age fifteen, we went back and forth to hospitals, through med changes, — so many I can't count — anosognosia (a condition in which a person with some disability seems unaware of its existence), 3 different psychiatrists, trouble with the law, and 3 different mental health organizations with "wrap around" services. Rinse and repeat, rinse and repeat.

I read Dr, Xavier Amador's book, I Am Not Sick, I Don't Need Help, and used the LEAP (Listen, Empathize, Agree, Partner) approach. My fiancé and I did NAMI's twelve-week Family to Family class. I read every medical book, article or blurb on my son's brain illnesses. Slowly but surely his medication cocktail worked, he started to understand he had a serious mental illness, and the fog of anosognosia lifted.

I gave my son his meds in the morning and in the evening everyday without fail. I'd stand and have a conversation with him to make sure he wasn't cheeking them. He got better and better. We moved and I thought it would trigger him, but it didn't. The house, with so much natural light, makes it impossible to sleep all day, He's back to a normal sleep schedule — almost. Most days he's at peace. His new room makes it impossible for him to barricade, and he's stopped putting knives under his mattress.

So I've started letting him take his own meds. He tells me he's taken them, and even told me when one of them was running out. (That's huge!)

Yesterday I read an article from the National Institutes of Health (NIH) about some studies that are being done (NIH is not too far from my house) on schizophrenia and cognitive loss. My son's cognitive loss is absolutely awful and, at times, painful to watch. I asked him if he'd like to be part of the study and help others. He became angry "You know how long it's taken us to find these meds that work. They'll make me go off of them and I'm not willing to go back there."

He walked away agitated but for me it was huge. He acknowledged the meds work and had insight. Today, I celebrate this like he's just received a college degree. If he never gets any better than this, I couldn't be happier. Though it may sound strange, I feel incredibly blessed.

WHAT ARE YOUR FAMILY'S NUMBERS? by Deborah Fabos

Deborah's son, James, and her grandson, Sean Michael.

My son suffers from bio-neurological brain disorders. Without the right treatment and support, his medical condition prevents him from realizing that he has a serious illness. The untreated symptoms of his brain disorders control his thoughts and his actions. His untreated symptoms also control our lives.

My son has schizophrenia, anosognosia (in laymen’s terms, "lack of insight" or "lack of awareness" that he is ill), a history of Capgras Syndrome, a history of command hallucinations, and PTSD.

So what does all this translate into? A preventable tragedy that was almost impossible preventing.

What are our numbers? 1:6. That’s our family’s conservative ratio.

Now what does this ratio mean? It means that my son represents the one (1) who is suffering from his illnesses. The six (6) are the other people in our family who are directly connected to him.

Our lives have been significantly affected by his untreated or treatment resistant medical illness. We live with constant emotional stress from the daily trauma and drama of his severe symptoms —  including psychosis and crisis evaluation teams. We experience situational mental illness, like depression or PTSD, due to the hopelessness and isolation of caring for someone with a severe brain disorder when they're not being properly treated and their symptoms are not under control.

We've lost wages from jobs we've had to give up to care for our loved one and from having to move from one place to another due to stigma. We've missed chances of advancement at work and taken lower paying positions in order to be available to meet the needs of our son. We've faced family stress that could lead to divorce and further financial and mental decline of the entire family.

It means that my son’s illness has affected more than just him. It's also impacted his school system, our local sheriff’s department, the juvenile courts, and our relatives who helped provide financial aid to get him on the ‘fast track’ to treatment.

His illness dictated his and our lives — how we spent our time, our money, and our emotional resources. There was nothing left over for our needs. We were all consumed trying to save him, but we're among the lucky ones. In spite of the odds against us, our family stuck together and did what we needed to do to secure his compliance to the right treatment.

What was the cost for his intervention and treatment? Here is a start at some of our other numbers:

Lost wages: I quit my job at DreamWorks and later at Disney on a union job that paid me $70,000 a year with full benefits. I was the only one who could care for my son.

Mental Health: I didn’t have any. I lived in constant high stress of being attacked and threatened by my son along with the stress from the fear of losing him, and the stress of not being able to find timely treatment for him. I paid not only with money, but with my mental and physical health.

Probate Conservatorship: $6,000.

One month in a dual-diagnosis facility before his SSI started up: $6,000.

Qualified therapist who didn’t take insurance: $160.00 per hour once a week.

Equine therapy which worked the best from all the therapies we tried: $160.00 per session per week.

‘Fast Track' — by-passing the waiting list for medical recipients and getting into an outpatient treatment facility that held the most promising form of treatment but didn’t accept our insurance: $250.00 per appointment for two years until, finally, they accepted our son's Medi-Cal.

Blood monitor company: $150.00 per month. We’re going on our seventh year now.

Licensed nutritionalist: $120.00 per visit.

Independent blood test for mercury and other toxins: $180.00.

The list goes on and on. Our son's been in therapy since second grade to work with the behavior we were trying to deal with daily.

We spent and lost thousands of dollars. We have little retirement saved and my husband and I are 57. It was worth every penny and every sacrifice. When we look at and enjoy our son today, there's no price we can put on his life or on how close we all are now.

The problem is, why should we have to pay such a high price for medical treatment for our son? What about the families who don't have the resources we did to secure early intervention and compliance to treatment? What happens to them? What are their numbers? How much worth can you give to a life?

What if my son decides to be noncompliant in the future? What would our fate be then? All this affects and still concerns my whole family. My son’s illness isn’t just his illness. It’s a 1:6 ratio in our family. I’m not counting my brother’s suicide at 15 or my mother’s issues and how they impacted us.

What are your numbers?

There are no statistics that include family numbers in their studies. We're the ones they don’t know about or talk about. We're more invisible than the ones we advocate for. It’s up to us to unify and speak out in one voice for what we need — for our rights to get appropriate treatment for our loved one's medical condition.

It’s their illness but It affects us all.

LOOKING FOR JOY (CONTINUED) by GG BURNS

ANOSOGNOSIA -- #1 ENEMY   by GG Burns

I echo every word you wrote, Dede. It seems that I have more friends of children who have suffered with a brain disease and are now free, (passed), than I do with those who have figured out a way to recover. 

My son has "suffered" for most of his life. Nothing was easy for him (or us — his family), even though he was bright and full of life and joy until his brain illness took over. We tried everything. Twelve long years of IEP special accommodations in the school system; special diets, special vacations; (with as little stimuli as possible); special cocktails of meds; (some worked, some made him worse while others were like a miracle cure). For a while, in his late teens, the future looked good. He was adjusting and transforming into a responsible young man with enormous dreams.

Yet, as my son grew older, his desire to be normal, to be free of the labels and the "special world" we'd built for him became the enemy. He broke away from his life of special accommodations like an animal in chains. Once he was free of his chemical straight jacket, he refused to return. He was higher than a man on cocaine. The mania and impulsive reckless life was what he wanted. In his world, he was king! He could now do anything and there were no rules or consequences. And even when his recklessness and abandonment met handcuffs, locked doors and bars, he didn't seem to notice because it forced him to sink deeper into a total psychotic break from reality. 

Overtime, as my son's illness rapidly progressed, my own health declined. For almost 11 years I have battled PTSD, anxiety, and painful autoimmune diseases. My son is trapped in a place that is worse than death -- the carousel of insanity, the revolving door that leads nowhere. It just keeps him from killing someone and then spits him back out to the streets ... untreated! 

We’d never treat a human being with Alzheimer’s this way, but yet, the USA abandons the sickest people in their country everyday to live in homeless shelters. The senseless system of “self-directed care” --  a recovery bullshit model developed for addicts not for people with serious brain damage -- forces people who are at their worst to hate their own parents! It keeps us from communicating with their medical providers even when they are hospitalized! Their medical providers are trained to tell our sons/daughters that we were the ones who made them sick! It’s worse than death for many of us. 

The more I try to help my son, the more determined he is to refuse treatment that would restore his sanity. He sadistically and verbally abuses me and there is simply no way to have a conversation or to even meet in person. He calls and texts with extreme threats to end my life. I, in turn, go through extraordinary measures to have him committed and the state hospital kicks him out in less than 3 days. In this crazy “NO-CARE” world we live in, it is all about his rights to refuse. I lay in bed at night wondering when will this ticking time bomb finally blow? I ask myself how many people will blame me for his death or blame him for mine?

My son is constantly angry about everything that he has not been able to do in his short life.
He blames his parents!
He blames the banks!
He blames doctors who diagnosed him years ago!
He blames the government!
He blames the hundreds of mental health providers who have "attempted" to provide him some small level of care in spite of the fact he doesn't believe he has an illness. 

In my mind, my son's "anosognosia" (lack of awareness to ones symptoms) will always be the #1 enemy. We have gone to war with this debilitating symptom, making it a household name in our attempts to lobby for state/national parity and system changes that would "require" someone like my son to agree to treatment in spite of the fact they don't believe they are ill. 

Until our civil liberty laws change, my son’s brain will continue to deteriorate! It is a costly, unjust and inhumane way to die! Brain disease and cancer are both treatable. Some recover, some don't. The difference is that patients with cancer usually realize they have an illness.

You ask how do I find joy? My faith and earth angels (friends who understand) help me realize I must take care of myself in order to be there for my son -- even from a distance. I find comfort in painting, gardening and supporting others. I fight with ever determined ounce of life I have for legal policy changes that might breathe a longer life into my son and others like him before it is too late. I rest when I can. I pray. I weep. 

I am a Mother of a gifted young man who is surviving a serious brain disease called schizophrenia in a world that allows him to die a slow painful death -- untreated.