Thursday, July 29, 2021

Comments by askforcor

Showing 6 of 6 comments.

  • Thank you for this review. The closing sentences concerning Pete Earley’s introduction mimic my own view, as a parent who had similar experiences with his son. There is no care. Medication alone is not treatment and not care. As an earlier commenter wrote, this is “tricky.” When a person brandishes a knife or acquires a gun, it’s a game changer for a loved one or friend. What is in a person’s head? What will they do? What’s the proper course of action?

    My son was acquiring a gun. We discovered what was happening. We knew of two possibilities. Neither were we certain of. His temporary detention was a very close call in the judgement of law enforcement, experts, and the judicial system. In his prior history he had assaulted officers and resisted arrest while intoxicated. He had tried to commit suicide multiple times by different means. He had no job, was living at home, in a small town, and had just fulfilled parole in another state, where he had a diagnosis and was receiving treatment. We were requested to come get him. He had great difficulty coping with voices and thought disorders. Yet, he managed to convince a judge that he had acquired the gun for target practice. Technically, he had a right to the gun when he was released. He was very mad at us for contacting CIT and the involuntary commitment. The experience further hurt our relationship. Honestly, I was scared. Had I been a poor father? We did not know this person who we were living with.

    He was committed again. This time for a longer period. Seven days. This judge was less lenient. His commitment was all his doing, we literally made no comment during his hearing, other than we loved our son and were doing our best. After this release, he was worse than when he entered. At NAMI Family Support Group meetings, I had heard this routinely, weekly, for four years now. I now co-faciliate the group. I have friends who endure odd and thought disorders. Know many, many families.

    Our son has been stable, but super-isolated for two years now. He has no money. No longer drinks. Smokes and vapes during stressful periods, like holidays. Will not apply for SSDI, nor give us medical power of attorney. We’re his family and caregivers. He lives upstairs in our house. We have rarely seen him. All communication is very soft and through e-mail. He has done tasks for people remotely, quite expertly. His written communication is flawless. I do not believe his brain has atrophied.

    He is 27 now. All began at 21.

    I have come to accept that he might be right. Medication is wrong for him. It is his life and he did not ask for this life experience. Recreational drugs and alcohol abuse did not help him in his earlier years and may well have exacerbated his condition. He has expressed this sentiments to us. Therapists, doctors, medication, and hospitalization were not the answer for him. In NAMI, you typically hear otherwise. But, it is a good group, where people earnestly care for and about one another. We need a place to express ourselves as family members and peers.

    There is no one answer. I believe it is folly to think we will ever fully understand the mind. Not in this century. Yet, we are led by media and scientists in this direction. Science will figure it out and brain study is the key. I am a lay person. Not an expert. I am a father. Not a doctor.

    My background is biology and chemistry. I have heard many scientific presentations and read indecipherable papers. I know the difference between a good study and bad one. There are always at least two views and they compete for audiences and funding. And, it’s quite possible that neither is truth or fact, for long.

    What I do believe is that we have neglected a community-centric care orientation for the past century. Society moves at breakneck pace of expectation and achievement. Our level of human acceptance is very low. People deserve the right to live peacefully and be protected from harm. They should be encouraged to assemble freely and care for one another. Softly, lightly, gently. Objectives can still be set.

    I did not always think this way, but experience with mental illness does this to a person, family. We have neglected the social, cultural, and spiritual side of our human existence. The way we live and care about and for one another. I gravitate toward Soteria, Fairweather Lodge, self-managed care, and anything that limits the requirement for and the use of outside man-made agents, but maximizes coaching. We need coaches, support. Very labor intensive. Like Open Dialogue, which is brilliant.

    Personally, I am working on something called Hope Village, with five other families. We are just started. Our foundation is cohousing, where families form a neighborhood with the intention of looking after one another. A place of acceptance. I have been looking at different models for over three years now. We imagined a blend. For the first time I have begun to believe it will happen. Some college MBA students just finished a study for us. In their final presentation to us, you could see how touched they were at the opportunity to learn and study a complex situation from scratch.

    We simply have to do something different in our society. And, we can. We have to stop beating on one another politically. It does not solve anything. We have to find a way to channel resources into real projects, some maybe social experiments that will fail, that will examine and try community and co-existence. Again, what I have leaned out of six years of tragedy is that their is tremendous personal value to be realized for human beings. We do it every day. What’s missing, from my perspective, is community. We need more doctors of community.

  • A tough but necessary read. Thank you, Judy. I am sorry for your loss, but grateful for your work.

    Many survivors have helped me to care for my son. His last hospital experience was very similar. When het got out, I promised him that I would never, ever involuntarily commit him. But, what I wanted him to know was that his reality was something I could accept but not see, hear or know. I could not protect him from the world. But, he would have my love, a place to live, and food. I would always be there for him.

    He has managed to live two more years now. While he is isolated, he has been stable. I believe he uses the internet to help him fuel his self-care. He has managed to leave alcohol and cigarettes behind. He sleeps often. For 27, I think he has done incredibly well. It’s a long journey he is on and we will be there for him.

    What you are doing with Yale is phenomenal and good for them. I love Open Dialogue and believe it is the best platform to work from. While I participate in NAMI, I keep an open mind about all approaches. My only concern is care. And, I don’t think the pros know much of anything. People like you do.

    Thank you again.

  • Thanks for the references, Matt. There is also a really good interview, with Krista MacKinnon, that I heard on Madness Radio. This approach to crisis and therapy could really help many families who are not sure what to do. I like the work of Will Hall and other survivors who show another way.

  • Viiu,

    Thank you. Very considerate. It’s a long journey for everyone.

    I am working on a housing community option that supports all concerned. Ever since our family started down this road, it struck me that the missing elements were community care and acceptance. Our society is too short on patience.

    As individual human begins, we never asked to be born into this world, it stands to reason that we not deserve but come here with our individual rights and liberties. We should honor them in every law we construct. I am not a big fan of top-down solutions. People, all people, are much smarter than they are given credit. it would not surprise me in the least if someone in this thread or on this site, and who suffered greatly over their lives, saved mankind. Saved this world. I wish more people would be open to this possibility.

  • Thank you for your kind and informative reply, Rossa.

    Pete Early is great. Crazy was the first book I read on the subject of mental illness and our country’s so-called mental health care system. The article you reference adopts the LEAP approach that Xavier Amador writes about in his books. The key is forming a partnership, as describe. Xavier has a video on his site that shows a father and son coming to terms. That is one I would hope to achieve with my son.

    I should disclose that I have been a NAMI Family Support Group facilitator for about a year. Been attending this group, weekly, for almost three. Have two friends in recovery, former NAMI Peer Group facilitators, who I visited weekly for about a year to try and understand their experience and make a connection. My oldest son was actually allowed to film them for a future documentary project we started. My youngest had helped us in filming and perform transcription before he withdrew to his present isolated state. He liked doing it and it was the kind of work he wanted to be do. Remote.

    Where I connect with Matt is, I was never enamored with medication. Read many of his sites. (I slo like Peter and Ginger Breggin of Ithaca, NY.) However, I recognized that it worked for some when combined with therapy. It’s all about helping a person fulfill their lives. So, establishing the trust that you describe is critical. It’s critical to all human connection. Once we lose trust, it’s tough to get it back, unless both parties desire it.

    I realize that I missed opportunities. While I don’t beat myself up about it, I know so much more about the condition than I did. I needed to have read Amador’s book and take NAMI’s Family to Family course years ago to be prepared, even though I would have eventually become skeptical of neuroleptics. The Finnish method of Open Dialogue makes the most sense on approach to crisis and recovery. They resort to medication last and in controlled doses.

    Recently, I finished Jackie Goldstein’s book about Geel, Belgium and more. For two years I have also been looking into housing and community design solutions. I tend to look at stigma as more acceptance. It’s softer and implies more working together. I like the Fairweather Lodge model (circa 1963). Know the people well there. Been to 6 lodges. But also, I knew about cohousing before mental illness. So did my youngest son, who liked it. With my local NAMI families, five os us, we are looking into developing a cohousing community on the grounds surrounding the Eastern State Hospital, the first mental health hospital built in North America. Some MBA students at the College of William and Mary are supporting our team, which includes both family members and loved ones in the discussion.

    All of this is a long response. Somehow family members and their loved ones, or peers who come together, have to find a way to work together, while recognizing the need for independence and privacy. I have concluded from reading much on the subject that government-based solutions are not the answer. My instinct is that families and communities are.

    Thank you, again. And I wish you the best.


  • Matt,

    Thank you for your eloquent work.

    My son received his diagnosis six years ago. We all floundered, with many difficult consequences. As a result of his experiences, I have pursued many avenues to try and be supportive. One was to accept that he did not want to take antipsychotics. He experienced no relief. The medications you list were all administered during periods when he was “unstable” to “stabilize” him.

    Currently, he lives with us. Upstairs. Isolated but stable. He has been uncommunicative with us for about a year. Occasionally, he will work on a computer or someone’s phone for them. But, for the most part, his communication with the outside world is through a computer. Seldom has he left the house, but he has a couple of times. Recently.

    He is 4 years younger than you. Personally, I believe time is on his side. I could regret listening to so-called professionals, but there is no sense going backward. What we can offer is the comfort of a safe place to live, meals, and our unconditional love. I believe his abandonment of alcohol has helped his state immensely. It would really set him off. He would lose complete control. He has figured this out, I believe.

    If trauma or abuse are the source of his negative experiences, I would love to figure out a way of bringing the right therapy into his world. ( I know that his reaction to illicit drugs was also disorienting.) The problem for the emotionally attached is that we are emotionally attached, which may be counter-productive to his recovery. To facilitate this connection is something that would help. I have not yet figured out how.

    While we do not hear from him now, almost three ago, when he was living in another city. Alone. He wrote so eloquently about his experience. You got the realize a real sense of psychosis. It was so well done. Where he is today, I am unsure, without his sharing anything with us. When his mother did see him early one morning, She was shocked to see how “clear” he was, even though he used few words and did not want to interact.

    I believe that he really needs us as his caregivers. He marginally takes care of himself( not sure he brushes his teeth, but he takes daily showers) and his environment. But, I believe we are on the right path and pray that we will have contact again.