In the nine years since our son was diagnosed with a serious mental illness, one of my coping strategies has been to read, read, and read more. After awhile, authors and researchers began sorting themselves out in my head—there are the ones that are so-so, the mostly awesome ones, and…the rock stars!
The rock stars are writers who have a profound impact on my thinking about mental illness—they publish books and articles that I recommend to other parents of those with mental illnesses and often have a unique slant on a topic that has not been addressed by many others.
Dr. Xavier Amador is one of those rock stars.
His book, “I’m not Sick, I Don’t Need Help” directly addresses anosognosia (i.e., lack of insight) in people with unstable psychotic illnesses. He established the LEAP (Listen, Empathize, Agree, Partner) Institute to train healthcare providers and caregivers in a technique aimed at getting patients to accept and stick with treatment.
Lack of insight or anosognosia is what often prevents those with serious mental illness from getting and sticking with treatment, endangering themselves, and exasperating and frightening those around them.
The talk was from 7:30-9:30 p.m., which made for a pretty long day considering the sessions started before 9:00 a.m. that morning. Nevertheless, the large room was crowded when I arrived. Dr. Ken Duckworth, medical director for NAMI, stepped up to introduce Dr. Amador and promptly began talking about a hockey team!
I soon realized he was presenting one of several NAMI honors that were awarded during the course of the conference. Honestly, my mind was wandering, especially since the recipient was a Canadian NHL team—the Vancouver Canucks. The only ice I see where I live in Central Texas is in my freezer and I know nothing about hockey.
But, as I was mentally rolling my eyes at this delay, I heard Duckworth mention a Canuck player who died of suicide in 2011 after a long struggle with depression—Rick Rypien. By February of 2013, the Canucks had engaged all seven Canadian teams of the NHL in their “Hockey Talks – Building Mental Health Awareness” campaign. The program included arena messages, PSA’s by big tough hockey players, social media outreach, and stickers on their hockey helmets. A brief film about Mr. Rypien and the Canuck’s PSA were shown at the beginning of the Amador session and many of us in the audience were mesmerized.
Their suicide prevention campaign has had a profound impact on men and boys and is going to save lives by helping them talk and seek help. The Canucks plan for this campaign to happen every February and hope to include the remaining NHL teams by 2014. I was moved by the touching tribute and now know how to pronounce “Canuck”.
Obviously a big fan of more than hockey, Dr. Duckworth called Dr. Amador a “NAMI rock tar” when introducing him and his presentation of “Relationships: Where Treatment and Recovery Begin.” Amador proceeded to tell us what anosognosia is and what it is not.
It is a genuine unawareness of symptoms like hallucinations and movement disorders, not simply denial. Illustrating it, Dr. Amador led us through a sobering role play to demonstrate how anosognosia feels to a person experiencing it. Despite having read about ‘lack of insight’, the demonstration greatly increased my understanding.
The take-home message was that if a person with serious mental illness has someone that listens without judgment, respects their point of view, and believes they would benefit from treatment, their chances of recovery are greatly increased.
Persons with mental illness often isolate themselves and need genuine friendships. Simply teaching a person about their mental illness does not increase adherence to treatments.
Dr. Amador was inspired to develop these techniques because of his frustrating and even infuriating moments with his older brother who had schizophrenia. He tenderly described his brother’s gentle personality and how close they were in a large blended family. When his brother developed schizophrenia, a young Xavier was “put in charge” of seeing that his brother got necessary treatments—he was training to be a psychologist, after all.
But, for seven years, he and his brother bumped heads: His brother did not want to be treated, because he did not believe himself to be ill, and Xavier angrily asked why in the world he wouldn’t accept treatment! Wasn’t it obvious that he needed it? Finally, he began changing his approach. And, gradually, the LEAP techniques were developed. And his brother stayed with his treatment and stabilized.
Dr. Amador demonstrated the LEAP technique in another role-play that involved what he calls “reflective listening”. I thought that I fully understood reflective listening, but I was wrong. In reflective listening, one repeats what a person is saying, without doing any reality testing, interjecting statements of empathy, or omitting anything—even if it feels uncomfortable. You don’t think to yourself, “Gosh, this guy’s thinking is really off.” You merely validate that you are hearing what a person is saying. It is difficult, because of a fear that reflecting psychotic beliefs may make things worse or represent dishonesty. But, with detail I cannot provide here, Dr. Amador explained all of these issues.
At the question and answer session, I told Dr. Amador that after reading his book a couple of years ago, I had been unsure about the LEAP process, because it required that I relinquish control of the dialogue when discussing my son’s illness with him. I mean, I am his mother and he is the one with a psychotic illness. How does that make sense? I told Dr. Amador that hearing him talk in person greatly lessened my concerns.
He then said something profound: “I think what you are saying is that you have moved from feeling like you are giving up control to realizing there are things you can’t control. Surrender to win.” Like in any good rock concert, I got goose-bumps.
I encourage anyone who has a loved one that is resisting treatment to read Dr. Amador’s book and visit www.LEAPInstitute.org for great information and videos.
Beth Meyer
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Beth you rock. Amador and Early are Rock Stars. Thanks for this great convention coverage.
I listened to Xavier Amador at a NAMI NYS Educational Conference several years ago. He did a role play with a lady in the audience to demonstrate what anosognosia is like for the person experiencing it. It was a clever way to teach family members about lack of insight in schizophrenia. I enjoyed reading your post. Thanks.
Terri
Dr. Amador’s book saved my own sanity. Dr. A’s book opened my mind up and helped me to deal with my older brother’s schizophrenia. Through Dr. Amador’s book, I’ve learned to put myself in my brother’s shoes with more compassion & patience. I can remember my own “hallucination experience” in childhood when I ran such a high fever I was delirious, blacking out and unable to sleep because of some terrifying hallucinations. Even fifty years later, I can still remember the sheer terror and panic I felt during those brief moments of delirium when my brain was not functioning and I was not quite able to recognize “reality” from “hallucination.” During that fever, those hallucinations were as real as can be to my brain so I have a tiny, tiny inkling of what my brother might be going through during his hallucinations. I thank Dr. Amador’s book for opening my mind and helping me understand this disease in order to help my brother better. Thank you Dr. Amador!