Saturday, October 10, 2020 saw our first “Living with Voices Challenge” co-hosted by New Orleans City Councilmember Jason Williams and facilitated by iDecisiongames. We were joined by a diverse group of participants including family members, service providers, attorneys and policy makers. While we expected that the exercise would touch people and grant them empathy by helping them experience how it feels to live with voices, we were less prepared for the outpouring of gratitude and humility from people who – many for the first time in their lives – were able to experience the difficulties their loved ones struggle with on a continual basis.
Created by Luke Kramer, of The STARR Coalition, the Auditory Hallucination Simulation exercise closely mirrors the real life experience of people living with delusions and consists of several surveys and questionnaires that participants were asked to complete, while hearing voices. Mr. Kramer created the simulation by interviewing individuals who are in treatment and managing schizoaffective disorders. From the interviews, he learned that the tone and intention of the voices was often environmental and changed depending on whom and what the sufferer was exposed to. He also learned, which was very surprising to many of our exercise participants, that the hallucinations aren’t always disturbing. One of the men he interviewed told Luke that the “voices” often told him jokes and were quite funny.
The most rewarding thing for us at Healing Minds NOLA was hearing the stories of empathy and understanding that were achieved from this small seven minute exercise. Read highlights below!
We are thrilled that both Councilmember Williams and Representative Aimee Freeman, who participated in the exercise, are working to bring this experience to more decision makers.
Thank you for your continued engagement and support of our work!
Janet, Director – Healing Minds NOLA
Session Feedback
One individual was crying as she told us how, for the first time in her teenage sons’ entire life, she could finally understand how difficult and debilitating his illness truly is, how much he must suffer just to get through the day, as she could barely make it through seven minutes. It touched us deeply as she called the exercise “a great blessing”.
Another participant had physical symptoms from the exercise, her blood pressure raised and her breathing got shallower as her anxiety grew throughout the experience. She confessed that she never understood why people living with SMI couldn’t just get and hold down a simple job, why they ended up on the street. This experience, however, opened her mind. She realized the difficulties of filling out an application, let alone what it must be like to hold down a job, while hallucinations speak obscenities and threats.
People were also able to ask both Luke and Janet Hays (Founder & Director of Healing Minds NOLA) questions. One question was, “how do you help someone who lacks insight they are sick or are unwilling to get treatment help? In all the cases you’ve seen, what was it that made the difference and got someone back on track?”Luke and Janet’s answer was the same. It’s generally the result of one person who truly cares. In the successful cases they had both seen, it was that one person who stuck beside them, took the time to build a trusting relationship, refused to abandon or give up on them, that finally got the sick individual into treatment, whether that be voluntary or involuntary outpatient treatment.
Additionally, Luke commented on the need for understanding when it comes to coping mechanisms. He is a staunch believer that you should not criticize or admonish safe and healthy coping mechanisms. If talking back to their voices helps the individual, let them do it. If continually listening to music or having noise cancelling headphones on is what helps them face the day, why take that away from them? Luke gave an example, one man he knew suffered from horrible and grotesque hallucinations. One day the man put on his sunglasses and one of the lenses popped out. He suddenly discovered that the breadth of his hallucinations was cut in half, giving him tremendous relief and comfort. This gentleman started wearing these glasses continually and this simple, albeit strange, coping mechanism allowed the man to interact with life more than he had in a very long time. His caregiver, however, took him to Wal-mart one day and told him to remove his glasses as it looked ridiculous and they wouldn’t walk into the store with them looking so strange. Luke was taken aback and argued, “those sunglasses were probably the only thing allowing him to go to Wal-mart in the first place! So let him wear the glasses!” Luke reminded the participants that, on average, those who suffer from serious mental illness die twenty-five years younger than their “healthy” peers; so to allow them to explore what helps them and encourage them to do it. Janet and Luke talked about the work of Dr. Xavier Amador founder of the LEAP Foundation [Listen, Empathize, Agree and Partner] as a resource. They recommended his book, “I Am Not Sick and I Don’t Need Help: How to Help Someone with Mental Illness Accept Treatment”.
Additionally, Mr. Kramer spoke about what people can do to be advocates and how they can approach legislators in an effort to get changes at the policy level. He stated that there are two things he brings up when he approaches legislators regarding mental health policy. First, he brings up the social impact: how many people in their state suffer? How many of those people are currently incarcerated, homeless Etc.? Secondly, he brought up the economic impact: how much money would governments save by treating people before they were dangerous? How much more money would that person be able to contribute to the state’s economy if they were healthy? These, and similar questions, are what we need to bring up to our legislators as those who suffer from serious mental illness are so excluded from the conversation due to cognitive impairments.
Finally, Councilmember Williams ended the exercise by sharing a personal story about his beloved grandmother who died prematurely from breast cancer. Because of the shame that was often associated with cancer during her time, his grandmother never asked for help or treatment until it was too late. Over time and with hard work we have changed the conversation around cancer and taken away the shame associated with it. Now we must do so with mental illness…we must normalize the conversation.
We were so touched and impressed by how this challenge went that we are looking at a way to do it again. Additionally, Councilmember Williams brought up the idea of using it as an educational tool for Law Enforcement, something Mr. Kramer has done in other states.
“This would be a wonderful tool to help empathize the mentally ill to Law Enforcement and help them understand that they are not being belligerent, they are sick” as Mr. Kramer said. “Mental illness is the only illness whose symptoms get you locked up in jail and not in treatment. It’s time for that to end.”
We agree!