I have always found myself hanging out with people who have either one or both feet out of mainstream. In high school it was the art room and behind the stage in drama where I felt most comfortable. In college, my friend group was art school students, Deadheads and Metalheads where we explored live music and creative ways of being. (Well, in between partying, to be honest.) In short, I’ve always been a curious seeker so it’s kind of no surprise that I’d end up going to a webinar about how to support people who live in extreme states by traditional standards.
How I got into this special club of friends was not planned. My son experienced an extreme state lost to psychosis for almost 3 years during his informative adolescent years between ages 14-17. This was not experimental drug induced nor does it run in our family. He has been in his version of recovery and stable for almost 5 years now. Thus, as a parent who would walk through fire for her child like many would do, I investigate and learn. I have found a friend group with Mad in America where I have reported on others experiences and attend parent support groups.
I will be writing more of this very personal story and sharing with readers who upgrade to paid on this platform so if you are interested in being part of that development and exchange, I’d be honored. Some of these stories may just make it in to a book!
This past weekend, I attended a webinar hosted by Mad in America board members and therapists, Louisa Putnam and Kermit Cole, where we heard from Olga Runciman and Cindy Hodge who live in recovery with voices and with Sam Ruck who is a caregiver to his wife, Ka’ryn, who lives with DID, (dissociative identity disorder). This group of brave and compassionate individuals shared some of their stories and provided participants concrete ways to help their loved ones or how to help themselves. There was a mixture of parents and individuals who live with these extreme states who attended the webinar.
Cindy Marty Hadge is a person who experienced physical, emotional, sexual and medical trauma as a child. She experienced voice vision and thoughts of ending her life growing up as well. As a young adult she turned to alcohol and street drugs in an effort to make life livable. Over time she entered the mental health system, where the street drugs were replaced with prescribed drugs and the result was frequently the same – walking or stumbling through life in a mind numbing state and while continuing to experience voices, visions and thoughts of ending her life.
Knowing that peer support in the form of 12 Step programs had been helpful in her struggling with substance use, she sought out peer support for her emotional distress and experience of extreme states. Cindy discovered that she lived within walking distance of one of the WMRLC community spaces, where one of the very few HVN groups in the US was held. Within the WMRLC community she found healing and hope. By attending HVN (Hearing Voices Network) groups she discovered that there were things she could do beyond taking medication to navigate her experience.
(Excerpt from Wildflower Alliance, where Cindy provides support to others.)
Olga Runciman lives in Denmark and has written, Denmark: Voices From the Inside Out. She has worked as a psychiatric nurse and been a patient of the self-same system. She was told that she was an incurable case. She writes on the ethics of psychiatric practices and alternative ways to heal.
Extreme Cases Don’t Always Fit the Medical Model
While it may be the individual who is living with these sometimes intense experiences in full psychosis or otherwise, it is the whole family that is impacted. These people are isolated from society and so are entire families. The traditional psychiatric medical model is not a one-size-fits all and is often wrought with over medicating which can cause greater more complex state and long-term effects. When families are told that they are not the expert on their loved ones it exacerbates trauma and ability to help. In some cases, parents can lose authority over their children and are seen as barriers to their loved one’s care.
It is important to reframe what is called “treatment resistant” to what has been offered simply isn’t working. There ARE other possibilities of treatment and hope doesn’t have to be a drug with a life sentence. These individuals are the expert of their OWN experience and denial is not a great strategy to find a solution.
Gaslighting individuals of their experiences and telling them they lack insight into their illness is discounting and demeaning. This can also translate into shame and reframes their self view into gaslighting themselves of their own reality.
Structure of Support
Olga and Cindy expressed what worked and works for them. These are all nuanced and I realize it is quite difficult when you are “in it” with them especially if it is a new experience. This is not easy to witness and it is not easy to stay curious and calm. Keeping individuals safe is important.
It is very important for individuals who are witnessing a person’s extreme state to be respectfully curious within their context.
How did we get here? (I guess this would need be figured out away from the situation at times.)
Assumptions may be different than their reality. Trust them in what they are expressing and try to figure it out.
Be curious.
“I got you. I see you. I love you. It’s going to be OK. You are safe.”
While the system tells us to distract individuals from their voices, it is better to stay calm and support them.
Side note: If we look back historically, Carl Jung supported this option and worked with his patients in compassion and curiosity. He kept them safe and allowed his patients to exist in their worlds providing them with space, art supplies, gardens to walk in and other modalities. This was mostly before medication development. I think it is worth remembering these modalities from this time period.
I have provided some resources at the bottom.
Expressions of their Experiences
I have interviewed Sam and told a summary of his story for Mad in America. He is a brave and kind soul who loves his wife deeply. He has been instrumental in his wife’s healing and has saved her from a medical model which would have deepened her trauma and quite possibly institutionalized her for life. DID is defined by having two or more separate personalities that control your behavior at different times. DID can cause gaps in memory and other problems.
Sam has written a book on his experience living with his wife, Ka’ryn, as she lives with intense childhood trauma which has presented as dissociation identity disorder (DID) for many years. Sam has never brought her to the hospital, has never presented medication and has healed himself alongside Ka’ryn. The main tool which has helped Sam in caring for his wife employing attachment style relating.
An attachment theory is a psychological, evolutionary, and ethological theory concerning relationships between humans. The most important tenet is that young children need to develop a relationship with at least one primary caregiver for normal social and emotional development. The theory was formulated by psychiatrist and psychoanalyst John Bowlby
Reframing of Experiences
Recovery can have much more success when moved from the bio-medical model to the trauma-recovery model.
Stop blaming the victim for their experiences. There is a high correlation between sexual abuse and mental illness.
Involuntary injections can be counter-productive and be a replication of violence.
“There is nothing wrong with me, something terrible happened to me.”
“Not everyone wants to ‘go back’ in recovery, they want to go forward,” Cindy declared.
“A job working in fast-food isn’t recovery for everyone. Recovery is super personal and isn’t about getting rid of the voices but having a relationship with them,” Cindy shared.
Consider the possibility that those struggling have crucial messages to share about where we have gone wrong as a society.
Medication often dulls a person’s ability to experience aliveness.
Where to get Support:
If you are supporting a loved one who is living with similar characteristics, Mad in America has weekly online support. Hosted by therapists, Louisa Putnam and Kermit Cole, they provide a grounded, compassionate safe space for people to be themselves with gentle guidance. You can sign up here to attend at no cost.
I’ve provided more resources at the bottom. Thank you for being here and learning more about these difficult topics. You are not alone and if you are, you don’t have to be.
What does it mean to be a paid subscriber?
It’s amazing to have you have you as a free subscriber (and shout out to my paid subscribers!) so thank you!
I’m offering a special discounted group subscription for the month of March. Gift a subscription to someone not already subscribed and get a 2 for 1 at $47.50 per year normally $50 for a year subscription.
Here’s what a paid subscription will provide beyond the free weekly posts:
Sneak previews on essays I will be writing for my book with the opportunity to provide feedback.
Each person gets a free 30 minute Zoom session for a guided meditation session or a parent mental health resource session.
So, what do you think?