I Want Change

My son Dan ended his life in 2014, two weeks after a 10-day stay in the psychiatric unit of the hospital, because nobody was listening.

As a child Dan was a happy, loving, energetic little boy. I have a memory from when he was only 5 years old that shows his character. We were standing at the elevator and the doors opened. There stood a little old lady with a cane. Dan stepped inside, took hold of her hand and guided her into the hallway. That was Dan at age 5 and it was who he remained throughout his life: loving everyone equally no matter their age, race, religion or social status. He did have a special place in his heart for the less fortunate, such as homeless people — I would often find them on my couch because Dan would bring them to the house for food and shelter.

When Dan entered the educational system, which introduced him to the mental health system, everything began to change. My son was no longer Dan Kelson. He was “ADHD” at 7, “bipolar” at 13 and “schizoaffective” at 20 when he began hearing voices. It used to be that our children were considered active, not ADHD, or stubborn and rebellious, not oppositional defiant disorder. Somewhere along the way their unique personal identities were replaced with a diagnostic identity, along with a specific drug to suppress who they truly are and rid them of the unwanted behavior — all because of our fears and insecurities. We live in a society that is fearful of difference. We deny the self and the experience so that when one strays from what we understand as normal, they are thought to be ill. Stigma is something we create when we label mental pain as an illness.

By the time Dan was in his teens, I fell prey to the system that told him he needed to take meds to correct a chemical imbalance. I put my trust, my faith and my son’s life in the hands of mainstream psychiatry. But not Dan. He was so in touch with himself and had a knowing that he was just different. He saw the flaws and held on strong to the belief that he was not ADHD, bipolar or psychotic, but that he was just experiencing a different reality from our limited view of the “norm.”

Dan Kelson
Dan Kelson

When Dan was 20 I tried desperately to find help for him as he was hearing derogatory voices that at times told him to kill himself, but he was an adult and had to request the help himself. He denied his experiences when he was confronted with anyone with the authority to take him off to the hospital. He had struggled with our medical model of psychiatry his entire life and was very aware that he was never heard and that the only option offered would be medication to suppress his real feelings and experiences.

At 23, Dan was taken to the psychiatric hospital against his will. His rights were taken away, and regretfully I was a part of that action. This time he put up the white flag and admitted to the voices. I believe he held onto a last ray of hope that someone would finally hear and believe in him, guiding him to a place of wellness. Imagine how he felt when that hope was completely shattered.

He was discharged 10 days later with ineffective meds, still hearing derogatory voices and in worse condition than when he was admitted. I begged the doctor to keep him, but was told my private insurance would not cover a longer stay. As I reflect back to that time, I realize that the tragic ending to our story would remain the same had he been there longer. It’s not the quantity of care but the quality that is lacking, because it offers no option other than medication and therapy based on fear of those who are different.

Only two hours after we got home, Dan fearlessly told me of the suicide plan that he’d devised while in the hospital. He had all that time to think about it while nobody was listening. He’d lost his dignity, his identity and his place in society. He had lost the will to live.

He said he was going to make a statement about world crisis and how the world is supposed to spin on love, not hatred and greed for power and money. He said he would sit on the lawn of the White House with a sign next to him: a picture of a homeless man holding a sign that said “keep your coins, I want change.” He was then going to set himself on fire.

Dan had just left the one place that should have been there for him, a place that I had trusted, but I now had the painful realization that it was solely up to me as his mother to keep my son alive. I knew in my heart that my love was not enough to save him.

The follow-up outpatient care was no different. An appointment with the doctor was not made until an entire week later. Dan told his therapist less than 24 hours before his suicide, on a Friday evening, that he was hearing disturbing voices telling him to kill himself. The therapist’s response was, “I will call your doctor first thing Monday morning to adjust your meds.” Monday morning never came for my son.

Less than 24 hours after that visit, Dan followed through with his plan of trying to be heard in the only way he knew how. The evening before, his voice had been silenced for the last time. His story was never heard… until now. I promised Dan the night he died that I would be his voice. That he and the many others like him would finally be heard.

I wasn’t even sure what I meant that night, but within time it became clear. A few months after Dan passed, D.A.N. (Dignity and Advocacy Network) was created to shed light on what was really happening to him and so many others, and to strive for change. This was the end of Dan’s journey and the beginning of a new chapter in mine. Although Dan’s voice was never heard in this lifetime, he is the driving force behind mine as I feel him teaching and guiding me every day from the other side.

I read my son’s hospital records. Almost every day, a staff member documented a conversation with Dan and this is how it went: “Dan, you are bipolar. You have a chemical imbalance and need to take medication for the rest of your life, and these are the symptoms. Do you understand?” Every time, Dan’s response was documented: “I’m not bipolar, I’m just different.”

That was the end of their documentation, the end of the conversation, and the door was closed on my son for the last time. A quote by Emily Dickinson says it all… “Hope is the thing with feathers that perches in the soul and sings the tune without the words and never stops at all.” The tune stopped for my son and that is when he lost his last ray of hope and the will to live.

Since Dan passed, I have gained so much knowledge and insight as to what was really happening with him and so many others like him. Not just from the endless research I have done, but from how it correlated with my memories of Dan’s lived experiences and that of the many survivors I have connected with since his death — those who have recovered from the most extreme states of psychosis by using a different approach. They escaped the trenches of our medical model of psychiatry, and learned how to integrate their voices and other unusual experiences into their lives in a meaningful way. This approach focuses on holistic recovery rather than symptom treatment.

I now facilitate a weekly Hearing Voices support group for the inpatients at Yale Psychiatric Hospital on the adult unit, and will soon be starting one on the adolescent unit. This is significant as the hope is that they will not end up on the adult unit years down the road. I know my son would still be here had he been offered this complimentary humanistic approach.

There are several causes for the experience of what is called “psychosis,” such as spiritual awakening which can lead to spiritual crisis without the correct support from one’s external environment. One may enter this inner world, an unconscious place of the mind, where they encounter mystical rapture, visions of Nirvana, past life memories, an overwhelming feeling of oneness with God and unity with the universe. This is when they are thought to be “psychotic.”

They may also experience destruction of the self and the world as their two worlds collide, leaving them disoriented with no sense of self from the inner world and a fragmented pattern of society in the outer world. A spiritual transformation is trying to occur, but has gone awry for lack of understanding as to what is happening. With Shamanism, the oldest religion in the world, the Shamans go to this place in the mind intentionally to experience death and rebirth — to return to this reality with a higher level of awareness and personal transformation.

This is what Dan was experiencing while being told he was ill, all the while struggling to hold onto the belief that he was just different. My son’s pain, his comments to me along with the lyrics he left behind all echoed the details of my research and what I now know to be the truth.

Existential depression can be another cause for manifestation of “psychotic” symptoms which is similar to spiritual awakening. One begins to question their purpose and even their reality in this physical world. Past traumatic events may result in unusual behaviors. This may occur as a result of dissociating from the emotional part of a past event that was too difficult for one to face at the time. A person tucks it away in a deep unconscious place of their mind, so that after the physical event has passed the emotional part remains unprocessed. Weeks, months or years later, the unconscious material merges with consciousness, manifesting in depression or anxiety or voices, visions and intrusive thoughts.

Now one is placed into the “illness” category with suppressive drugs to keep their emotional pain unprocessed even longer. But when the story can be told, as with the Open Dialogue approach, the voices or experiences come together like pieces of a puzzle. Recovery can now occur.

We all know the famous comedian Jim Carrey, but I am sure that not many are aware that he is one of the most enlightened beings of our time. He said, “Our eyes are not only viewers, but also projectors that are running a second story over the picture we see in front of us all the time. Fear is writing that script.” Our reality is how we as an individual perceive it. When we learn to question our own reality, then we are able to create a safe, mutual space with the individual that sits across from us.

I lost my beloved son because this space was not created. His cries were never heard and his spirit was broken. As James Thurber has said, “Let us not look back in anger, nor forward in fear, but around in awareness.” This quote was found in Dan’s belongings and is written on his plaque. I have learned to live by this motto, as my son has taught me. He was and is a wise old soul.

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