By Colleen Joubert, Sr. Director of Communications & Development
What happened to the promising future of a thoughtful boy?
Imagine living your twenties with a mind that is different from everyone around you. John describes his extraordinary life in matter-of-fact manner. “I was an unmedicated person with schizophrenia for many, many years. I had full blown psychosis in my early twenties, and I did not have a supportive family.”
I think, wow that must have been so hard.
Our twenties is a most difficult decade. It is a time when we are trying to make our way and build a place in the world, seeking comfort and safety, developing interests, gaining skills and tending to friendships—all to build a satisfactory life. It is really monumental if you think back on it.
The young John had a promising future. He played in the high school band, went on to study at CCRI and had a cadre of friends. Think of the child who dreamed of playing in the jazz band and took up the tuba to make that happen; the thirteen-year-old who picks up the guitar and loves playing, so much so that he still plays today. “I had the passion and interest, but not the innate talent,” he tells it. “It’s a whole world to discover. I own a digital piano, but I mostly play the guitar these days.” But still, here is the young man who took up piano and learned he had more of an interest in poetry and writing than in song writing when he went on to college and developed a love for “poetry for poetry’s sake.”
The promise of the boy was sidelined in a matter of a few years, and by his early twenties John was living on the streets. “Most of my twenties was lost to psychosis and problematic drinking.”
Hearing voices in your head and having delusional thoughts not based in reality brings on a whole bundle of problems like self-medicating with alcohol, unemployment and homelessness. “I had a few healthy years in my twenties before psychosis set in.” Surprisingly John reveals, “But mental health wasn’t the priority at the time. Once I was unhoused at 22 or 23, the practical reality of that situation made it its own precedent. It was a matter of survival. Being without a home was the most pressing issue.”
John didn’t find a community of unhoused people as some do. He didn’t trust anyone. He had been stolen from, verbally abused, threatened. He was very much alone. John says he’d rather not talk about this. It feels thoughtless to be delving into the fine details of what it’s like to be homeless. The concept is unimaginable, really.
Once John was put on a waitlist for housing, he waited a year living on the street. An eternity. I wonder how he managed to wind his way to being the healthy person before me. John was finally given a place at Harrington Hall with House of Hope Transitional Housing program for about a year. A case manager at House of Hope recognized that he was an unmedicated person with Schizophrenia experiencing psychosis. At the time, John did not recognize this in himself, even though he was having delusions and fantastical thinking.
What is it like living with Schizophrenia?
John describes it as seeing two sides of a coin that can’t be separated. Even John, who is in it, can’t really explain. “You’re aware that it’s happening and that it should be delusional, but I can’t separate it from my reality.” John says he’s lost many friends over having this illness… not because of his behaviors, but a fear of the illness itself.
John tells me that Schizophrenia is the actualization of delusions and hallucination, both auditory and visual. “I hear voices daily, even medicated. But over time, I’ve been able to recognize them for what they are, and the delusional thinking has been mitigated.”
After moving to Woonsocket, John lost the health insurance he had obtained for reasons he still does not know. With that loss, he was unmedicated and drinking heavily for a few more years. One day he asked for help when he realized his alcoholism was going to cause lasting damage to his health.
John went to detox at Butler and was referred to Community Care Alliance about 7 years ago. He has worked with Dr. Lederer and likes his methodology for prescribing medications—the “less is more approach.” John says they have built a good relationship and have found a balance with the medications that helps avoid sedation and depression, and the right balance of function and healing.
With the right therapist, a lot can be gained.
Between 6 and 9 months ago, John entered therapy for the second time in his life. He highly recommends it to everyone. He marvels at his therapist here at Community Care Alliance and her ability to “lead the conversation to get something out of you that you never would have come up with on your own. She is absolutely professional and competent.”
The tools that are good for the soul
John’s grandfather was a carpenter who valued tools for the job, the functionality of them. “Otherwise, stuff is just stuff.” John likes the concept. We laugh about John’s tools, the guitar, sound board, piano—that are good for the soul.
John embraces pursuits that are good for the soul—music, poetry. He loves musical lyrics and stumbled on a love for poetry at CCRI and found he had a knack for writing and words that surprised him that was separate from music. John describes how poetry is different from song writing and is less constraining. He has taken part in the Writer’s Journey group for quite a while and tells me that he draws from his days at CCRI when he was a student journalist and Editor in Chief for the school paper. “I take a journalistic approach where there is an emotional connection, yet something is detached so that the story can be told.”
“It is always an absurd honor to be a published poet”
The man I interview is a deep thinker—sincere and talented and interested in the arts and being with people and giving voice to those who have similar life stories. He is a regular contributor to Recovery Speaks, a newsletter he helps produce at that Wellness & Recovery Center at Community Care Alliance. In his writings he shares his own truth with topics about friendships, depression and his own recovery journey. About telling the stories of others, John says, “It’s humbling to be the middle man when helping people to tell their story.”
John has been published five times. Here is one of his poems.
A Light in a Window
by John Sullivan
in my mind, i think behind the creek where the deer drink upon the brink of evening a small cabin a solitary window open shutters ablaze from the electric bulb above the sink against the snow forsaking the dark an open window framed in night i see a burning, phosphorescent white i see in the dark a solitary light