By Moryt Milo
A pal, a peer, a mentor—everyone needs someone to lean on. For those diagnosed with a mental illness, having anyone in their corner when leaving a hospital, outpatient program, or jail can be the first step toward healing—especially when that individual has been down the same path.
No one understands that better than Ray, a Peer Mentor with NAMI-Santa Clara County, whose own path toward recovery was brutal.
Ray hadn’t spoken to his mother in ten years. Then she became terminally ill and Ray came home. “We became best friends, and I took care of her,” he said.
When she died in 2004, Ray had a psychotic break. He thought Jesus was talking to him through his mother’s dead body. “So I decided to put cookies in her mouth,” he said.
Delusional, terrified, and alone, Ray’s world completely collapsed when the police knocked on his door a week later. When they saw his mother’s decaying body, they arrented Ray, charging him with murder and defiling a corpse. He was booked into the Santa Clara County Jail and put on the eighth floor where those with mental health conditions are held. Eventually, Ray was placed in a padded cell with a suicide smock.
After three weeks, he was sent to El Camino Hospital in Mountain View where he remained for ten weeks. Ray then spent time in Fremont Hospital in Fremont. During this period, Ray lost his job and his mother’s home because of missed house payments.
He was ordered into Santa Clara County Judge Stephen Manley’s Behavioral Health Court. It took Ray three years to complete the court’s program requirements, after several tumbles with the law that put him back in jail. In 2008, Judge Manley gave Ray the opportunity to move into Julian Street Inn, a homeless shelter that addresses mental illness and substance abuse.
“I was homeless and angry, so I agreed,” Ray said. By then, his charges had been reduced to possession of a controlled substance.
After struggling for years with mental illness and drugs, Ray found the support he needed to get his life back on track. At Julian Street Inn, he learned about NAMI and its Peer-to-Peer program, and as Ray recovered, he became more involved with NAMI and started giving NAMI presentations at hospitals.
“When I was at the hospital, I shared how lonely I felt. That no one in the world was thinking or feeling like me. I wanted that person to know you were not alone,” he said. “I will stand by you and give you a hug if you need it.”
Ray, 57, became part of the first cohort to go through training to become a Peer Pal, now known as Peer Mentors. The experience has been as rewarding for Ray as the individuals he mentors.
“When I first meet someone, I only have a first name and phone number. I like that. I don’t want to know any more about them until I meet them. This way there are no preconceived notions. No bias. We all start from the same place. I want to get to know the person, and I am sure they feel the same,” he said.
NAMI Peer Programs
NAMI Community Peer Program Coordinator Kristin Colino said NAMI has various programs designed for individuals diagnosed with a mental illness including Peer-to-Peer and Community Peers (Peer Connectors and Peer Mentors). These peer-support programs help individuals understand the challenges of a mental health diagnosis and the tools needed to navigate toward wellness.
All programs are free and vary in degree depending on where individuals are on their path to wellness. Peer-to-Peer is a 9-week course that meets two hours a week (currently online due to COVID-19 restrictions) and is taught by a person farther along on their path to wellness. The course provides strategies, resources, and information to give participants the confidence and tools needed to live with a mental health diagnosis.
The Community Peer Program matches individuals with Peer Connectors or Peer Mentors. Peer Connectors and Mentors are not therapists or counselors. They are individuals who can share the journey and have walked a similar path toward wellness. In this four-month program, the Peer Connector talks with the participant regularly by phone and meets weekly in a local community setting. The Peer Connector provides resources and emotional support. The focus is goal oriented.
Peer Mentors also work with individuals over a four-month period. The parameters are the same as Peer Connectors except individuals must come through a hospital referral or other outside source. El Camino and Stanford hospitals and Life Moves Homeless Program participate.
Kristin also pointed out, “Peer Mentors are more seasoned.” They have more experience, give hospital presentations, and connect directly with patients in hospital settings. Administrators at El Camino and Stanford hospitals recognize Peer Mentors as valuable resources for their patients.
At Stanford Hospital, Ashley Hartoch, LCSW, ACM, Complex Care Manager, oversees the Peer Mentor Program. The Peers usually see three to eight patients a day depending on the medical team’s assessment. In all circumstances, the patient has to agree to work with the peer. Recently, the peer program shifted to focus on patients with addiction.
“Peers have been on the journey that patients are now struggling with,” Hartoch said. “They can form rare bonds and break down barriers and help patients open up. They usually get information we can’t from the patient, information that can provide valuable insight and can help the medical team assess the patient’s needs.”
At El Camino Hospital, Brianne Baker, LMFT, the hospital’s Addiction Service Manager, said the hospital has embraced working with NAMI Peers. The hospital has an Adult Mood Dual Diagnosis program that works with Peer Mentors.
NAMI received a one-year, $100,000 grant from the El Camino Healthcare District to service El Camino Hospital clients in the behavioral health department, as well as self-referrals in their district. Last year, NAMI placed 60 individuals from El Camino Hospital with NAMI Peer Mentors, surpassing its goal of 50. This year the goal is to place 70.
“The direct integration of a peer (NAMI Mentor) during a person’s recovery has been instrumental in providing hope to individuals we provide treatment to,” Baker said.
Sara S., the assistant to the NAMI Community Peer Program and a Peer Mentor since 2013, meets once a week with patients at El Camino Hospital in the Continuing Care Program (CCP) to tell them about Peer-to-Peer and Peer Mentor opportunities. Sara gives presentations to El Camino staff every four to six weeks about NAMI resources, her own journey, and targeted topics. She also collaborates with staff on potential peer matches.
Finding a Mentor
Kenia discovered the NAMI Peer Mentor Program through her Life Moves Homeless Program therapist who said, “I think you need a friend and NAMI has a program that can provide that.”
Kenia had never heard of NAMI, but her determination to change her life and be there for her four children was the driving force. It meant she had to conquer her meth addiction and recognize she was self-medicating to deal with her anxiety and depression. Kenia went into rehab for six months, after which she was placed in Life Moves and from there transitioned into an apartment with her parents.
Kenia matched with a Peer Mentor who understood her issues with procrastination, depression, and anxiety. “My mentor set up goals and assignments and would be there to help me,” Kenia said. Kenia’s mentor helped her find a psychiatrist, therapist, primary care physician, and medication. “She did wonders for me,” Kenia said.
Now when her depression kicks in, Kenia has the tools to get ahead of it. “I know how to manage it and not let it sneak up on me. I use meditation and affirmations. It took a while but being with my mentor helped,” Kenia said.
Stand by Me
Like Kenia, Trisha (named changed to protect her privacy) had never heard about NAMI until two NAMI peers gave an In Your Own Voice presentation at a Kaiser Permanente outpatient program. Trisha had transitioned there after being hospitalized for a suicide attempt. She had been severely depressed and was not on the right medication.
“The presentation validated everything I was thinking, and I thought, Oh, that’s what mental illness is,” Trisha said. She felt a sense of clarity. When the speakers provided information about the Peer-to-Peer program, Trisha decided to sign up. The idea of learning from individuals with lived experience sounded right.
After Trisha, 27, graduated from the program, she decided to create a peer-led group in her church. But throughout this time, Trisha’s mental health suffered. “I was just floating along. I wasn’t getting better and wondered if this was how it would always be for me,” said Trisha, who has bipolar disorder.
She decided to call the NAMI warmline for guidance. The warmline volunteer recommended the Community Peer Program. Trisha was matched with a Peer Connector who had a similar path. It was exactly what Trisha needed.
“I was so well matched. We were similar in age. She had been hospitalized and like me had bipolar disorder. The other big thing for me was finding the right medication,” Trisha said.
Her Peer Connector helped Trisha with self-advocacy. She gave Trisha the courage to draft a letter to the psychiatrist and encouraged her to be specific about what was happening. “I explained I was disappointed in my care and with appointments every three months,” Trisha said. “I was not taking my medication regularly and was it normal to feel depressed for so long?” she said. “I was scared to send it, but I did, and it went well.” Her medication was changed and Trisha’s depression lifted.
Her Peer Connector experience taught her the importance of self-advocacy and how to take charge of her mental health. “I really benefitted from someone helping me, rooting me on,” Trisha said.
Peer Mentors Benefit
Peer Mentor Sara S., 35, has been with NAMI for ten years. She had her first psychotic break at age 16½ and was hospitalized at 18½. When Sara’s daughter turned two, determination to get her illness under control became a priority. In doing so, Sara found her calling, and NAMI was the door through. She became an In Your Own Voice presenter and took the Peer-to-Peer class.
“I decided to become a Peer Mentor and it helped me too,” Sara said. “I wanted to advocate for others with mental illness. This helped me to stay well and I enjoyed the work.”
Sara, whose smile lights up a room, is open about hearing voices and her diagnosis of schizophrenia. “When I see patients at the hospital, I share my experiences with them. I talk about how I self-manage my care. I want to spread hope,” she said.
It took Sara years to understand her diagnosis and how to manage it. How getting support from a peer was different than from a clinician. “The peer had lived experience and understood how you were feeling and what you were experiencing,” Sara said.
When hospital patients ask her questions about Peer-to-Peer, she tells them, “I wish I had had someone who understood and could help me learn how to cope and manage my illness.” She makes sure they know “you can overcome this illness and be aware of what’s going on within you.”
You Can Heal
Henry, 58, grew up surrounded by mental illness. His parents fled Poland during World War II and brought trauma with them. His parents and siblings suffered from depression. He had Obsessive Compulsive Disorder (OCD) and generalized anxiety and depression. He lived in a family where everyone was expected to suck it up. Mental illness was never discussed and never accepted.
He was officially diagnosed at age 24, and lost his job when he became too ill to work. His family faulted him for being terminated. His mental health deteriorated, and with no support Henry hit rock bottom. By 2012, he stopped eating and sleeping and was hospitalized five times. After the fifth hospitalization, he transitioned to Momentum for Health’s day program. There, he learned about OCD and thought, Wow, other people have this too. “I learned about myself and this helped me to process my illness, which led to acceptance,” he said.
Momentum suggested Peer Pals (now Peer Mentors). He trained to teach the Peer-to-Peer classes, and then became part of the inaugural Peer Mentor class in 2013. Henry has worked with individuals ranging in age from 19 to 70. He had one individual who at 55 was diagnosed with schizophrenia. “We could totally relate to each other because of our family culture and heritage,” Henry said.
When Henry meets a new mentee, he wants them to know how similar they are. “I want them to know they are not alone,” he said. “That you are not a misfit.”
Sara and Ray would agree wholeheartedly with Henry when he said, “What motivates me so much is knowing I didn’t have this program. The work pays me back in infinite ways,” he said.
And as one mentee said, “The peer mentor experience was a ‘gift,’ and he would tell others, ‘You have nothing to lose, give it a try.’”
To learn more about Peer-to-Peer Education Course, click here: Peer-to-Peer
To learn more about the Community Peer Program, click here: Community Peer Program
For additional information about the peer programs, contact the warmline at 408-453-0400 Option 1, Mon-Fri 10 A.M.-6 P.M.
Author: Moryt Milo serves on the board of NAMI ( National Alliance for Mental IIlness) Santa Clara County. She writes and blogs regularly for the non-profit on a range of mental health topics. Additionally, she moderates NAMI-Santa Clara County events. Click the links below for a sample of her Medium posts. View her blog or writings for more of her work.