Debbie Hokanson is sitting in her house, red hair falling by the side of her face. She’s wrapped in a blanket because she’s sick with a backache and a fever right now. Yet, she talks with fervor and barely stops talking long enough for me to ask a question. She’s entranced by the memories this conversation is bringing up.
Debbie lives in Stony Brook on Long Island, NY. She’s a nurse, an advocate for mental health, a mother and a wife. Over the course of a twenty-year career in mental health, Debbie has completely changed the norms and practices of the field.
Debbie’s lifelong commitment to nursing evolved into a devotion to mental health when her son Jeffrey had a psychotic break in 2000.
Growing up, Debbie was very close with her father’s mother. She would blast music and let Debbie play dress up with her clothes. She would get them food from her own garden.
“She was just so much fun,” Debbie says.
Her grandmother, her Nana, is the first person who inspired her to become a nurse. She came to this country when she was 14 years old through Ellis Island, by herself. She decided she wanted to be a nurse and went to Rhode Island Hospital. She’s one of the women Debbie has admired most in her life.
“She was always a pioneer. In the way she used to think. She was not a woman of her times,” says Debbie.
She would always tell Debbie stories about when she would offer home visits as a nurse. Or another time when she rode on a horse and buggy in a snow storm and never let go of her medicine bag.
She is very happy in her old age, because her son became a doctor and her granddaughter and great granddaughter became nurses.
“I’m sure she’s happy now,” Debbie says.
In her retirement she went to a forward-thinking organization that offered group living, assisted living and a nursing home as a three-phase journey through old age. The organization took care of everything, which was revolutionary for its time.
“My grandmother was one of the women I admired most in my life,” says Debbie.
Debbie also had another example of a good nurse and a caring mother – her friend Audrey’s mother. Debbie would run up the hill and cry to Audrey’s mother, who would console her and offer refuge from her mother’s roughness.
“She was always very comforting,” says Debbie.
Debbie remained a nurse for her entire adulthood. She feels it’s the kind of job that allows you to be a good mother.
Eventually, her son Jeffrey had his first psychotic break in 2000, when he was eighteen and a half. She wanted to make him all better, “because that’s what mothers do,” says Debbie. For years she went to every conference on mental health.
“Not being able to fix it was really tough,” Debbie says.
In 2005 she went to her first NAMI meeting. A few months later they asked if she wanted to join the NAMI Walk meetings. Next thing she knew she was organizing the walk for Central Suffolk – getting sponsors and recruiting walkers. The first year she did it she raised six thousand dollars. The last year she did it she raised $38,000.
“People in their 70s and 80s paved the road for mental health advocacy. They should be so happy,” says Debbie.
In 2006, the NAMI organizers asked her to go on the Board of NAMI Suffolk. Then she became the president of NAMI Suffolk. Then the LI Regional Office of Mental Health wanted her on many committees. Other mental health agencies wanted her on their boards and review committees.
“But I found out that NAMI is heavily funded by pharmaceutical companies,” Debbie says.
The Office of Mental Health Planning Advisory Council took her next, for six years. Then they merged with the Office of Alcohol Substance Abuse Services and became the Behavioral Health Services Advisory Council. She was nominated by Governor Cuomo and appointed by her senator John Flanagan to be on the council for another six years.
“I could have gotten an office with Mental Health. I could have gotten a lot of things. But I refused, because I always wanted to be able to advocate,” Debbie says.
But it was a lot of traveling and time in the city, so she gave it all up and started her own mental health organization: Living Hope for Mental Health.
She felt NAMI used and exploited the volunteers, the family members of people with mental health considerations. Although they had good programs, they always left Debbie with a feeling that the person with mental health considerations was being pitied.
“It would make me angry that they made somebody feel that way. I don’t think they had hope or vision for anything too great [for the patient],” Debbie says.
To her, a lot of NAMI mothers are overly doting and belittling. She didn’t think they had enough hope and vision to see their children doing something great with their lives.
“It’s not about me, it’s about Jeffrey,” says Debbie.
This new organization, Living Hope, would have an entirely groundbreaking approach and philosophy that contradicted NAMI. Debbie had learned what worked and didn’t work after spending so many years as a mother to a man with mental health considerations and as a representative for mental health in New York State.
In Debbie’s philosophy, people should stop calling it mental illness, because people have good and bad days with these conditions – they’re not always ill. That word, to Debbie, is harsh and not conducive to healing. Most organizations use the term “mental health” instead of “mental illness” these days. Debbie wanted to know, Why wasn’t NAMI evolving with them?
“I have a back problem, but somedays I have good days and some days I have bad days,” says Debbie.
Another point of contention was that she believes the goal is to reduce hospitalizations – whereas she found in her older organizations that people would just hospitalize and wouldn’t support an independent life for people with mental health considerations.
“There’s ways you can avoid going to a hospital. With your provider, with your people,” Debbie says.
To Debbie, the hospital is too traumatizing and should be avoided. It should never be about keeping the person “at bay,” Debbie says, so the family didn’t have to worry about it. It should be about what the person wants and needs to live their best life.
“He’s the pilot and we’re the co-pilots,” says Debbie of her son.
She also feels that NAMI families over-medicate their patients. Doctors are progressively learning that they should keep medication to a minimum, and Debbie believes the mental health organizations should grow with them.
“They’re gonna meet the needs differently,” Debbie says.
To Debbie, there should be less discrimination against people with mental health conditions. They should have more agency and respect.
“This can happen to anybody,” Debbie says. “It doesn’t discriminate.”
Now that her other sons have families and good careers, she sees the effects on Jeffrey that his mental health considerations have had. He’s supportive and happy for them, but there’s a pain there that he’ll never have that kind of life.
Still, Debbie feels he could have a partner one day. When people with mental health considerations hit their forties, their lives get less stressful and easier to manage.
“Life is becoming less stressful. Now there’s a real possibility of him having a life partner,” Debbie says.
But he can’t get married, because that will reduce the social services support he gets. To Debbie, this is a travesty that local political will needs to address immediately. People like Jeffrey are part of a group of people who have enough to deal with to begin with, and this just makes it more difficult.
“If I had the energy I used to, I would do something about it,” says Debbie.
These days, Debbie also works with Mental Health America in addition to her work with Living Hope. They got mental health put on the New York State taxes donation section. To Debbie, that means it’s being normalized.
“We got more bills not only written, but passed, through them than NAMI ever did,” says Debbie.
Living Hope has a new venue this year. Debbie’s religious community is allowing them to host support group meetings in the church.
Debbie says it’s funny, because the old pastor of the church used to give Jeffrey a place to stay and food to eat when he chose to be homeless twenty years ago. Eventually, Debbie found the same church through her own search for a new spiritual home.
“I don’t like religion,” Debbie says. “It’s about my relationship with [God]. It’s about the messages he sends me.”
To Debbie, all these tribulations are a way of developing a deeper understanding of life.
“I have so much more now than I ever had.”