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‘I’m Worth It’

At a recent meeting of the OPTIONS social club at BHCare, in a brightly lit room in a small, squat building in a Branford industrial park, Mary Van Etten, her head bent, is hard at work making a pattern of small dots on a poster. The poster is to be used the following morning, when Van Etten and her friends from the club are scheduled to pile into a van, travel up to the state capitol in Hartford, and talk with state representatives to persuade them to provide adequate funding for the services that have helped the members of the club restore and sustain their mental health, allowing them to regain entry to the world.

Van Etten, for example, suffered for years from depression and post-traumatic stress disorder. She tried to soothe herself with food and nicotine. She recalls at one point stuffing her face with chips, sobbing, “not knowing why and not knowing how to stop. It became my shame.” She ate her 4’ 11’ frame up to more than 400 pounds while smoking 2 ½ packs of cigarettes a day. One day, she lost a piece of paper with her daughter’s footprints on it, and she became reluctant to throw anything out, triggering a hoarding episode. She confused things with people. After her parents died, she became anxious and reluctant to go outside, and then became agoraphobic. Fear kept her locked inside her cluttered home. Her neighbors became so worried about not seeing her, that they called the police. She was deeply ashamed, despondent, and suicidal.

But on this day? A college graduate, she teaches creative writing. She is the treasurer for one of the organizations with which she’s involved. She lives with the love of her life, Sonya, who is also her wife. They have furry, four-legged children, including a Maine coon cat who will do tricks for cookies. She describes herself as a hopeless dork who loves to share and make people laugh. Her calendar is packed. Legislative breakfast. Job club. Health in Humor. Prep for Picnic. Coffee talk. Choir practice. Baking contest. Every single day has an activity scheduled, many of them connected with her advocacy work and Mental Health Awareness Month in May.

The difference? In large part, she says, she is recovering thanks to the help she’s receiving from BHCare, a nonprofit that specializes in community based rehabilitation care. BHCare is designated by the state as the local mental health authority for Branford, East Haven, Guilford, Madison, North Branford, North Haven, and other towns. River Valley Services out of Middletown plays the same role for Chester, Clinton, Deep River, Durham, East Haddam, Essex, Haddam, Killingworth, Lyme, Old Lyme, Old Saybrook, and Westbrook, among other towns.

“BHCare saved my life and has helped me live a life worth living,” Van Etten says.

With the help of BHCare, she became stabilized on medicine, worked on her hoarding problems, figured out what treatment and programs would be covered by health insurance (allowing her to access that help), figured out how to provide food and housing for herself, and much more.

Van Etten and her friends at OPTIONS are working on their posters in a room festooned with more posters, whiteboards, and wall hangings that provide them with reminders that the way you treat yourself sets the standard for how others will treat you, that authenticity is the key to being OK, and, most important that “I’m Worth It,” which is the tagline for their current advocacy campaign.

Van Etten is hard at work, and so I tell her I’m going to go over to another table to talk with a woman sitting quietly. We both look over at the petite woman, wrapped in a brown jacket, her head tipped down as though she is listening carefully or deep in thought. Van Etten looks up at me.

“Debbie. Don’t touch her, let her know you’re there first,” she says, then looks down again as she continues work on her poster.

I walk over and introduce myself to Debbie Roberts, and tell her why I’m there, to write a story. Her head pops up, and a smile spreads across her face. She extends her hand. I realize she is blind. She gently holds my hand for about a minute.

We chat, and, a few minutes later, Van Etten walks up and tells Roberts she has created a poster in Braille, so that Roberts can communicate the message—I’m Worth It—in a medium appropriate to her circumstances. Roberts smiles, thanks her, and Van Etten returns to her table, with plans for another poster. This one will be in sign language. It is for her.

“Debbie is blind and I am deaf. Life is life. Why not communicate the way we do?” she says, sitting down and taking up her marker.

Deep Cuts, More on the Way

As Van Etten and the others work on their posters, Emily Granelli, the chief business development officer for BHCare, checks her cell phone to see if one legislator has gotten back to her about meeting the next day. Many of the area legislators are happy to meet, but this one seems reluctant. The trip up to the capitol is one of many Granelli has planned to help get the word out to legislators, so that they see a face when they evaluate the line item associated with Department of Mental Health & Addiction Services (DMHAS) budget, which helps fund BHCare and River Valley Services, among other organizations. These organizations also are funded by insurance, Medicare, and Medicaid, among other sources, making the national budget debate part of an ongoing nightmare for both BHCare employees and clients. As they work on their posters, the members of the social club pepper Granelli with questions about what is funded by the state, and what is funded by Medicaid.

With the deepening state budget crisis, BHCare is among many organizations that have sustained budget cuts in the last five years. Granelli estimates BHCare is able to serve 200 fewer clients than it used to, when it comes to clinical services. To her and the others at BHCare, that is 200 fewer people who will have a lifeline back to mental health.

“We eliminated five full-time positions just last week,” Granelli says, when the two of us are talking later. “That’s the result of cuts and funding shifts from last year.”

The cuts included the people at BHCare who helped their clients find jobs, and the people at BHCare who helped clients learn how to interact socially and build natural support networks so that they can become independent.

“These illnesses often hit in young adulthood when people would otherwise be forming these support networks and relationships,” she says. “Rather than forming supportive relationships, our people often were struggling with their illnesses, so it’s something they skipped.”

Instead of offering one-to-one support, as in the past, BHCare now sometimes relies upon peer-run groups, sometimes running those groups without staff supervision, so that they can still provide some level of support.

“We’re being as creative as possible,” Granelli says, when it comes to the social rehabilitation work. “As for the employment positions, it’s a little more difficult to replace that. It’s pretty specialized. What happens is we just try to keep doing that, but our folks have higher caseloads, which means less attention.”

Among her other responsibilities, Granelli also works with Roberta J. Cook, BHCare president and CEO, on the information Cook provides while testifying during Appropriations Committee Budget hearings, trying to convince members to restore some of what was cut in the governor’s budget. This past February, Cook told legislators that BHCare provides mental health treatment to 3,000 people in Connecticut suffering from a wide range of chronic disorders including schizophrenia, bipolar disorder, and major depression.

“These illnesses are pervasive and if left untreated can lead to an increase in devastating symptoms, psychiatric crises, and result in public health and safety hazards,” Cook told legislators. “Community-based services allow these individuals to live safely and independently in the community.

“BHcare services save lives, they prevent suicide, they give adults with serious mental illnesses the treatment, medication and supports they need to live safely and independently in the community. Without accessible mental health and addiction services the state will see a sharp increase in the number of people accessing acute care and/or ending up in correctional facilities, both of which are much more costly in both financial and human terms,” she said.

Picking Up the Baton

Van Etten tells me later in April that she wasn’t able to make it to the state capitol that day.

“I did not get to go,” she says. “Hellllllooo anxiety! Traveling far like that is still hard for me.”

But her friends were there to pick up the baton. Debbie Roberts and Debbie’s husband Keith went, carrying both posters made by Van Etten. The Robertses are now old hands at fighting for the funding that helped restore them to health. Last year, they received certificates of appreciation for their work from the Keep the Promise Coalition, which works on behalf of people living with mental illness and their family members to ensure comprehensive community care for those people, from childhood to old age.

Later in April, the Robertses invite me to their home to talk. They live together in a cramped, cozy one-bedroom Parkside Village apartment maintained by the Branford Housing Authority. They have made their home here with a ballpark out back near the patio area where they like to sit and listen to the Little League games, sometimes cheering on the base runners. There is a small garden out front that will soon be alive with flowers and vegetables to be harvested later this summer. The apartment’s tiny common area, which serves as a living room, dining area, and kitchen, is decorated with pictures of Debbie and Keith, who met as children at summer camp. The pictures sit side-by-side with an enormous amount of firefighter memorabilia.

Keith used to be a member of the fire department in her hometown of Woodbridge, where she grew up as a young boy. She now identifies and dresses as female, and the sentiments expressed in the Firefighter’s Prayer posted on the wall might be applied to her advocacy efforts on behalf not only of herself and her wife, but also anyone else who needs help maintaining their mental health. “When I am called to duty, God...Enable me to be alert and hear the weakest shout...I want to fill my calling and give the best of me...To guard my every neighbor...”

In the background, police calls and fire calls and related chatter crackles from a scanner, which Debbie and Keith monitor to keep tabs on their hometown. The Robertses have made a comfortable home at Parkside Village, where their neighbors sometimes pitch in with their garden, or leave them anonymous gifts of banana bread on their doorstep.

This year, the couple will be making several trips up to the capitol. They are scheduled to appear on the Better Connecticut television program in May. And they are working with Granelli to appear with State Senator Ted Kennedy for an address geared towards Mental Health Awareness month. They are comfortable speaking up for what they need—skills honed over a lifetime of adversity, painful losses, and setbacks for both—leavened by support from BHCare, and their constant enduring love affair, which has spanned more than three decades.

A Summer Romance

We were going to sit outside and chat, but, with a gentle spring rain falling outside, Keith sits on the couch, and Debbie sits at the office desk in the living room area. They tell me they met at Camp Harkness, at one of the few state parks in the country dedicated to people with disabilities and their families. Owned by the state and operated by the state Department of Developmental Services, the 102-acre property fronting on Long Island Sound was a donation from Mary Harkness “for perpetual use by those stricken with polio, ‘handicaps,’ and veterans.” Keith started going when she was six, and Debbie when she was seven years old.

Debbie and Keith remember the camp as a place where they were accepted, not tormented, and where they didn’t stand out, unlike the rest of their lives. First they were just fellow campers. Then friends. And, then, something more than friends.

When did they first realize that?

“Oh, I’ll tell you the story, but I’ll probably catch it after,” Debbie says, with a smile towards Keith.

“That’s OK! No, go on, go on,” Keith says, laughing.

They were on a field trip to an amusement park.

“And the park wouldn’t let me ride the roller coaster,” says Debbie, her voice, even all these years later, rising with indignation.

Keith takes a quick in-breath. They both remember the confrontation as if it happened yesterday.

“I told them it wasn’t fair,” says Debbie, her voice rising further, and sitting straight up.

She’s always been quick to stick up for herself.

“And then Keith came up with this idea,” she says.

Keith picks up the story.

“Debbie and I...well, I kind of had a crush on her,” she says, looking at her wife.

“And me too...that’s the thing,” says Debbie, laughing.

“I didn’t think it was fair either and I said, ‘What if she sits on my lap?’” Keith says.

The attendant said nope, that’s against the rules. They both persisted, insisting that older, stronger, and taller Keith would keep petite Debbie safely seated. They both, particularly when they work together, are enormously persuasive. The attendant finally said yes. Keith climbed in first, and Debbie sat on his lap.

Debbie immediately began teasing Keith.

“Don’t do anything I wouldn’t do,” she told Keith.

As the roller coaster car pulled out and began its ascent, Keith gave Debbie a brief, chaste, heartfelt kiss on her cheek. Their first kiss. Both relieved and thrilled that their crush was mutual, they embarked on the roller coaster ride that was, in some ways, like the ride that would become their life.

Long Talks, Lots of Letters

That kiss was captured in a photograph by a fellow camper. Jealous, he tattled, and shared the picture with both sets of parents. Both sets of parents objected. Why? Well, there was the age difference. Debbie was 13 at the time. Keith was 17.

“My mother had a fit,” Debbie says.

For a time, the forces against them managed to keep them apart. So, they started with the phone calls, many of which lasted through the night into the early hours of the morning, and the letters. Keith kept the letters in a file folder she labeled the “I’m in Love with Debbie” folder, which she kept for many years until they were all lost in a basement flood.

Keith says her mother, a Baptist, was adamantly against Debbie, who was raised in the Jewish faith.

“Oh, that created a lot of drama,” Keith says, shaking her head at the memory of some of the conversations. “My mother said, ‘No, no, no, no, no, no, no, you can’t.’”

“I had to try and hide the letters Keith sent,” Debbie says.

“You didn’t tell me that!” Keith exclaims.

Debbie, who is 100 percent blind, explains that her mother was overprotective to the point of discouraging her from engaging in the world. Debbie suffered from a neuroblastoma when she was nine months old. After radiation treatments, her retinas became detached. Her only memory is of being totally blind.

“I didn’t have a problem with it,” she says of her blindness. “I don’t remember what it was like to have sight. This is normal for me.”

What she doesn’t like is when people treat her like she isn’t normal, or like she should withdraw from the world because she is blind. This becomes clear.

“My mother would tell me I can’t do this, I can’t do that because I’m blind,” she says. “She would tell me, ‘You will have to live with me the rest of your life.’”

Debbie pauses. Takes a breath. Then, “I told her, ‘Over my rotting corpse.’”

Debbie knew she would have to move away, far away, to escape.

‘I Can’t Help You With That’

Keith has partial vision, but it is dramatically reduced due to her albinism, which also makes her skin and hair very fair. Her early years in elementary school went well, but then she started having trouble keeping up, due to problems with her sight.

“I remember telling the teacher, ‘I can’t read the board,’” she says. “And the teacher told me, ‘Well, then you are flunking history, because I can’t help you with that.’”

Those battles became more pronounced in junior high and high school as she began expressing her gender.

“I wanted to be who I was,” she says. “But when I would ask to sit with people, they would say ‘Who wants to sit with a he, she, it, or that?’” And then they would laugh.

“That’s mean,” says Debbie, leaning forward as Keith recounts her story.

Keith says she finally found two friends, two girls, who would sit with her and, on occasion, sneak out to the mall for shopping trips. Things got better for a time, and then, one day in high school woodworking shop, a fellow student thought it would be funny to hit Keith in the back of the head with a piece of pine.

The student walked away, laughing to his friends, “I got he, she, it!”

Keith stood up and punched him in the face, and then stuck her foot out and tripped him.

Her attacker got sent to the nurse’s office. Keith got suspended.

Keith would call Debbie to tell her about her troubles, and Debbie would talk with Keith about her own struggles. Debbie was often excluded by fellow students in high school. Then, there was a teacher who denied her worksheets in Braille, telling her, “Just do the best you can.”

Debbie responded by having a classmate read her the questions, and then Debbie wrote the answers in Braille.

The teacher said, “I can’t read Braille,” and Debbie said, “Just do the best you can.”

All the while, Debbie and Keith kept up their phone calls. Sometimes from eight at night to six in the morning.

“I could tell Keith things I couldn’t tell anyone else,” Debbie says.

“It was a super special relationship,” Keith agrees. “We encouraged each other. We were there for each other. We made a promise that if someone doesn’t like something, we would never go to bed mad. We would talk and solve the issue and know we can fix it. Does that lead to late-night discussions? Yes it does.”

“And then my mother saw the phone bill and freaked,” Debbie says.

Wanting to Die

Keith’s life was difficult in large part due to not being accepted by most of the people she went to school with and because she also felt her mother was also overly protective and wanted her to withdraw from the world.

“She would say, ‘You’ll never amount to anything because of your vision, and you will have to stay here with me.’”

Still, her life was bearable in part due to being accepted, supported by, and working with the others at the fire department, which she joined as an EMT when she was 18, and due to the support of her father.

“He really supported me,” she says. “He would say, ‘My son, my daughter. It doesn’t matter what. I love you for the person you are.’”

And then her father passed away, suddenly. And then, one day when she rode her bike to the drugstore to get something for her mother, a car jumped the curb, plowed into her, throwing her over the roof of the car, and onto the street. Keith remembers her fellow firefighters responding and trying to reassure her and then two painful weeks in the hospital.

She says the accident, while not her fault, was used by family members trying to convince her she wasn’t safe out in the world. She becomes visibly upset recounting the accident.

“It’s OK,” Debbie says quietly.

As she slowly recovered, in her early 20s, she embarked on foolish self-destructive actions that she now knows were wrong, including drinking too much and other risky behaviors. She admits she wanted to die.

“It was 58 ways of how could I do myself in,” she says.

She would call Debbie and wonder aloud whether her bad luck with the car accident, her father’s death, and her risk-taking were all a sign that “I was not meant to be here on earth.”

Debbie, who says she also struggled with alcohol abuse at times in her life when she was suffering, told Keith she did not want to go visit her at the cemetery. Debbie encouraged Keith to seek psychiatric support. And Debbie, living in Albany, where she moved when she was 22, invited Keith to come visit.

Keith “took the Greyhound bus up, met a few interesting people on the way there, and wasn’t sure how long Debbie was going to let me visit.”

Debbie told Keith she had to promise not to engage in self-destructive behavior and that, as long as she kept that promise, she could stay with her as long as she wanted.

“She took me out of harm’s way,” Keith says of Debbie.

Debbie says that Keith is one of the first people she ever could trust.

“He’s my rock,” she says.

“It’s a fairy tale romance,” Keith adds. “This person loves me for me.”

That was almost 30 years ago.

A Home Away from Home

They ultimately made their way back to Connecticut, discouraged by the bitter cold Albany winters, and encouraged by the promise of a home together at Parkside. Keith proposed on a bench at the beach at the camp where they met, asking if Debbie would accept her with all her faults. Debbie said yes, and they were married.

At BHCare, they found support, guidance, and their tribe.

“It is our home away from home,” Keith says.

“They are family,” Debbie says.

“You get all of the support without judgment, everybody accepts you for who you are,” says Keith.

The people in the group from BHCare hang out together. They call each other. They text each other. If they have a bad day, they know someone will come to help. They know each other well enough to know when to step back—”sometimes you need to let people help themselves,” Keith says—and when to step forward and help.

The rain lets up a bit, allowing us to step outside. Debbie and Keith want to show off their garden and patio. Keith steps out first. She then turns and holds her hand out to Debbie, helping her outside. They are at once oddly matched—Keith’s tall and muscular frame complemented by her stylish white shrug, black patterned dress, and pumps; Debbie’s petite figure clad in a too-large bright pink rain jacket, black pants, and sensible sandals—and perfect together. Debbie’s hand slips easily into the crook of Keith’s arm, and Keith places her hand over Debbie’s hand, protectively.

They joke about how people are sometimes reluctant to approach big, tall Keith, and will instead approach little Debbie, with her engaging, sweet smile that belies her fierce will and straightforward determination. Once while they were grocery shopping, a man asked Keith whether Debbie was her daughter. Keith thought that was just weird.

“You need to rethink that,” Keith retorted.

They laugh about how the guy’s wife then took him down a notch, and fast. And they laugh about the time a woman came up to Debbie, sputtering with embarrassment, saying she wanted to ask Keith something.

“Ask her!” Debbie insisted.

The woman wanted to know where Keith got her dress.

Sarah’s Cupboard Thrift Shop, Meadow Street in Branford, for the record.

Eight bucks.

They walk together, Keith ducking under the American flag flown just outside their door, and talk about what they will plant in their garden. Together, they turn the corner. With Keith matching her steps to Debbie’s, they walk carefully to the patio. Keith points to the fields where they watch and listen and cheer on the ball games on a summer’s eve.

We walk back inside, talking about their advocacy work.

They get that there is a huge state budget deficit.

In an annual state budget of about $20 billion, there was at the end of April a projected deficit of about $1.7 billion. Additional sources of revenue are needed, but hard to come by, which means much of the shortfall will result in cuts to programs, most of which have vocal constituencies buttonholing legislators, who are now tasked with taking Governor Dannel Malloy’s proposed budget, and coming up with one of their own, by the end of June.

Emily Granelli had explained earlier that BHCare’s overall budget is about $22 million annually, including its subsidiaries. DMHAS funds make up more than $12 million of that. The governor’s budget proposal for 2018-’19 included $4.5 million in cuts for DMHAS grants for outpatient and employment services, which would potentially affect all DMHAS-funded agencies.

They all just want to make sure that people who have already suffered a lot of pain won’t be asked to share disproportionately in the suffering that is to come.

BHCare makes it so that people can get out in the world and be less of a burden to the state, Debbie and Keith say. And besides, they say, echoing the mantra that has become the key phrase of this year’s campaign, they know they are worth it.

“Otherwise, these people might withdraw, just stay home, and not go outside,” Keith says. “And how much cable can you watch?”

Debbie and Keith know this firsthand. In addition to whatever other disabilities they might be suffering from, their friends, their found BHCare family members, have suffered from addiction, depression, anxiety, hoarding, withdrawal from society, and numerous other mental health ills.

They are thinking of Mary and Sonya. And their friend Susan, another BHCare client, who suffered from 25 years of domestic violence. It ended when she was shot several times by her abuser, who then shot himself.

Susan survived, but with PTSD, depression, hoarding, and bad hygiene. She began isolating herself. When she first came to BHCare, she would just sit in the corner. She wouldn’t talk, wouldn’t interact. Now she’s the president of the OPTIONS social club, and helping her community every day, living in her own apartment, and loving life.

Their friend Billy struggled with drugs and alcohol in his teens in an effort to drown out voices he was hearing. He ended up at Connecticut Valley Hospital and watched in horror as the orderly turned the key in the door. He heard the lock clunk close and thought, that was it, that he would never be out in the world again. With a proper diagnosis, the help of a new medication, and the people at BHCare, he is back out in the world, and volunteering, cooking, and cleaning at OPTIONS. He hopes to start a recovery group.

And there are so many more. BHCare helped these people make their way back into the world, where they are working, or trying to find jobs, and or otherwise trying to find ways to contribute.

“One thing our lives have taught us is that you have to be your own advocate, you can’t wait for others to do it for you,” Debbie says. “You have to be your own voice. You have to step up. That is what BHCare has taught us to do, and how to do it. A lot of people will whine and complain.”

“But at some point, you have to stop that, and get your butts in the van and get up to Hartford,” Keith says. “By teaching Debbie and me to be advocates, we can teach others to use their outside voice too.”

“To say what you want to say, and be who you want to be,” says Keith. “It’s a powerful thing.”

“Powerful,” says Debbie, walking beside her.

Kelley Fryer contributed to this story.