And no, there are no elevators or lifts anywhere in the building.
Janet’s white hair frizzes untidily; her face is lined with wrinkles that frame eyes scared and confused. “Where am I?”
“You’re in a hospital,” the other woman tells her soothingly.
“I want to go home!”
“You can’t go home right now,” says the other woman. She can’t go home either; both are currently patients on a locked unit of a psychiatric hospital. For them, for now, this hallway of bedrooms and one dayroom, with locked doors on either end, is the whole world. “You need to stay. You’ve been here for three days.”
Still calm, soothing: “Yes. We’re drawing. Do you want to join us?” She guides Janet to the table in the dayroom, where the staff have provided coloring books and colored markers for the patients on this adult unit.
Janet sits at the table, picks up a marker, and inspects it as if it is a strange artifact. “Is this the pen you use?”
Over the last three days, Janet has earned the resentment of both patients and staff. Patients don’t like her because when the payphone in the hall (that connection to loved ones and support outside these walls) rings, she answers it and then hangs up if it isn’t for her. Staff do the bare minimum of their duty towards her, frustrated by having to tell her every five minutes where she is and why they’ve put her purse in a locked cupboard. They’ve put signs up all over the walls: “JANET’S ROOM –>” but it doesn’t help.
Only that one woman never loses her temper with Janet. Surely she has her own story of why she’s here—terrifying voices and beliefs she isn’t sure she can trust to be real? crippling suicidal depression? memories of unspeakable trauma? No one knows what her story is; she doesn’t share.
But whatever her personal agonies, she never lets them tinge the kindness with which she treats Janet. Every morning, when Janet wakes up terrified in a strange bed, this fellow patient tells her where she is, and how to use her plastic fork to eat her lukewarm breakfast. When Janet cries that she misses her husband, the other woman tells her about his visit the day before.
“Did I kiss him?” Janet asks.
“You sure did!”
And Janet’s face lights up with joy.
“The whole mentality in our family is to keep things a secret,” my friend tells me, sitting down across the table from me and sipping her coffee.
“I have a cousin, S. She and her brother both suffer from a genetic disease which impacts hearing and sight. S was raised with the idea that it was something to hide. That’s what she grew up with.” S’s mother taught her children that they must conceal their disorder, or else no one would ever want to marry them. “If it was revealed, that would be the end of their chances for marriage and children.”
So when S met a man and got engaged, she hid her disease from her fiancé. My friend takes another sip of coffee and continues, “So, they’re engaged, they’re about to get married in a week. Literally, a week before the wedding.” The families had a large gathering together, and somehow the secret came out. The fiancé cancelled the engagement and ended the relationship—not because of S’s disease, but because of her deception.
“It was a genetic disorder. If they had children, it would impact their life. That could be worked with. But he was going into a marriage, and she hadn’t told him something that important. It’s a betrayal of trust. That’s a lot harder to work with.”
My friend shakes her head and drinks the last of her coffee.
“It’s all about secrets and hiding. [A disease] is hard enough as it is; stigma just makes it ten times harder.”
Photo by Dan F
This article was originally published in AccessLetter by the Cambridge Commission for Persons with Disabilities
On March 4, 2015, Massachusetts governor Charlie Baker proposed the upcoming fiscal year budget, cutting Department of Mental Health (DMH) funding for Recovery Learning Communities (RLCs) by 50%. Immediately emails started flying all over the state, among people with mental health challenges served by RLCs, and allies. Rallies were planned, press releases and petitions were drafted, and pleas were posted urging everyone to contact their legislators. The response, from RLC members, allies, and legislators, was resounding, but as of this writing, the funding is still not secure.
At RLCs, people participate in groups and trainings that cover everything from coping with hearing voices to yoga to job-hunting skills. They are peer-run, meaning that their staff members also have struggled or are struggling with mental health challenges. Because of this, “RLCs are able to reach many individuals who…might otherwise not seek help at all,” states the RLC press release. RLCs “are unique because there is no referral, intake, or waitlist process,” writes Janel Tan, Program Director of the Cambridge-Somerville RLC. “People with psychiatric conditions can have easy access to mental health services when they need it—all for free!” Over 8,000 people were reached by the RLCs in fiscal year 2014.
If the budget is signed as proposed, “These cuts would be disastrous,” says Paul Styczko, a peer in recovery and the Director of the Metro Boston RLC. “As it stands now, we have demand for services at tons of places where we haven’t been able to meet the need.”
Six RLCs in Massachusetts operate out of over twenty centers. The Cambridge-Somerville RLC, or CSRLC, serves the Cambridge area. “I [had] never fully been able to accomplish much in the way of Mental Health progress,” writes one member, Robert W Steinberg. “Your best bet was to become a Med Zombie on a locked ward or go to a long term facility and that to me was not a solution. It was a prison sentence. I have made more progress in the last year from attending classes and groups at the CSRLC than I have with thirty plus years of seeking help [elsewhere].” Another member says, “I don’t know what I would be doing right now without this resource.”
“In addition,” states the press release, “RLCs have saved taxpayers dollars through peer support phone lines and peer bridge supports by reducing 911 calls, emergency room visits and psychiatric hospital stays.”
On April 1, 150 people turned out for a rally in front of the State House. Supporters came from as far away as Western Massachusetts. Ruthie Poole, Director of Advocacy of the Transformation Center, says, “There was a hopefulness, an energy: Me being here really matters. Straight, gay, transgender, African Americans, White people, Latinos who spoke in Spanish—they talked about how being at the RLC literally saved their lives.”
Other organizations, allies of the RLCs, also took up the cause. The Massachusetts chapter of National Alliance on Mental Illness (NAMI Mass) added to its previously-scheduled April 13 Advocacy Day the plea, “Restore the $1.7 Million to 5046-0000 to fully fund the Recovery Learning Communities.” Laurie Martinelli, Executive Director of NAMI Mass, says, “We can see the benefits of having the RLCs. It was a dumb idea to cut them—I hope they’re figuring that out.”
Also on April 13, the Massachusetts Ways and Means Committee heard constituents’ input on the proposed budget. Eight panelists spoke on behalf of the RLCs. Here too the wider community supported the RLCs’ cause. Colin Killick, community organizer of the Disability Policy Consortium, wore one of the “SAVE THE RLCS” stickers being distributed. “We as an organization are supportive of RLCs and the important work they do,” he says.
On April 15, the Ways and Means Committee announced that House Leadership and Rep. Brian Dempsey, Ways and Means Chair, restored to the RLCs their full funding. As this article goes to press, exultant emails are flying among RLC supporters. “GO OUT AND CELEBRATE! Sorry for shouting but I just can’t help myself!” writes Justin Brown, Director of the Northeast RLC.
However, the process is not over; the Senate still has not made its position clear. Gov. Baker will sign the completed budget into law on July 1, 2015. Until then, Ruthie Poole says, “We have to keep the pressure on. We’ll need every supporter.” Janel Tan adds that every call, letter, or email will help. The people of Massachusetts are making their voices heard on this topic.
Ann Burgess, former worker at Northeast RLC, says, “We are people with lived experiences of diagnoses and trauma, and we are out there to promote hope.”
For links to the websites of RLCs in Massachusetts, go to http://www.mass.gov/eohhs/consumer/behavioral-health/mental-health/recovery-learning-communities.html.
UPDATE: July 2015: Gov. Baker signed a budget that restored full funding to the RLCs.
This is the top of a lift which allows people to get from the level of the parking lot into a restaurant without using the nearby stairs. The door of the lift opens out, so a person can use their wheelchair or other mobility aid to move into the space that is…taken up by a chalkboard and booster seats. Oh. Hmm.
A Deaf woman is standing in a motel lobby, asking the manager some questions about the accommodations. She is planning a multi-day Deaf event soon, and is looking for a place the participants can stay. She speaks vocally and reads the manager’s lips.
Woman: Are there flashing lights on the fire alarms in the bedrooms?
Motel manager: In the bedrooms, no. In the halls, yes; in the bedrooms, no.
Woman: That’s important, because Deaf people need flashing lights on the alarms, so they can know if there’s a fire.
Motel manager: We don’t have flashing lights in the bedrooms. But don’t worry; anything happens, I come, I knock on your door.
Oh. Well okay then!
Also published in The Bridge, Affiliate Newsletter of NAMI Central Middlesex, MA, February 2015
When I enter the movement arts center Jenny founded, she is in the middle of leading a dance. I quietly sit on one of the couches and wait for the music to end. As soon as it does, Jenny comes towards me across the dance floor and pulls me into a hug. “Val!”
She wears a colorful top and loose batiked pants, and is barefoot. Her face is framed with short graying hair, and right now most of it is taken up with a huge smile and sparkling eyes. She greets me like seeing me is the most wonderful thing that’s happened all week—an enthusiasm she brings to many things. There’s a reason people love to follow her in dance.
We haven’t seen each other since the last annual dance retreat, and we have a lot to talk about. When I ask her how she’s been, the first thing she mentions is her new therapist whom she really likes. To me, Jenny is first and foremost a dancer and friend, but she is also a strong advocate for others who, like her, live with depression and post-traumatic stress disorder (PTSD). I congratulate her on the new therapist and wish her well, then say I’d love to tell some of her story on my blog. We set a time for a phone interview later—right now, we have some dancing to do.
“I’ve discovered that no one knows what depression is like for those of us who have it,” Jenny tells me over the phone several weeks later. “People use the word ‘depression’ to mean something very superficial, for when they’re just sad. When I’m depressed, it feels like I’ve never done anything worthwhile. It feels like dragging 500 invisible pounds.”
Jenny was an adult before she learned that the emotional challenges she’d always experienced were depression. She saw an announcement for National Depression Screening Day and filled out a questionnaire. One question she remembers was “Have your sleeping habits changed in the last six months?” “No,” she jokes, “I’ve always had insomnia.”
A subsequent doctor visit revealed “severe depression.” The doctor recommended medication. Jenny’s first medication made her unable to sleep and increased her symptoms rather than relieving them. “It got worse. I was scared. I called more than one suicide hotline.” She told her psychiatrist she wanted to stop taking it; the psychiatrist warned that if she did so her depression would worsen. Finally, unable to live in her current condition, Jenny stopped her medication despite her psychiatrist’s warning. She tells me that friends at the time said, “You stopped taking it? What’s wrong with you?” Now, she says, “I am very careful who I talk to” about her choices in this area.
Jenny visited a nurse practitioner and related the story. The nurse said, “You wanted to be un-depressed so badly, you kept taking it.” “I felt so validated,” Jenny says now. Where her friends saw bad judgment, the nurse saw desperation and determination.
When Jenny found help, it included art, writing, dancing, singing with the local church choir, and friends that understand and validate her. She also found help in a diagnosis of PTSD and a new medication. “And I said, ‘Oh my goodness, life is so much easier when you’re not dragging 8,000 pounds!’”
I ask her how she is these days, and she says, “I’ve been really, really tired. [When] I get triggered back into trauma and depression and anxiety, I have to give up whatever project I’d been doing. I’ve learned I have to be careful how many things I take on. But I keep going.
“I’m a voice for the voiceless, because I can speak up,” she says. “If my story helps someone, I don’t feel like it’s a total waste.”
Jenny’s blog, “Healing from PTSD,” is at http://jennydeupree.com/.
To anonymously take questionnaires like the one Jenny took, see http://helpyourselfhelpothers.org/.