Secrets

“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.”

RLCs’ Funding Threatened—Community Rallies

April 1 Rally photo

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.

Knocking on Deaf people’s doors

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!

Dancing through mental wellness

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/.

Icy Sidewalk

I saw the woman standing by herself, in the middle of the large cement-paved plaza. People rushed by in all directions, swerving around the woman but not giving her a second glance.

It was cold and raw. The cement underfoot was covered with a treacherous layer of ice and snow.

The woman stood still, white hair fluttering in the cold wind as she looked at the ground around her. Something about her caught my attention. I realized she was standing in a tiny patch of dry cement. She had no cane or other mobility aid, such as might help a person navigate an icy surface.

I went over and offered my arm. She took it gratefully, and together we got off the ice and safely over to where the city had salted the sidewalk. She thanked me.

Before we parted, she told me she had been standing there, not knowing what to do, stuck on that dry patch of sidewalk in the cold, for over twenty minutes.

“I keep on going”: Getting through subway entrances and life

Once Claude and I are settled in her home office, I offer her the bottle of spring water I brought. It is Yom Kippur. When we had arranged to talk on this day, she mentioned that ordinarily in her tradition she would neither eat nor drink on this fast day, but that she has to drink water for medical reasons. She makes this concession but still keeps the fast in her own way by not eating. I soon learn this is typical of Claude: She does not resist doing what she must to deal with her illness, but neither does she let it interfere with her life one inch more than necessary.

She takes the water with thanks, pours us each a plastic cupful, and begins her story.

Claude was diagnosed with secondary progressive multiple sclerosis 15 years ago, when she was 35, just three years after she moved to this country from France. “As weird as it can sound, I was relieved because it showed that I was not completely nuts, that I was not just imagining. My mother used to call me Miss Catastrophe. My specialty was losing balance, just because the crack in the floor would be for me and I would zoom!

Claude briefly explains multiple sclerosis for me by comparing nerves in the human body to electric wires: “You take an electric wire. You have a plastic coat around it to avoid short-circuit and prevent people to burn themselves. My body has decided that this coating is a foreign body and must be attacked.” She says that besides being physically debilitating, it is extremely painful. She does not dwell on this subject.

Many people with multiple sclerosis are not visibly different from anyone else. Looking at a stranger, you cannot tell whether they have multiple sclerosis or not. There is no known cure.

Claude herself uses a walker and a wheelchair at home and an electric scooter outside. She is very fond of her scooter. “My scooter is my legs. I go out without any worry or shame.”

Not far from Claude’s home is a subway station. Since she cannot drive, and her scooter cannot go far due to limited battery life, the subway is a primary method of transportation for her. The elevator in this underground station has been broken for over two years, she tells me. Claude does not allow that to deter her! She tells me of driving her scooter down the tunnel entrance intended for buses, the one marked “No pedestrians.” “The bus drivers, they know me,” she says. “I’m bold.” She pulls out her French/English, English/French dictionary and quickly looks something up. “Yeah, that’s what I am. I’m bold. I’m proud. I do things on my own. I am not someone who is going to be stopped by a disease.”

She also takes public buses. When a wheelchair or scooter user is a passenger in a bus or van, it is vital to their safety that their wheelchair or scooter be strapped down properly. The local bus drivers do not always do this, Claude tells me. “What should I do, clutch the bar, ‘Oh, oh, oh! I’m going to die!’? No.” She calls the MBTA authorities. “You report exactly what happened. What he didn’t do, and how endangered you were.”

She refuses to feel sorry for herself, or to let anyone else feel sorry for her. “My life is a little bit different from most people. I have more physical struggles. But let’s be honest: I’m blessed. I have health insurance. My husband has a job; I touch wood. Do you feel sorry? Come on! I’m blessed! You cannot say, ‘Poor Claude.’”

She is not always able to put on such a brave face. “I fall down. I cry. I cry and you won’t stop me, because life is not fair.” However, she adds, “I don’t want to talk about those moments. Carpe diem. You live on a daily basis and you try to have as much fun as you can, because you don’t know what the next day is made of. The next hour. I have always lived like that.”

Carpe diem—Latin for “Seize the day.” So what has Claude chosen to do with her days? “I said to myself, ‘Claude, you’re tired; you’re sick; it’s going from bad to worse—actually, from worse to worse. Why not do something you’ve wanted your whole life?’ I ended up doing my dream, which was writing.” She is currently working on a fictionalized history of her grandmothers’ lives. “I write for my son. I want to leave him something. I would like him to know about his heritage. I want him to have a sense of what it was and where it was. Also, I want him to know that his mom could be funny. I want him to find me in these writings.” She gestures to the tower of papers on her desk.

“Some people just give up and expect others to take care of them. ‘Oh, poor little me! Look what life is doing to me!’ This is beyond my understanding. The other solution is to keep on going. So I keep on going.”