The Voice of a Veteran

Originally published in Voices for Change, newsletter of the Transformation Center, Winter 2016

“There’s a little Marine [in] here,” says Tim, slapping his torso, “telling you, ‘You’re still there.’ The only ones who know are the people who have been there.”

Tim is an American veteran of the Vietnam War. Since the War, he has lived with what he now self-identifies as Post-Traumatic Stress Disorder. He says that when he returned from overseas in 1968, “I was a mean, mean guy. I did a lot of screaming and yelling, a lot of mood swings—and I didn’t know what a mood swing was! I was like a shadow person. As a shadow person, I can be somewhere else than where I am right now.

“It’s changed now. Now I can get it out. Now I got a voice.” Today, at the age of 65, Tim is a peer supporter, active volunteer, and self-described “pain in the neck.” He looks back over his life and speaks about what PTSD is like from the inside, and how treatment for it has changed over his lifetime.

When he returned from duty, no one offered him any support. “There was no place for me to really go” for help, he says. Indeed, he isn’t sure he could have accepted support if it was offered. “What would I say? Where would I start?” Also, he feared for his job. “I didn’t want anybody to know. ‘This guy’s got a mental illness; he might flip out or something.’ I never told them I was in the service, you know? They might not hire you.”

Tim worked in construction for over 40 years. He spent 10 years on the team of Boston’s Big Dig. He worked on the Congress Street Bridge. He proudly shows me his Laborers’ Union card, which he still carries in his wallet. “Kept me in reality; kept me in there; you know?” I ask him if he means that the work was an important wellness tool for him, and he says yes. “But they didn’t know that. You tell somebody, you might get laid off.”

He does remember one exception: “There was only one company that really helped me out. Walsh Northeast asked if I was a veteran. Only ones who ever asked me. I said, ‘Yeah.’ Left it like that. Didn’t want to tell them anything else. Didn’t want to do a whole lot of explaining.” Even with a sympathetic employer, Tim was cautious of revealing what he was going through.

So he lived with his rage and trauma, without any words for what was happening to him, without any organized treatment, until 2004. This, he tells me, was the turning point for him. “I didn’t have a clue. Until a helicopter, a bird, flew over. I dived right into a trash can.” Among the trash in the can, hiding from the helicopter that reminded him so vividly of the helicopters in Vietnam, he realized he needed help. “My primary at the VA in Jamaica Plain, I’m yelling at him” about that helicopter. “He said, ‘You have to do something. You’re going to fall apart. Go up to the twelfth floor and see the PTSD doctor.’ I really didn’t know anything about PTSD. They told me I should get treated. I said, ‘Get treated for what?’

“Then I started going to RLCs [Recovery Learning Communities], therapists, things like that. RLCs really helped me.” But, Tim emphasizes, it’s the other veterans who help the most. I ask him what he looks for in a mental health worker, such as a doctor, therapist, or peer supporter. He says what he wants most is someone who has also been in combat, not merely been told what it’s like secondhand. “‘Oh, I’ve heard that before.’ Yeah, but you haven’t experienced it!”

Today Tim volunteers extensively, on the Board of the Transformation Center, at the Hope Center (http://www.hoperlc.org), and at the VA. “The volunteer part, that keeps me in the Now. I work with World War II veterans, POW, and everything else. They didn’t say nothing, but they talk to me, you know?”

Once, a psychiatrist referred to him as a “patient.” “Oh, now I’m a patient? Well, I wanted to leave right then.” He imitates the doctor: “‘How’s your medicine?’ How’s your day going; that’s what I want to hear.” When Tim supports a peer, he says, “I like to respect you as a person. I’ll meet you in the park. We’ll sit on a bench; we’ll talk. I always bring up, ‘How you doing?’ you know? I try to keep good spirits with you. I have to have a therapy degree to have a conversation? Win your trust, that’s a big thing. People have to have patience.”

During the hard years, “Everyone said, ‘That Tim; he’s a nut!’” At his turning point, “That’s when I found out what ‘peers’ meant.” Now Tim can receive and give support—and he’s discovered that giving is as important to his wellness as receiving.

For information on the Veterans Affairs, go to http://www.mentalhealth.va.gov/ or call 1-800-273-8255 and press 1.

For links to RLCs in Massachusetts, go to http://www.mass.gov/eohhs/consumer/behavioral-health/mental-health/recovery-learning-communities.html.

For more information on the Transformation Center, go to http://transformation-center.org/.

Janet’s Room –>

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.”

“I have?”

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.

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.

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/.

“Family should be a safe place where you could have your worst days and still be loved.” -An interview about depression and family

“I was pretty sure his depression hadn’t passed, and he was on acting mode now.  I wasn’t sure how I felt about it.  Mum once said he trusted us and needed us to be ok with things; that’s why she put up with a lot.  Family should be a safe place where you could have your worst days and still be loved.” 

T. J. Wooldridge wrote the above passage about a character struggling with bipolar disorder in her new book, The Kelpie. (Available everywhere books and ebooks are sold December 2013) I include it here to introduce the following interviews with family members of a woman who lives with depression. They kindly agreed to be interviewed on condition of anonymity. N also agreed to the project on the same condition.

N’s immediate family is composed of her mother, father, younger sister, younger brother, brother-in-law, niece, and nephew. Her depression manifested when she was a teenager, went into remission with the help of medication for several years, and then reappeared. During the remission period, her sister married her brother-in-law, so that when her illness resurfaced, he had to adjust to what the rest of the family already knew well. Frequently, N’s depression worsened to the point that she experienced suicidal thoughts, which led to stays in psychiatric hospitals.

I met N’s father at a conference, and I told him that I often write blog posts about disabilities, especially invisible ones. He shared with me some stories of living with N and spoke movingly of the need to educate the public on this topic, which is too often stigmatized and hushed up. Our conversation ended with his suggestion that I interview his family about their experiences living with N and her illness. I am very grateful to all of them for being so open with a stranger on such an intimate topic.

N’s parents talk about the challenges of parenting a child with mental illness.

Mother: There we were, lying in bed, and the police officers came in and flashed their flashlights at us and said, “Your daughter is suicidal and we’re taking her to the hospital.” Such an invasion of privacy! Robotically, I got out of bed and dressed and went to the hospital. I didn’t have feelings until later. I had a job to do: I had to make sure N was safe.

Father: Having a daughter with depression is more challenging than I knew child-raising could be. We were constantly scrambling to play catch-up with a changing situation as it unfolded.

Mother: My daughter would cry at times at night in her room, and couldn’t explain why or what made her sad, and for me it was such a helpless feeling. I didn’t know how to help when I didn’t know an event that made her sad. There was just tears and sadness coming from inside. I never gave up the hope of understanding her, but there were lots of times I just didn’t get it. I couldn’t connect with my own daughter. It was a very, very lonely feeling.

Her siblings and parents had to contend with the fear and knowledge that N might harm herself.

Brother: The whole thing is twisted by my age at the time. I didn’t know what was going on. N used to ask me, “If you were going to kill yourself, how would you do it?” I didn’t know that was an unusual thing to talk about with your big sister.

Mother: I got a phone call from one of my daughter’s friends that my daughter had talked about suicide. I called the doctor; she told me to take my daughter to the hospital and she would be checked out by a process that I knew nothing about. That’s when I was told that she’d been self-injuring—she’d been cutting herself—and she was exhibiting signs of depression. I felt like I was in a strange country. I didn’t know the language. I didn’t know the people. I didn’t know what to do. I’d never heard of cutting. I was—I’m sure I still am—very naïve.

Sister: I remember when Mother and Father sat Brother and I down at the table and told us that N had written a friend a note that said, “Please don’t let me kill myself.” It was very scary and shocking, but I didn’t quite believe it. Like, really? As a kid, you adapt. I remember all the knives in the kitchen were locked up, which is pretty odd, but that just became the norm. We had to have these different little things. It became my life.

Father: It got to be that at the end of every day, exhausted from not sleeping well the night before, she’d have long, tearful phone calls with friends, in her room with the door closed. We’d wonder if she was okay and want to check on her, and especially wonder if she might have tried to kill herself. But if we tried to check on her, we might wake her up and make things worse. So that was really hard, and made it really hard for us to go to sleep and get a good night’s rest.

Father: There’s this possibility that’s always there that her suicidality will drive her to terrible action. It’s relentless. You have to stay with it and you can’t relax. It can be tremendously discouraging. You don’t see if it can ever end.

Mother: Gradually the illness, for want of any other word, blossomed. Things were coming out in the open that I hadn’t even known about. There were upsets; there were angry times.

N had to be hospitalized nine times in less than two years.

Father: I remember getting a call at work from a hospital that I didn’t know, saying that N would be admitted to a psychiatric ward. It was just startling. I’d never been to a psychiatric hospital. I didn’t know anything about it.

Brother: I remember the first time we visited N in the hospital. I wasn’t old enough to come in to see her and it kind of pissed me off. Come on, I came out to see my sister and I want to see her!

Mother: We’d all come to see her; we’d bring the other kids; but oh, it was just so hard.

Mother: One time I took her to the hospital by myself. I just fell over crying. I just couldn’t function. The nurse held me. She said, “She’ll be okay. We’ll take care of her.”

Brother: I do remember N leaving at one in the morning in an ambulance one or two times, and being told, “Why don’t you go back to sleep now?” And I’m like, “Really?”

Mother: We tried to keep the other kids’ lives relatively normal. In a way, we stopped paying so much attention to the two of them. To this day I don’t know how they felt about that.

Mother: Such a busy time. It felt like we were living three lives at one time. It seemed like there was always something new around the corner that you didn’t know what to do with, but you just did the best you could.

When the depression worsened again, N’s brother-in-law and her niece and nephew had to deal with the fact that N had an illness.

Brother-in-law: I loved N as a sister. When she got sick again I was really scared. I’ve never known someone with depression, not to the extent of harming themselves or getting so sad.

Brother-in-law: I don’t know how hard it is on her. I just know how hard it is on everyone who loves her, because I’m one of those people. It didn’t seem right for someone I loved to go through that.

Sister: Bringing Niece to the hospital didn’t feel like a huge deal to me. We talked about how she wouldn’t catch what N had. She was just like, “Oh, okay.” N having this thing is just a part of my life. Bringing my daughter is the next step. N’s in the hospital and I wanted to visit her so I brought Niece.

Sister: N watching Niece, the whole babysitting part, that’s a little…I don’t know if scary is the right word. That unknown: that you can’t 100 percent depend on what might happen. It’s not N. She’s 100 percent dependable. It’s…unpredictable, I guess is the way to put it.

Brother-in-law: Now that I’ve seen a glimpse into something, there’s always a little hesitation with Nephew and Niece, to be honest.

Brother-in-law: But getting to see the N in her, getting to see the N I knew. It’s almost like there’s a stranger in her. A stranger that’s just so sad. And that’s what I’m hesitant about. I didn’t know that person.

N’s illness has made the family realize the strength of their bonds to each other more than they might have otherwise.

Mother: A turning point for us was in our Christmas letter. We wrote, I think “manic-depressive” was her diagnosis at the time. That brought letters from family and friends who either knew something or just wanted to offer their love. And that was wonderful. But we were also left with how to help N and that wasn’t clear at all.

Brother: In general, when someone is continually sad living with you, you take some on yourself. And I’m sure N takes some on herself.

Father: At times we can’t help but see it as some people expect: that this person is choosing to make her and our life difficult and to some degree it’s her fault. But if you’re close enough to it, you know nobody chooses this, that it’s an affliction that strikes. You feel motivated to help, the same way you would if your daughter had been struck by a falling tree or any other calamity.

Sister: It changes your perspective on mental illness. My perspective is definitely different, more understanding, because I have someone in my family.

Brother-in-law: I don’t know if it’s because of the depression that N has become closer to her family than most.

Father: That sense of family is strengthened by the shared struggle to advert this threatening thing.

Brother-in-law: I’m really happy she’s my sister. I married the family; I didn’t just marry Sister.

Sister: We all still love her.

Father: Is there any limit to how much a parent loves their kid? I mean, we’d do anything.

Mother: I don’t love her even though she’s sick. I love her because she’s who she is. I’ll love her no matter what.

National Alliance on Mental Illness Advocacy Day, 4/2/12

Originally published in “The Bridge,” affiliate newsletter of NAMI Central Middlesex, MA, in May 2012

On April 2 2012, approximately 175 NAMI members and friends met at the Massachusetts State House to listen to speakers, enjoy a free lunch, and petition their legislators. The causes chosen for petition were: education for Massachusetts police, EMTs, and firefighters about mental illness episodes (as opposed to crimes); and funding for the Department of Mental Health. More funds for both these causes would result in long-term financial savings for the State, as well as being more humane for the people involved.

During the long wait to get through security before entering the State House, people talked about why they were there. Voices were determined, passionate, and occasionally bitterly angry. People told personal stories about injustice towards the mentally ill. The stories started with “My brother…”, “My son…”, and “When I was in the hospital…” Later, inside, after a speech by a woman helped by DMH, NAMI Massachusetts executive director Laurie Martinelli said, “This story can be repeated at every table in this room.” There were nods everywhere, some emphatic, some tearful, as people remembered those stories shared in line at security. People are personally invested in this vital cause.

The presentation began with a video by Patrick Kennedy. It was followed with speeches by Senate President Therese Murray, State Representative James O’Day, Ms. Mary Munsell (who lives with mental illness), and Mr. Joe Giannino of NAMI Massachusetts legislative affairs. Over and over people emphasized the need for more understanding and funding. Ms. Munsell demanded, “Aren’t our lives worth investing in?” Rep. O’Day pointed out that funding for DMH has gone down despite the fact that the number of ill individuals is “not decreasing.” Mr. Giannino said, “Just because the dollars are drying up, doesn’t mean the individuals are drying up.” Both men denounced this situation as unacceptable.

And yet, there was an undertone of acknowledgement that money is limited and NAMI’s cause is perhaps not the first cause to be granted funding when budgets are, inevitably, reconsidered. Rep. O’Day promised, “I will do my very best” to achieve NAMI’s petition goals; he did not promise he would be able to achieve them or even get close to doing so. When this reporter petitioned the aides of her representative and senator, she received a similar message: lots of nodding and “Yes, that’s very important;” no promises.

We still have work to do.

For more information on NAMI, see www.nami.org.