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/.

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/.

Reading lips in low light

Dad and Mom and I were on our way to a play at a theater. It was billed as a “one-woman play” about accepting those who are differently-abled. We were running late.

Usually, we plan to get to a theater at least 15 minutes early, so that Dad can find the lights-and-sound person and learn about any assisting devices they might have for the hearing impaired. The best places have a system that beams the sound from the microphones straight to his hearing aids. This is rare. However, many have some sort of amplification system he can use. He has to take what he can get and hope that he can understand enough to enjoy the show.

This time, we were so late, Dad opted to forgo this process and just sit down. We found out later what a mistake that was.

It turned out it wasn’t really a one-woman play. It was one woman, all right, but she didn’t act in the way I am used to in a conventional play. It was closer to a live radio show. The actor stood at the microphone and spoke for two hours with humor and poignancy. She told about her daughter’s special needs and the family’s search for doctors’ help. She used different voices for different characters, embellishing the humorous parts with exaggerated tones of voice.

Mom and I were so wrapped up with enjoying the play that we didn’t notice what Dad was going through, sitting next to us. We didn’t find out until the car ride home what he had endured while we were being entertained.

He hadn’t been able to understand a word of it. Because of the low light, he had been unable to see the woman’s lips, so he didn’t know what she was saying. He had sat there, in the dark theater, for two hours, struggling to get something from the show, and failing. He was frustrated beyond belief.

In the car on the way home he vented that frustration on Mom and me. He raved. He questioned why the lights had been so low and stated that they must have known that it would make the hearing impaired in the audience unable to understand. He went so far as to say that they turned down the lights on purpose so he couldn’t understand.

Dad’s a rational guy, and in his usual state of mind he would know this was not true. But that night he was simply frustrated out of his mind at the world that does not accommodate his needs and his disability.

I don’t know why he sat there, patiently, silently, that whole time. I don’t know why he didn’t quietly leave the theater and ask the manager to turn up the lights. I’m sure they would have tried to make it so he could enjoy the play. Maybe he felt that wouldn’t be polite. Maybe he didn’t want to make waves. Maybe he’s just met so many people who don’t understand how debilitating hearing impairment can be, and thus are unwilling to accommodate him, that he has stopped trying.

And this is all something Dad experienced at a play about understanding different abilities, of all things!

“Don’t give up”: A true story of struggle and hope

Looking at Kelsey, one might not know that she has a severe and unusual physical disability. She greets me with her open smile, walks to the kitchen, and reaches up into a cabinet to show me her varieties of teas as she offers me a cup. She moves normally and with seeming ease. Only the presence of her service dog Curran, always nearby, hints at anything unusual. So what’s the problem?

Kelsey was born with Ehlers-Danlos Syndrome, a connective tissue disease. “There’s nothing holding my joints in place,” she explains. It makes many common tasks difficult, dangerous, impossible, or simply very painful. Anything that involves moving parts of her body, especially her wrists and ankles, is difficult and can cause pain or injury. She cannot carry large items or walk long distances. If she falls, she cannot get up without special assistance. On her bad days, she is sometimes confined to bed, simply because moving at all is too painful. “I will always live with pain,” she says matter-of-factly.

When she was a teenager, she relates, “I had friends I wanted to hang out with and have fun.” Unfortunately, her doctors told her that to maintain her physical abilities and lead a ‘normal’ life she had to spend all her afterschool hours at the hospital doing physical therapy. The peer pressure was too much for her as a teenager, and “I ended up quitting physical therapy so I could hang out with my friends,” she admits. “I didn’t know how dire a decision that was. For the next six months, I didn’t do any physical therapy. The pain got worse. Fatigue was overwhelming. Any little task took too much energy. I wanted to be a teenager a lot, but I couldn’t be one” in the same way all her friends could.

One doctor suggested a service dog might “help tremendously.” After a chance meeting with a NEADS volunteer and a four-month stint with a different dog that didn’t work out, Kelsey ended up paired with Curran, the black lab who sits at her feet as I interview her. “I didn’t know how much my life would change when I got Curran. My whole outlook was happier.”

Curran helps Kelsey in many ways, both physical and emotional. He is always attentive to her, and knows her so well that he sometimes realizes a developing problem before Kelsey herself. “We have this system of checking in with each other. If my gait changes, or if I’m about to go down and I don’t know it, he can let me know. He puts his muzzle in my hand. I look down to see if there’s something wrong with him, and if there isn’t, I need to check inwardly.”

Curran also can fetch help in an emergency. On one occasion, “I was in the parking lot of our apartment complex. My ankle went out, and I went down and couldn’t get up. Curran started barking. When that didn’t get attention, I told him, ‘Get Ama.’” Curran had been trained to fetch Kelsey’s mother at this command. “He went and stood outside the door and barked. Curran brought her straight to me.

“He’s trained to bark until it’s so annoying that someone comes. I can go out. I don’t need to have my mom there. He’s my security blanket.”

But Curran’s help is more than these physical tasks and security. The emotional benefits he gives Kelsey are immense: he has given her back the motivation she had lost. “He would help me with everyday tasks, but I needed to pay it back by taking him for walks and giving him love. Right, buddy?” She pats Curran affectionately, and he responds by licking her hands. “I didn’t know how much I needed a dog that needed me as much as I needed him. There’s not a day goes by that he doesn’t do something for me.”

Today, Kelsey lives with her mother and Curran. She spends a significant portion of her time on physical therapy. “Being able to put on my own clothes and go up and down stairs outweighs the cons of the work and the pain.” However, she also has time to meet with friends and to create the art she loves so much. She says she has to “find strategies to make it easier for myself. Like, I can’t sketch because I can’t hold the pencil. So I have a tool that holds the pencil and my hand together, so I don’t have to use my muscles to hold it.”

Four years later, she looks back on those six months without physical therapy, and the addition of Curran to her life, as a turning point. “I needed to be at the bottom before I realized that it was much better to be at the top.

“Don’t give up just because you think it’s hard. You never know, if you get stronger, what you might be able to do.”

For more information on NEADS, the service dog organization that matched Kelsey with Curran, see neads.org.

For more information on Ehlers-Danlos Syndrome, see ednf.org.

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.