Friday, February 13, 2015

A Smoothie Won't Save My Child

Smoothies are undoubtedly delicious. But they don't cure
mental illness. Photo by Richard Dudley, freeimages.com
Why We Need Substantive Mental Health Reform Now

On Wednesday, February 11, 2015, I tuned in to C-SPAN to watch Representative Tim Murphy and the House Oversight and Investigations SubCommittee address concerns about a lack of leadership in mental health. The hearing was convened in response to a disturbing and disappointing report from the GAO that exposed the lack of care provided to people with serious mental illness. In her testimony, SAMHSA director Pamela Hyde, an attorney, essentially admitted that she doesn’t believe serious mental illness exists, but rather that people move in and out of illness and recovery.

I’m not sure what the job qualifications are for someone who heads up a multi-billion dollar organization tasked with coordinating care for people with mental illness. But I’m pretty sure one of them should be actually believing that mental illness exists. What if the head of the Department of Health and Human Services was an antivaxxer whose response to the Disneyland measles outbreak was to tell parents to exercise their free choice and take their kids to measles parties? Would we let that person keep her job? To me, this analogy describes Ms. Hyde’s dangerous position on mental illness, or as she prefers to call it, “behavioral health.”

Make no mistake: we’re in a public health crisis with mental illness, one that is far more serious than the measles outbreak. We need our leaders to acknowledge the scope of this crisis and to take decisive action, now.

That same morning, as I watched the hearing, I received a desperate plea by email. The author has given me permission to share this story with you, though I will not share her name, because this is an ongoing situation. But her story puts a human face on the GAO report and the magnitude of the health crisis that parents of children with mental illness are experiencing.

I hope that Pamela Hyde and all the people who think that mental illness doesn't exist read this desperate parent's plea. I hope Ms. Hyde starts to understand how badly our mental healthcare system has failed children, families, and communities. And then I hope she drinks a smoothie, one of SAMHSA's recommended treatments for behavioral health—and quietly resigns.

A Mother's Story

This is so hard for me. I had hoped and prayed that my daughter’s illness could be handled in private, and I fiercely protected her privacy. I’ve made up all kinds of stories trying to cover up where she is and what she is doing. When something did come out publicly, I put a spin on it because I was worried about how stigma would affect her.

But now her illness has caused her to end up missing for nearly
five days. So now I must tell you what it’s like to live this nightmare every day.

And I want all of you, ESPECIALLY those of you who think you know exactly what you would do if you were me, to SHUT UP AND LISTEN TO ME!

Just shut up NOW! 

Now you may be wondering how we got here. Well, my daughter has been struggling for a long time. While her diagnosis, signs and symptoms as well as the details regarding her disappearance aren’t something  I will share, I will share the following: 

Self-directed treatments. FAIL. 
Forced hospitalizations. FAIL. 
Voluntary hospitalizations. FAIL
Conventional Treatment. Alternative Treatment. FAIL. FAIL.
No meds. Too many meds. Right amount of meds. FAIL FAIL FAIL
FAIL.

I let her go. I hung on. I told her what to do. I backed off. 

I got into her business. I gave her privacy.

I surrounded her with loved ones. I left her alone. 

I attached. I detached.

I encouraged her to get a job. I encouraged her to go on disability.

I went to work to keep myself occupied and give structure to my life, and then I had to quit my job in order to accommodate her illness. 

I spent every dime I had in the bank.  

I researched every illness that could induce such behavior. I took her to specialists.
I was even schooled on boundaries by her and her therapist. I was told that I needed to let HER decide everything. 

Did you know that a person in a state of full-blown psychosis gets to have a say in their treatment?

And did you know that an adult with severe mental illness can exclude everyone, including their caregivers from having access to information?

We were told that the only thing that would work was for her to be admitted to a full time residential facility. However, due to the public facility being booked and our inability to afford the expensive price tag for private care, we had no options except what our insurance would pay. So I confidently looked to our insurance company and trusted that they would pay for her recommended care. 

FAIL. Even though our coverage offers residential treatment, they only approve two to three days at a time. You get the authorization usually at the end of the third day. They normally decline and you have to appeal. And no matter what the doctor recommends, some pencil pushing bureaucrats at the insurance company get to decide whether or not your child is doing better and will approve or deny based on their decision, not the doctor’s. 

Offering residential looks good in the employee handbook, but doesn’t mean much when they can wiggle out of it when they don’t want to pay.

My daughter was doing quite well in her program until they refused to pay after two weeks. 

I contacted dozens of therapeutic communities, farms, and other residential settings from across the country. But the cost of care averaged $10,000 per month. I don’t have that kind of money. 
And all those famous programs you read about, you know, the ones with the slick ads? Try $2,000 per DAY! And they don’t take insurance.

But even if we could afford it, these care facilities won’t take my daughter if she doesn’t want to be there.
And I could NOT make her. I considered conservatorship, but the private facility where she was going would not accept her with it. Like many private facilities, they will only accept a patient who is going there willingly.  

Her so-called "rights" as a patient with mental illness assure her the opportunity to even live homeless if she chooses, no matter how sick she is. Hey, it’s her "choice"!

So last September, with no other options available, I brought her home. 

I hoped and prayed that things were going to continue to get better for her. I watched for signs. Then last week, she started showing signs of decompensation. I had started the process of getting her back to the doctor when it all came crashing down. 

And then she took off for five days. Today she is back safe and in a hospital, but what will happen next is anyone’s guess.

The bottom line is that like many people with severe mental illness, my daughter needs full-time,and if necessary, court ordered residential medical care. You can love your child, but the family isn’t enough when they need constant supervision. And you can allow them certain freedoms, but when they are too ill to make decisions, you need support in forcing them to get care.

I believe full time supervision would have prevented this downturn.

And as much as I believe that Assisted Outpatient Treatment needs to be an option for people with mental illness who are able to remain in their communities, I don’t think in her case that it would work. I was already told that a first request for it would more than likely denied, especially since she had recently agreed to go to therapy and follow protocol. 

My daughter is a highly gifted young woman with a world of opportunities waiting for her, but sadly, thanks to this mental illness, she is now disabled.

For years I have tried to figure out what went wrong. I have analyzed nearly every interaction and I cannot figure it all out. 

And I can sit here all day, with all the other caregivers who live this nightmare daily and blame myself and try to figure out what I could have done differently.

But I can’t figure it out.

I do know that I have loved this girl from the moment of conception, and I cannot fully express to you how bad my heart hurts over this.

But I just can’t save her. I really tried. Our whole family did. 

But nothing works except residential care. 

And I’m hoping that we can access that care for her before it’s too late.

Thursday, February 5, 2015

5 Real Ways to Combat Mental Illness

The brain is the mind.
Photo courtesy of Cabeza Rapada,
www.freeimages.com
(Hint: One of Them Isn't Calling It "Mental Health")

Every morning, I wake up to an inbox with messages like this (identifying details changed):

"I just read your piece titled 'I am Adam Lanza's mother.' It rang true to me in every way. My son is 10 years old and he has been in 12 different schools, four behavioral centers and continues to get worse. He talks openly about how he is going to kill us all. He hides knives in his room, attacks, steals, screams profanity."

Or this: 

"I've been diagnosed with depression, anxiety, panic disorder, PTSD, Intermittent Explosive Disorder, Bipolar, and I'm recovering from drug/alcohol addictions. I have never been able to see a quality therapist or psychologist. One time I found one that I liked and then stopped going because my insurance changed. The mental health care system in this country is appalling."

Or this:

"I have experienced aspects of what you are writing about with a sibling who has bi-polar--extreme depression and suicide attempts. In fact she's been in ICU for the past two weeks, so my other sister and I continually search for answers in how best to care for her."

Or this:
"I never know how to tell people how scared I am. Right now I am well controlled with medication but I am terrified. What happens if my meds stop working and I can't control myself?"

And then, as I'm searching the Internet for real solutions to help my friends, my HuffPost mental health alert sends me this: "5 Real Ways to Combat the Stigma around Mental Health.

Apparently, a bunch of experts got together and came up with some suggestions for ending stigma. The problem is that they're the same suggestions we've been hearing for 20 years now. And the stigma needle, despite all this anti-stigma talk, is not budging.

I'm all for ending stigma, especially the self-stigma that keeps parents from asking for help or consumers from feeling okay about their medical treatment. As an example, I just had a conversation with a friend who has bipolar disorder. She admitted that she felt bad that she had to take medication to manage her condition. 

"But when I don't take my meds, I don't feel like me," she said. "Plus, my life starts to fall apart. I like this me, the 'me' that is in school, working, making a better life for myself. But I feel like I should be able to manage this on my own, without meds."

My jaw dropped. I have hypothyroidism. I have never once felt guilty for taking my daily thyroid medication or thought that I ought to manage my thyroid condition "on my own, without meds." 

You know what might end the stigma of mental illness? Treating it for what it is: illness.

While the experts talk about mental health, here are my suggestions for five real ways to combat mental illness:

1. Make early intervention a top priority. Pediatricians should all be trained to include mental health questions in well child visits. Shocked that a child of 5 might express suicidal thoughts? I know hundreds of families who have had that experience. The earlier we can get children and families help, the more likely they are to manage the illness and lead productive lives. And new care models developed at Yale University suggest that intervention right after first episode psychosis can improve long term outcomes for young people with schizophrenia. 

2. Train more psychiatrists and increase access to care for people with mental illness. Instead of teaching community leaders to look for signs of depression, we should be focused on training a workforce that is competent and capable of delivering evidence-based care to people who need help. The shortage of psychiatrists, especially those who work with children, is a real and growing problem.

3. Stop saying "mental illness," and start saying "illness." I'm not suggesting that we should stop talking about mental health, by the way. But serious mental illness is physical illness. Mental health is important to everyone, and people with any type of chronic health condition are at greater risk of depression . But as long as we keep artificially separating serious mental illness and serious physical illness, stigma will remain, and true parity will never be achieved. People will continue to think that mental illness is a choice or a character flaw.

4. Listen to families and provide them with actual support. Maybe you saw the story about the Virginia mother who is prepared to face child abandonment charges rather than bring her 12-year old son home from jail.  The comments on this story show just how pervasive this problem is. People who aren't living this experience seem to think that there's some place we parents can go to get help for our children. Some of us jokingly refer to this place as "CandyLand." 

5. Enough talk; it's time for action. We are getting really good about talking about mental illness. I have no problem telling you that I was treated for depression. My son, who has bipolar disorder, has no problem telling strangers in the grocery store checkout line that lithium has completely changed his life. It seems like every day, a celebrity or athlete shares his or her struggle with mental illness. And that's a good thing. But what about those whose voices aren't being heard? What about the people in prison, or living on the streets? When will we stop talking and take action to help them? Peer support is a good start, but some of us need more. Assisted Outpatient Treatment is one community services program that has enabled people with serious mental illness to live in their communities and stop the revolving door of incarceration and homelessness. 

I'm tired of hearing stories from suffering families. It's time for the experts to sit down and have a real conversation about mental illness and how we, as a society, can offer them help and hope.

Tuesday, January 27, 2015

The Anarchist Soccer Mom Goes to Washington

I hope Congress can give themselves a facelift and pass mental
health reform legislation that will help children and families!
Lessons in Speaking Up—and Listening

I’m a mom. What that means for me, as it means for so many moms, is that I rarely think of myself first. When I have to choose between hearing the President of the United States speak in my hometown or picking up my kids from school, I pick up my kids. When I’m cooking dinner, I fix their favorite canned tuna and white rice instead of the lamb curry vindaloo and brown rice I would prefer to eat. Rather than spending money on spa treatments for me, I buy soccer camps or ice skating lessons for them.

But this week, I did something all for me. I bought a last minute plane ticket from Boise, Idaho to Washington, D.C. and flew into the outer edges of Winter Storm Juno to attend the presentation of the well-deserved Treatment Advocacy Center E.F. Torrey Award to Representative Tim Murphy (R-PA), a man I and many other families of children with mental illness view as a hero.

Two years ago, in a gut-wrenching response to the Newtown tragedy, I told our family’s painful story on my formerly anonymous blog. My essay was picked up by Boise State University’s The Blue Review and retitled as “I Am Adam Lanza’s Mother” (thanks, @paleomedia). Overnight, I became an accidental advocate for mental illness, speaking up for families and children everywhere who could not find anyone to listen to their stories. Then I wrote a book, The Price of Silence, telling some of those families’ stories, describing the numerous barriers to care that we face, and identifying solutions that already exist in some communities.

Now, it seems that lots of people are talking about mental illness, and that’s a good thing. But I wonder if people are listening.

Every day, there’s another tragedy in my Twitter feed: a father (or mother) tosses a child from a bridge, a mother attempts to kill herchildren, an estranged boyfriend kills a woman and her daughter, a police officer shoots a 17-year old girl. Every day, hundreds of thousands of people with mental illness suffer on the streets while millions more languish in prison. Meanwhile, states slash mental health budgets, and families continue to live onthe brink, as they did 15 years ago.

Today in his acceptance speech, I heard Representative Murphy offer, once again, a vision of hope. He talked about the need for better options, from early intervention to peer support to assisted outpatient treatment that can keep people with serious mental illness in the community and out of prison. As National Institute of Mental Health Director Thomas Insel and American Psychiatric Association President Paul Summergrad looked on, Representative Murphy encouraged research into new treatments that can help people with serious mental illness live productive, happy lives. He talked about ending discriminatory regulations that prevent people with mental illness from seeing a physical doctor and a mental health specialist on the same day and about expanded inpatient treatment options (instead of jail) for those who desperately need them.

I have to admit that one thing made me especially glad: in discussing his proposed new legislation, it seems like Representative Murphy is listening. And that’s important. But has one advocate noted, the voices of people who have serious mental illness are important too.

How do we hear the voices that serious mental illness has silenced? How do we ensure that we do not merely “bring back the asylums,” as one recent provocative JAMA article proposed, but that we create comprehensive services for individuals, families, and communities?

The word “advocate” means to speak up for something you believe in. But sometimes, advocacy also means respectfully listening to people who disagree with you. That’s a lesson our current Congress needs to learn. I hope that the Capitol’s denizens can repair their rifts (as the building itself gets a facelift) during this next session. It has become very easy in this world of fast information to tune out voices that disagree. But as a scholar and as an advocate, I prefer to surround myself with the voices of people who think about these complex problems in different ways. I do not feel threatened by other advocates who see these problems—and their solutions—differently than I do.

But one thing I think we all agree on is this: the current mental health care system is broken. We see the proof in our suicide and incarceration rates. Barriers to mental health care—however you define it—are massive and omnipresent. As one of my opposition-minded friends noted, whatever you think of Representative Murphy’s proposed legislation, at least he got us all talking about the problem. No bill, however well-intentioned, is ever perfect. But I applaud Representative Murphy for rising once again to the challenge of bringing our different voices together in a clarion call for change and hope. Let 2015 be the year we can listen to each other—and by listening, learn to help each other and those among us who suffer most.


P.S. Thanks to a supportive and amazing spouse who got the kids to school, fixed their dinner, and supported me in this once-in-a-lifetime opportunity. Love you, Babe!

Monday, January 19, 2015

5 Reasons I Wish We Would Stop Talking about "Recovery" for Serious Mental Illness

And the word I wish we would use instead

My heart hurts today. My friend Laura Pogliano has lost her 22-year old son Zac, who had paranoid schizophrenia. Both Laura and Zac were tireless and passionate advocates for ending the stigma of mental illness. Their story was featured in USA Today's "Cost of Not Caring" series, where Laura described herself as a "fortunate" mother--fortunate because despite personal bankruptcy, she had been able to obtain treatment that seemed to be working for her son. This tragic turn reminds all of us mothers just how fragile life is for our children who have serious mental illness. As a parent of a child with bipolar disorder, my worst nightmare is what happened to Laura and her son.

There's a popular quote floating around mental health advocacy circles: "Mental illness is not a choice. But recovery is." I know people will disagree with me, but today, I'm tired of that sentiment, and I wish we would retire the word "recovery." When local and national mental health policy is shaped by high-functioning consumers who have been able to manage their illnesses rather than by the sickest patients and their families, it's the equivalent of only allowing stage 1 cancer survivors to drive the narrative and take most of the funds. While their courage is admirable and their struggles are genuine, too often, we lose sight of those who are suffering the most. They become invisible to us, marginalized on the streets or in prison. Or they die young, like Zac.

I wish we would stop talking about recovery and replace it with a more useful, less stigmatizing word: hope.

Here are five reasons I wish we would stop using the word "recovery" for serious mental illness. 

  1. Not everyone recovers. The word "recovery" has become central to mental healthcare, from the top down. In fact, the Substance Abuse and Mental Health Services Administration's stated mission is that "People recover." With serious mental illness, that's not true. People recover from head colds. They recover from chicken pox. They recover from situational depression. They even recover from trauma. But some diseases are lifelong. Like diabetes, or Parkinson's disease, or multiple sclerosis, serious mental illness is a lifelong, chronic health condition.
  2. Recovery and its partner phrase, behavioral health, imply that mental illness is a choice. Mental illness is not a choice or a character flaw. The focus on "behavioral health" unintentionally stigmatizes the very people that SAMHSA is meant to help: those with serious mental illness.
  3. The word "recovery" suggests that people need to return to a "normal" state, rather than embrace their differences. What does a person with bipolar disorder or autism need to "recover" from? When people realize they are not their diagnoses, they can start to find things that actually work to help them live successful and productive lives. That's hope, not recovery.
  4. The concept of recovery increases stigma, both within and outside the mental health community. Again, if people recover, why aren't you recovering? It must be a choice you are making, or something you're doing wrong. Some people tell you the medications you take are preventing you from recovery. Others tell you that your choice to stop medication is preventing you from recovery. Who is right? Hope is a universal concept that embraces a wide range of possibilities. Recovery seems dependent on a prescribed set of treatments that may not work for everyone.
  5. Recovery is an unrealistic standard for any chronic illness, including mental illness. We would never apply the blanket expectation of recovery to any other chronic illness or disability. With cancer and autoimmune disorders, we use the term "remission" to describe a life-threatening systemic illness that with luck and treatment has been stopped in its tracks. With other chronic illnesses like diabetes, we talk about managing the illness. But with mental illness, we expect people to "choose" recovery, even when they are experiencing psychosis, or when their disease steals their ability to make rational choices.

Behavioral health is an important concept for everyone. We should all focus on our behavioral health: on diet, exercise, mindfulness, good sleep habits. But behavioral health is not mental illness. Mental illness is physical illness. For people with serious mental illness, behavioral health alone will not "fix" or "cure" the chronic condition, and for us to expect otherwise is unrealistic and cruel. We need to focus on effective treatments, not inaccurate judgments about what we "believe" or "feel" mental illness is. It's a very real health challenge, with real and sometimes devastating consequences for those who live with it and their families. 

Let's keep talking about behavioral health for everyone. But let's stop talking about recovery for serious mental illness and start celebrating people whose brain disorders cause them to live with health challenges comparable to those experienced by cancer patients. The word we need, in the face of so much loss, is hope. Mental illness is not a choice. But hope is. Even in the face of tragedy, today I choose hope.

Thursday, January 15, 2015

A Modest Apology

Three suggestions for kinder, gentler, more accurate social media posts

Wise words from a man who never said them.
Did you know James Franco is dead? Or that Idaho Governor Butch Otter thinks poor people are genetically inferior? Or that British author Jonathan Swift thinks the solution to world hunger is to eat babies? None of these stories is true, but the first two fake articles from a satirical content producer called City World News made the Internet rounds in the past few weeks and baited more than a few readers. I was one of them. I made the very public and easily avoidable mistake of believing (and worse, tweeting) the story about Governor Otter.

Satire has a long and colorful history, one that has been particularly prominent in the discussion of the tragic terrorist attack on Charlie Hebdo. While hardly anyone would defend shooting cartoonists, for a surprising number of people, the answer to the question, “Can’t you take a joke?” seems to be “no.” In the case of Governor Otter, I didn’t see the satire, perhaps because I spend a significant portion of my time trying to defend the rights of people that society just doesn’t care about. Many of the real news stories that cross my Twitter feed every day—people with mental illness shot and killed by police, or dying in solitary confinement, or being refused treatment in emergency rooms, or facing the death penalty for actions that were a result of their illness—are true.

Anyway, I screwed up. It was mea culpa, and a few of my friends very kindly pointed out my mistake. But one friend was a little less kind. She wrote: “People who blindly promote satire as truth risk diminishing their own validity.” 

At first, I thought her comment was a little harsh. I mean, I work full time, take care of four kids, and in my so-called “spare” time, I’m buried in dissertation research. You know, too busy to check my sources, right?

Wrong. My friend was right. And the thing is, validity and credibility really matter to me. So here are three suggestions I’ve come up with for myself to ensure that going forward, I tweet more responsibly.

  1. Don’t send late night tweets. When I read the Otter story, it was at the end of a long day. Work was intense. The kids were fun—but exhausting. It’s entirely possible that I was unwinding with a glass of cabernet when I read the outrageous “article” I retweeted without checking my source. I should have turned the phone off when I got home and enjoyed a good book instead. Lesson learned: No more late night tweets.
  2. Always check your sources. As Abraham Lincoln famously did not say, “The problem with Internet quotes is that you can’t always depend on their accuracy.” www.snopes.com is my favorite source for fact-checking urban legends. Lesson learned: It takes ten seconds to check a story on Snopes. But if you tweet something that isn’t true, you may look like a fool on the Internet forever.
  3. Be charitable in correcting people who tweet inaccurate information. The challenge with information these days is that it’s moving so fast. My friend’s comment struck me as harsh—but it reminded me that I’ve made similar “You really should have checked your sources” comments in the past on other friends’ posts.  Lesson learned: You don’t always have to be right. Sometimes it’s okay to be kind—to yourself and to others.

We all make mistakes. And though I regret my inaccurate tweet, I don’t regret standing up for the rights of people who are treated unfairly. I’ll continue to tweet about social justice, while following my own advice about slowing down and checking my sources—and hopefully my followers will not feel that my validity and credibility are too tarnished by one mistake. 

(And with respect to Governor Otter and City World News, props to the person who got me to tweet a false story that points at a larger uglier truth! Jonathan Swift would be proud!).




Monday, January 12, 2015

Lost in Transition

The author in Budapest, 2007
I performed three Bartok folk songs yesterday. With the performance came this memory.

One rainy evening in early October 2007, on a winding residential street in Budapest, Hungary, I got lost. I pulled out my notebook, squinting at the greying street signs as I tried to decipher something about my location. “Utca,” I mumbled, looking at the hastily written glossary I had begun building the day before: “Alma=apple. Gyorgy=health. Ut=street.” So “utca” must mean lane or little street.

I was illiterate, surrounded on all sides by new construction, hastily built stucco and plaster mansions for the nouveau riche who were coming to the formerly Soviet country in droves. I had a sudden vision of my body, violated and strangled and tossed by Russian gangsters in one of the many blue dumpsters that held construction-site waste. The gruesome vision quickened my pace as the rain stung my face and bare arms in the fast encroaching dusk.

I was afraid and alone. I felt in that moment that if I disappeared, no one would miss me.

My then-husband and I were in Budapest so he could compete in the Rubik’s Cube World Championships. We had taken a romantic Danube cruise earlier that afternoon, admiring the soaring span of the rebuilt Elizabeth Bridge, the reconstructed Parliament building, the bleached white Fisherman’s lookout.

“I want to go for a walk,” I told him after the cruise. I hoped—how foolish!—he would offer to come with me.

“Fine,” he said. “I’ll meet you back at the hotel.” I was too proud to ask for help, too proud to admit how lonely I felt. So I walked away.

Now, cold and unprepared, I shivered, seeing the spider cracks in our foundation, spreading and threatening to destroy the entire edifice of our marriage. Our perfect marriage.

My cheeks were wet, though I couldn’t tell the tears from the rain. I thought of Thomas Wolfe: “A stone, a leaf, an unfound door, of a stone, a leaf, a door.” Where was the door that would set me free?

Then I heard the violin music. It was Bartok, a simple folk song, with words I had learned as a child to sing in English: “Give to me the roses red, two I said! One alone would die forlorn, e’er the morn. Oh, no no! Off you go! Both of them are mine.”

I had stumbled in my peripatetic folly upon a music academy, and I listened in delight to the clean, crisp, rhythmically surprising songs of the Hungarian composer I’d studied when I was young. The music filled me with the joy of childhood discovery, the sense that things were possible.

I climbed the nearest hill, the music receding into the twilight. Searching for the lights that glittered along the Danube, I saw my way back.

When I entered the hotel lobby, drenched, shivering, my husband did not look up from his varicolored cube. I stumbled to our room and collapsed into a merciful, dreamless sleep. When he told me the next day, “You don’t love me like you used to,” I looked away, remembered Bartok’s roses.


Tuesday, December 23, 2014

What Would Jesus Sing?

Maybe It's Time for Some New Christmas Carols

I was raised by Mormon hippies. In addition to traditional Christmas carols like “Hark, the Herald Angels Sing” and “We Wish You a Merry Christmas” (my father was especially fond of the “figgy pudding” verse), we learned the complete canon of 60s protest anthems, including one of my favorites, as sung by Peter, Paul, and Mary, “If I Had a Hammer.”  The song was written by Pete Seeger and Lee Hays in 1949 to reflect the progressive labor movement and experienced a “second coming” as a civil rights era anthem in the 60s. 

Remember when people could protest bad stuff and change the world?

It’s that time of year again—the time when media professionals take advantage of unusually quiet offices to compile their annual “Top Ten” lists. Most 2014 lists will likely lead with the tragic deaths of Michael Brown and Eric Garner (and perhaps of Brooklyn police officers Rafael Ramos, and Wenjian Liu)—manifestations of the same civil rights tragedies that my parents used to sing about 50 years ago. In fact, the past few years have seen several stories of marginalized people protesting privilege and power.

In 2011, Occupy Wall Street was declared the most important news story in a year that included the Gabby Giffords shooting by a man who had schizophrenia and the deaths of Osama bin Laden and Steve Jobs. I had a chance to see the Occupy movement for myself when I was visiting friends in November 2011, the weekend before Mayor Bloomberg shut the Zuccotti Park party down. My first-hand impressions were not positive. I talked to the self-proclaimed media liaison, a pleasant-faced union organizer who refused to give me his real name, though he told me he had been bussed in from Pittsburgh. We had an interesting discussion about classism and Marx, the kind you can’t generally have in Idaho. But while I wanted to sympathize with the message of the 99 percent, what I witnessed was less a collection of legitimate movement sympathizers and more an exploitation of homeless people, many with mental illness.

(Aside: 2011 also saw a black man, Troy Davis, executed by the state of Georgia for the 1989 murder of an off-duty white police officer. Davis steadfastly maintained his innocence, and there was no physical evidence linking him to the crime).

In 2012, the top stories were mass shootings: the tragic deaths of 20 first graders, 6 educators, Adam Lanza, and his mother in Newtown, Connecticut; and the Aurora, Colorado movie theater shooting by James Holmes, a young man with schizophrenia. The shootings trumped even the 2012 presidential election and Hurricane Sandy.

(Aside: In February 2012, an unarmed black teenager, Trayvon Martin, was shot and killed by George Zimmerman; according to Pew Research Center, 70 percent of blacks closely followed the story, while only 30 percent of whites cared.)

In 2013, we lost a cultural warrior, Nelson Mandela, and gained another one, Pope Francis. George Zimmerman was acquitted of second degree murder in the Martin case, sparking protests that have simmered and erupted ever since. Princess Kate had a baby, and two Chechen brothers brought terror back to America in the Boston Marathon bombings.

(Aside: The most prominent mass shooting of 2013, Eliot Rodger’s Santa Barbara rampage, didn’t make the top ten news stories, nor did any of the 26 other mass shootings that year. Still, in 2013, we talked about guns, and we talked about mental health, and some of us even hoped we would do something. Representative Tim Murphy introduced a comprehensive mental health reform bill, the “Helping Families in Mental Health Crisis Act.” Despite broad-based bipartisan support, the legislation died in committee this year.)

In 2014, we heard about police shootings (many of those killed had mental illness). And we heard a lot about Ebola. As of December 22, the World Health Organization reported 7,518 deaths in West Africa from the virulent hemorrhagic fever. The World Health Organization reports that suicide deaths globally are more than 100 times more common, with more than 800,000 people dying by suicide each year. In fact, suicide is the second leading cause of death after accidents for people ages 15-29.  

(Aside: We talked about suicide in 2014 too, first in February when Phillip Seymour Hoffman died of an overdose at the age of 46, then with beloved comedian Robin Williams’s tragic death in August. But neither story made the top ten cut, nor did the fact that James Holmes, who is known to have schizophrenia, is facing a death penalty trial, while Scott Panetti, who also has well documented schizophrenia narrowly avoided death at the hands of the State of Texas.)

Which brings me to Christmas.

Forgive me for asking, but sometimes I wonder, when I look at the mess this world has become: what would Jesus do? Yes, that Jesus, the “reason for the season,” the baby god born in poverty, raised in a climate of oppression and social injustice?

Jesus would demand change. Jesus would tell us to love each other. Jesus would die for his truth.

Meanwhile, we buy presents—so many presents!—and bake cookies and sing “Have a Holly Jolly Christmas.” 

We are comfortable with the baby Jesus, lying serenely in his manger while angels watch over him.

We are less comfortable with Jesus in the synagogue, speaking truth to power. Or Jesus on the cross, dying to save people who just don't want to be saved.

I think that if Jesus could choose his own carols, he would prefer Pete Seeger’s call to action: “It’s the hammer of justice! It’s the bell of freedom! It’s the song about love between my brothers and my sisters all over this land.”

Maybe we need some new Christmas carols in 2015.