Without Us

Treatment before tragedy. Photo by Daniel Battiston, freeimages.com

Why are some mental health advocacy groups opposed to critical healthcare reform for serious mental illness?

Early Saturday morning, I woke up to the news of another mass shooting, this time in a pleasant Santa Barbara neighborhood. Details were still sketchy at that point—the shooter was young, white. and male. I turned off my computer, packed my kids and our camping gear in the car, and headed for the hills, out of cell phone range.

Like so many other mothers of children who have mental illness, I knew how the story would go. His parents would have sought treatment. He would have had encounters with law enforcement. Probably he was bullied as a child. He played violent video games. And now, he—and six other young people, all of them with promising futures—were dead.

When we returned this afternoon, sunburned and covered in sand from playing all morning on the dunes, a few new details of the story surprised me: the connection to Hollywood, the misogynistic YouTube rant (see Laurie Penny’s analysis here), the Fox News allegations that Elliott Rodger was gay (???). But Fox News aside, the media seemed to be paying far less attention to the tragedy than they were to NASCAR.

It seems as if after Newtown, we just gave up. We decided that this is the kind of society we are going to live in—a society that has too many guns, and a society that chooses to ignore people with mental illness and their families, at great cost (see Liz Szabo’s timely piece in USA Today).

Part of the problem is that just as gun control opponents and gun control advocates can’t agree on even common-sense things like background checks, the mental health community can’t come to a consensus about how best to fund—and treat—mental illness. As I’ve shared before, my son has a serious mental illness. For him, and for my family, medical treatment has restored a sense of normalcy to our lives. But not everyone thinks the medical model is best for treating mental illness.

Right now, there are two competing bills in Congress. HR 3717, the “Helping Families in Mental Health Crisis Act” proposed by Rep. Tim Murphy, promises hope to families and children like mine. The other, the “Strengthening Mental Health in Our Communities Act” proposed by Tucson shooting survivor Rep. Ron Barber, maintains the status quo, a broken and fragmented system that requires patients to be well enough to seek their own care and promotes a focus on behavior and prevention, two concepts that don’t apply to people who have organic brain diseases, people who are too often “treated” in prison or ignored on the streets.

What I want—and what Elliot Rodger’s parents no doubt wanted—is “treatment before tragedy.”

Last week I attended a webinar sponsored by SAMHSA-funded mental health advocacy groups who are opposed to HR 3717. As the mother of a child who has a serious mental illness, I’m a supporter of Rep. Murphy’s bill. But since I also volunteer for and donate to organizations that get grants from SAMHSA, I wanted to understand the other side.

The phrase “Nothing about us without us” was used 30 times in the course of the hour-long webinar. This dictum establishes the common sense model of including people with mental illness in crafting legislation that would affect their lives. It’s a good idea, and that’s exactly what Representative Murphy did over the course of his year-long post-Newtown investigation into the myriad problems that continue to plague our mental healthcare delivery model. You can read the final report here. 

But at the end of the webinar, I was left wondering who these probably well-meaning and sincere advocates meant by “us.” Because I don’t think they are talking about me or my son, or hundreds of other families I know.

“When young men rage and scare their families, where are they supposed to go?” a friend who was also on the webinar and whose adult daughter suffers from bipolar asked me. “I feel like I have to beg my government not to imprison my child or leave her on the street to get prostituted out or taken advantage of by druggies. All while they spend money in the name of the illness she suffers from.”

The problem is that many of the sickest among us do not know that they need help. And even if they—or their families—realize they do need help, as Creigh and Gus Deeds did, too often there are no resources available. That’s why anything less than HR3717, the comprehensive transformation of our broken mental health care system proposed by Rep. Tim Murphy and backed by 86 bipartisan legislators, is so critical.

My son has never gone to an acute care psychiatric hospital willingly; in fact, it usually takes 2-3 police officers and a tranquilizer to get him into care. I can’t do it on my own. But at least he’s still a minor, so I can make sure he gets the help he needs—if we are lucky and beds are available.

And at least when he’s not in a manic rage, he’s aware of his illness and wants to take his medications.

What happens when he turns 19? What happens if he decides not to take lithium anymore?

The alternate bill proposed by Rep. Barber fails to address this all-important question, and many others that will haunt the investigation of this most recent mass shooting.

According to Susan Mosychuk, Rep. Murphy’s chief of staff, the bill introduced by Rep. Barber 

denies inpatient and outpatient treatment options to those who are experiencing an acute mental health crisis. It denies families the opportunity to be part of the care team and help their loved ones with serious mental illness. And it denies the reality that the lead federal agency, the Substance Abuse and Mental Health Services Administration, has failed in its mission. It’s almost as if the Barber bill wants to deny that people with severe and persistent mental illness exist. Denial doesn't work for substance abuse, and denial won't work for the families whose loved ones are in a mental health crisis.

Allen Frances, the author of Saving Normal, articulated the problem beautifully: “This is the cruel paradox haunting our mental health non-system: we deliver way too much care to basically normal people who don't need it, while providing way too little care to the really sick people who desperately do.” 

So why are some mental health advocacy groups opposed to Rep. Murphy’s bipartisan-backed legislation?

In the webinar I attended, they gave three reasons: that the medical model of mental illness would prevent people from seeking mental healthcare services, that requiring accountability and restructuring SAMHSA would eliminate or curtail innovation in mental healthcare, and that HR 3717 discriminates against people with serious mental illness by forcing treatment through its Assisted Outpatient Treatment provisions. While civil rights are undeniably a concern for those with mental illness, forced treatment and loss of civil rights already occurs when we choose to treat them in prisons rather than in hospitals.

Though this conclusion disturbs me, I think the real opposition to HR 3717 comes down to money. Organizations are afraid of change, and they are afraid of losing their funding. But as the most recent tragedy so clearly demonstrated, we can’t keep doing things the same way and expect our outcomes to be better. Those of us who have serious mental illness deserve a chance at hope and health. We deserve, as my son does, to have a life worth living—and to live that life. Please don’t support proposed legislation that is written without us, the parents who love our children and want treatment before the next tragedy.

Bag that Mountain!

When pride goes before fall

I like to climb mountains. And at the base of all my alpine hikes is a single goal: to stand on the summit, muscles singing, lungs burning, head spinning with lack of oxygen, and survey the landscape from the highest point like a god assaying her creation. If I carried a flag with me, I would plant one at the top and make a little speech in my own honor. So when I work really hard to bag a mountain and find myself thwarted just 50 feet from my goal, I am, to say the least, nonplussed.

But there are all kinds of summits.

A few weeks ago, I climbed Timpanogos, a popular scenic day hike in the Wasatch range, with my 13-year old son. He was fine on the way up, but as we began to descend, the unfortunate effects of attitude sickness began to plague him. “I can’t go any further, Mom,” he gasped at Emerald Lake, more than 3,000 feet above the parking lot we had to reach before sundown.

I stared at him, puzzled. “Can’t go any further” wasn’t actually one of the choices on the menu. We had climbed the mountain—ascended past the tree line, hiked through verdant alpine meadows, traversed rock fields strewn with granite boulders, inched along the narrow switchbacks carved into the nearly sheer rock face to reach the summit. No one was coming to save us. We had to get down—altitude sickness or not. I let him rest, urged him to drink water…and we hiked.

He survived, just like I did when I had to hike down from the top of Mount Whitney with a torn calf muscle. Of course, I hiked up Mount Whitney with a torn calf muscle as well—which tells you everything you need to know about my relationship with my mother. I tore the muscle on the very first step of the hike. Admittedly, I was showing off when I injured myself—testing my new hiking shoes’ Vibram rubber soles without warming up first. As I sprinted up a nearly vertical granite boulder, I felt the pop, then the agonizing flood of pain, and I knew.

“I can’t hike, Mom,” I told my 64-year old mother when I made it down.

“But we have permits,” my mother replied. That settled the matter. I hiked 22 miles on a calf muscle roughly the size and color of a county fair-prize winning eggplant—then didn’t walk again for four months. (In case you are wondering, I credit the liberal topical application of cayenne pepper mixed with mudwort, coupled with the fact that climbing typically relies on the quadriceps—for my physical ability to make the hike. And yes, it hurt worse than natural childbirth).

On my first backpacking trip to the Sawtooth National Wilderness in Idaho, I found myself in a similar predicament. And when faced with the opportunity to make a decision that could adversely affect my life and the lives of my four children, this time, I made the right choice. I chose not to climb the last 50 feet of a mountain. It was a whole new kind of hurt—and it opened up vistas of possibility hinting at a new kind of freedom.

At 10,190 feet, Mount Regan is not the highest mountain in Idaho—or even in the Sawtooths—but it presents a challenge worthy of the most experienced climbers. My hiking buddy Nate and I braved seemingly sheer metamorphic cliffs to reach the point of no return—a rope anchored into the side of the mountain at the edge of a 25-30 foot deep crevasse that separated us from our summit goal. We had unwisely chosen the North Ridge route; at a 5.3 rating, we would need ropes and other equipment to access those last 50 feet(according the Yosemite Decimal System for rating hikes, a 5 or higher is described as “technical free climbing involving rope, belaying, and other protection hardware for safety. Un-roped falls can result in severe injury or death”). And you don’t even want to know what the previous 50 feet were like. Let’s just say that death was definitely an option on the menu.

Nate was all ready to make the jump (We had left one more sensible member of our party behind on safer ground). I am not going to even pretend I wasn’t tempted—a sudden picture of Jesus standing on a mountain top with Satan, surveying the world, flashed through my mind. But my confidence factor was a mere 25%--in other words, I was only 25% sure that I could cross the space beneath me and cling to the other side. Nate started playing with his rope, putting a few “Man vs. Wild” moves into practice as he swung the teal nylon cord across the abyss, catching it on the opposite side. I had already made my decision when I said to him, with utter calmness, “Crossing that crevasse is a selfish act. If you want to do it, I will stand here and take your picture when or if you reach the summit. But it’s selfish. And I will not follow you.”

I was speaking to myself. But Nate heard me. For several minutes. he thought about what I said, and in the end, he too decided not to cross. I knew exactly how courageous that decision was.

“Why do we do this to ourselves, Mom?” my son had asked a few weeks before, as he moved with aching slowness down the back face of Timpanogos.

Why do we climb mountains? I think there are two reasons. We climb because we want to push ourselves to the limits of our physical endurance; we want to see just how far these sacks of skin and bone can take us. And we climb because there simply isn’t any other way to experience what we feel when we stand on the summit, feeling for a brief moment what the gods feel. No photograph, no mere description, can do it justice—that sense of absolute awe and wonder and pure freedom that assaults your every sense when you are quite literally on top of your world.

Why then do we choose not to summit a mountain? That question is more difficult for me. We choose because when we reach the moment of decision, we find ourselves insufficiently aware, informed, prepared. We choose not to succeed at some things because the risks outweigh the benefits. To give up something that you value greatly for those you love is to know the meaning of sacrifice in the Biblical sense. As I turned back from Mr. Regan’s taunting summit, as I wedged my body between sheer rock faces with vertical drops of more than 30 feet, as I scavenged for handholds in flaking granite, I thought of Abraham, knife poised above the body of his innocent son. Why does God give us these urges, then tell us not to act on them?

Every major religion on earth eschews desire, in all its forms. If I can free myself of the desire to conquer this mountain, if I can surrender my will to God’s, only then can I discover what it means to be truly free. I will not attain the summit that I seek in this life, constrained as I am by the limits of human desire, by the fallibility that pits my hubris against God’s will. But I can try. Faith can move mountains. It can also move climbers to abandon unworthy summits and seek new heights. And as I learned on Mt. Regan, to give up your pride might be the greatest sacrifice of all.

Next time I go up there, I’ll have rope, rappelling equipment, and a flag.