If the diagnosis was cancer instead of a mental illness:

No one would tell me I could control my child’s symptoms with harsh discipline.

People wouldn’t say I’m “making” him sick because I somehow, perversely, need that.

There would be enough doctors to meet his needs.*

We would never wait weeks or months for life-saving therapies.

People would not tell me that I’m lucky because my child doesn’t have some other, equally life-threatening illness.

No one would deny that my child’s illness exists.

If my child required emergency hospitalization, he would not be turned away because of a bed shortage.

I would be allowed to give my child food and drinks (if medically safe to do so) while we waited in the ER.

If my child was hospitalized, he would never be locked up, alone because of his symptoms.

While in the hospital, I would be welcome (and even expected) to stay with him all the time, even overnight.

People would not tell me that my failures as a parent were the cause of my child’s illness.

I would be treated with sympathy instead of judgment.

My child would be treated with sympathy instead of judgment.

People would not question my motives for seeking treatment. They would accept that I want to keep my child alive.

I would not have to search carefully for a pharmacist who would dispense life-saving medications without making suspicious faces and doubtful comments about their necessity.

People would accept that, while my child’s medication regimen carries significant risks, the risks of the illness are even worse.

Drug manufacturers would have done research on my child’s medication in pediatric populations so that the doctor and I have the information we need to minimize risks.

If my child was symptomatic during school, he would not be punished for those symptoms or told to stop it right this minute!

If other children made jokes about my son’s symptoms, their parents would tell them to stop.

Other parents would not make jokes about my child’s illness.

No one would insist that television/movies/video games caused my child’s illness.

My child would go to the hospital that has fresh paint, adequate equipment, and up-to-date playrooms.**

No one would say the name of my child’s illness while making air-quotes.

No one would insist that my child needs an exorcism.

People would not scoff at the possibility that my child could die of his illness.

*Not true everywhere, but I don’t know of a single community in the US that isn’t experiencing a shortage a psychiatrists, and especially pediatric psychiatrists. 

**Again, not true everywhere, I know, but here, the “regular” hospitals are bright and cheery while the psychiatric hospitals are ugly and depressing and the staff must become masters of making-do with inadequate everything.

“I can’t take her home like this!” I said. “She’s in too much pain, and she can’t walk! Can she at least have some medicine for the pain?”

The Bone Health Specialist was aghast. “A doctor can’t prescribe medicine without seeing the patient. That would be unethical!”

I brought Abbie home and made her as comfortable as I could before I got on the phone. I called every orthopedist whose number I could find. Many of them didn’t return my calls, and of those that did, more than half told me that they were not accepting new patients, and the few who I spoke to who were accepting new patients made appointments 4-6 weeks in the future or put her on waiting lists that were months long.

*          *          *

Oh, wait, no, sorry. I got a little confused for a second there. Actually, I took Abbie to the ER for an asthma attack. She was terrified, begging me to help her breathe, so I took her in hopes of getting her some relief and making sure she didn’t die. We went there, and we waited for 6 hours, and finally a Breathing Specialist came and told us we should go home and make an appointment to see a pulmonologist.

“I can’t take her home like this!” I said. “She can barely breathe, and she could die! Can she at least have a nebulizer treatment?”

The Breathing the Air Specialist was aghast. “A doctor can’t prescribe medicine without seeing the patient. That would be unethical!”

I brought Abbie home and gave her every kind of over-the-counter medicine I could think of to help her breathe better before I got on the phone……

*          *          *

Oops, no, wait, it was diabetic shock, and after we waited we saw a Blood Sugar and Insulin Specialist who told us to go home and make an appointment with an endocrinologist……

*          *          *

Gosh, sorry, I just don’t know where my head is. I took her to the ER because she was in a car accident and she was unconscious from head trauma, and after we waited we saw a Consciousness Restoration Specialist who told us to go home and make an appointment with a trauma surgeon……

*          *          *

Or wait, no, I did take my daughter to the ER, and we did wait for hours, but what was really wrong was depression. She felt suicidal. I had already called more than 30 psychiatrists by the time we went, and had already discovered that I could not get her an appointment in a reasonable amount of time. 6 weeks, 2 months, 3 months, we’ll add you to the waiting list…and in the meantime my daughter begged, “Please, Mom, can’t you make it stop? I just want it to stop!”

It is always awful to witness one’s own child suffering. From a baby’s first cold, there are few things in life that feel worse. Part of the way I endured excruciating pain after a surgery in 2007 (a stitch had slipped and I was bleeding internally) was to chant over and over to myself, better me than one of my kids, better me than one of my kids. But when there is treatment for what ails that child; when we know exactly what would bring some relief but we cannot deliver it despite our best and biggest efforts, there is an extraordinary anger that could change the path the moon travels in the sky if only I could figure out where to point it.

I took Abbie to Kaseman Presbyterian in Albuquerque because it is one of two hospitals in the city that has a psychiatric emergency department. I took her to the ER because, as I have been busy trying to get her an appointment with a psychiatrist, she has gotten more depressed. When left untreated, illnesses more serious than common viruses have a tendency to get worse. Untreated diabetes causes organ damage (or death); untreated asthma causes scarring in the lungs (or death); untreated depression causes more acute depression (or death).

We waited some 6 hours at the ER and finally we saw a Behavioral Health Specialist (BHS). She interviewed Abbie, and then she spoke to me. “She’s clearly very depressed,” said the BHS, “but she doesn’t meet the criteria for admission. She has some suicidal ideas, and she knows what she would do if she decided to end her life, but she hasn’t definitely decided to do it. Criteria for admission is an immediate suicide plan or extreme psychosis. You should take her home and make an appointment with a psychiatrist.”

“Won’t she see a psychiatrist today?” I asked.

“No, there are no psychiatrists in the emergency department.”

There are no psychiatrists in the psychiatric emergency department.

There are NO psychiatrists in the PSYCHIATRIC EMERGENCY DEPARTMENT.

“I can’t take her home without a prescription or an appointment or something,” I said.

The BHS looked horrified. “She can’t have a prescription. No doctor will write a prescription without seeing the patient. That would be unethical!”

Unethical.

Let’s talk about ethics.

Let’s talk about the ethics of insurance companies that reimburse so little for mental health treatment that hospitals have no incentive to keep their psychiatric units open.

Let’s talk about the ethics of a mental health funding system that pays psychiatrists less than most other doctors so medical students enter other specialties in hopes of paying off their student loans before they reach retirement age.

Let’s talk about the ethics of having a psychiatric emergency room with no psychiatrists in it, ever.

Let’s talk about the ethics of naming psychiatric care “behavioral health care,” as if the issues were in one’s actions instead of in one’s brain.

What about my ethics? How ethical is it for me, as a parent, not to get my daughter the medical care she needs? It doesn’t feel quite ethical to go to sleep at night, posing as it does the risk that she may hurt herself when I am unavailable to supervise. No, that doesn’t feel ethically sound at all.

When Abbie dislocated her knee at school 18 months ago, an ambulance transported her from there to the ER. At the ER, they put her knee in place, put a brace on her, gave her a dose of pain medicine and a prescription for pain medicine to take at home, and we walked out with a follow-up appointment with an orthopedist for the very next day.

There is no equivalent care for a dislocated mind. There is no method to deliver care immediately to a person who is suffering deeply but who has not quite gotten to the place where she seals the garage, or swallows the pills, or puts a blade to a vital artery.

By all means, let’s talk about ethics. Let’s talk about the ethics of a mental health care system that meets the needs of such a small minority of suffering people that suicide is the third leading cause of death among teens and young adults in the US, in spite of the fact that most people with mental illness can be successfully treated with appropriate care, and 90% of people who complete suicide have a diagnosable mental illness at the time of their deaths.

I sure am glad the doctor who “treated” my daughter the other night got to protect his ethics. Now how about we get busy protecting people’s lives? How about we talk about systemic ethics? How about we talk about treating suffering that originates in the brain the same way we treat suffering that originates in the heart, the liver, and the bones?

How about someone out there with a prescription pad helps me keep my daughter alive? How about we all start treating this like the emergency that it is?

My daughter will get the treatment she needs. I found someone to see her in two weeks (still an outrageous amount of time, but we’ll manage), and in the meantime we’ll do what we have to do to keep her safe, somehow.

The same cannot be said of the nearly 40,000 Americans who will end their own lives this year.

There are no disposable people, but we sure as hell act as if there are.

I have tried to answer every one, but I got a little lost somewhere among Facebook, Twitter, blog comments, and email, not to mention the comments on the show’s website, FB page, and Twitter feeds, but I’m answering all the people who write, think, and say, “I shouldn’t feel this way!” with the following commandment:

Give yourself a break.

There is no way that any of us should or should not feel. We get enough judgmental crap from family, friends, and that guy in line at the post office. We don’t need to do it to ourselves. Let’s start with some truth: having a child with a serious illness sucks. It sucks giant, hairy, unwashed monkey ass. Yes, there are blessings. Yes, some of the consequences are lovely.

Whatever.

We will see the blessings and the loveliness when we are good and ready and not one instant sooner. Do you know to whom we owe a sunshiny, rosy view of things?

Not one person, anywhere, ever.

Here’s the thing: the first step to learning to live with all those painful feelings is to stop condemning ourselves for having them.

Feelings are not like actions. Our actions are up for debate. If I punch someone in the nose, or drop my drawers in the middle of a restaurant, or drive my car too fast, or starve my kids, people (perhaps represented by law enforcement) have every right to say hey, cut it out! That’s not OK. We don’t accept your behavior.

Feelings, though, belong to the feeler, and they are never good or bad, right or wrong. Some of them are wonderful to experience and some of them are like being ground to bits, but they are morally neutral.

When Carter was a baby, I was consumed with guilt over the fact that I had enjoyed my other babies so much more. I believed that I loved my other children more than I loved Carter. Dozens of people have written to me in the past few days expressing similar anguish over loving other children more than their ill children, or not loving their ill children as much as they believe they should. We wring our hands and ask over and over, “Do I love him/her enough? How can I love one more than the other? Am I not supposed to love my child unconditionally? I must love this one as much/enough/more! I must! I am a failure as a parent and a human!”

Could someone please show me the cosmic measuring stick of love?

There is no love measurement. Remember where we started: having a child with a serious illness sucks. Here’s another truth: having a child with a serious illness that causes that child to act mean/vicious/violent/cruel/aggressive, or prevents us from taking care of our own basic needs (sleep, cleanliness, food, exercise, socialization) sucks ultra-triple-super-extreme.

Another truth: when someone is being mean/vicious/violent/cruel/aggressive to one or more of our children, we will have a protective reaction, even if the person being mean/vicious/violent/cruel/aggressive is another of our own children. That makes those feelings of love and kindness really difficult, if not temporarily impossible.

When we are restraining children who hiss and spit and bite like angry cats, and our hearts are thundering like trains and we ball up our fists and press them tight so we do not punch and we clench our teeth so that we do not bite, that is love. It doesn’t feel like love. It feels like raging helplessness. Nevertheless, that’s love (with teeth), and it’s the same love we feel when we enjoy ice cream sundaes with smiling children who tell adorably bad jokes.

Love is only sometimes about warm, happy feelings. Every parent learns this lesson eventually (by puberty at the latest), but we must learn it earlier, faster, deeper, and more violently.

Another truth: humans have emotional limits. If you’ve ever watched someone near the end of a long race hit the wall, you know the human body can come to the end of its endurance. What most people don’t know is that we can hit an emotional wall, too. None of us has a bottomless well of compassion, empathy, and kindness to share. Not even parents. Not even the mothers of special needs children, who, in spite of popular myths about saintliness, great strength, and an abundance of patience, are utterly ordinary.

It is a misery to have conflicted feelings about our own children, to be plagued with regret for birthing or adopting them, guilt for our shortcomings in parenting them, and fear for the ways they will continue to change our and our other children’s lives.

Self-flagellation is not the cure for that misery. I promise you, with all the confidence of 19+ years of parenting and more practice in brutal remorse than anyone I know, that there is no problem so great that self-flagellation cannot make it worse.

The outrageous and surprising irony is that, once I gave up on trying to see the bright side and looking for the silver lining and other assorted nonsense and admitted to myself that having a kid with serious mental illness sucks, and I hate it, and I would trade it in red-hot instant? That’s when I started to come to some kind of tentative peace with the whole mess.

And it’s a mess. Oh, yes, no mistake, we are not on some alternate-but-just-as-lovely-in-its-own-way life path over here.

Do you know who needs me to see Carter’s illness and the fallout it has created in our lives as an alternate-but-just-as-lovely-in-its-own-way life path? A whole lot of people who don’t matter; people who don’t get it; but the fact is, I can love Carter wholly and completely and also feel bitterly angry at what his illness has brought into my life and my family.

The more fully I accept that anger, the more often I feel the love.

What happened to Carter is flat lousy. I don’t help myself or anyone else when I pretend otherwise. I say again:

Give yourself a break.

What you feel is what you feel. It’s all OK.

All that said, sometimes our feelings get the best of us and we do things that are destructive and hurt us, our children, or others. If you need help or support, please ask. (All these resources are in the US.)

If you have hurt or are afraid you may hurt your children, contact the Childhelp National Child Abuse Hotline at 800-4-A-CHILD.

If you are concerned about your own or a loved one’s alcohol or drug use, call the National Council on Alcoholism and Drug Dependence at 800-622-2255.

If you are suicidal or feel like you might hurt yourself, call the National Suicide Prevention Lifeline at 800-273-8255.

If you feel that your health and safety, or that of your child (or anyone else), is in danger, or that you or your child (or anyone else) may hurt someone, call 911 or go to the nearest emergency room.

If you want to talk to other parents who are raising children who have special needs and you’re on Facebook, send a join request here.

After I was diagnosed I saw a psychiatrist, Dr A, for about a year. This was back in the olden days when psychiatrists did therapy, so in addition to handing me a monthly slip of paper that I exchanged at the pharmacy for a tiny bottle of green and white pills (Prozac was the only SSRI on the market at that time), Dr A and I therapized together.

Most of our therapy hours were a total wash because Dr A was a big fan of sports metaphors and I am allergic to games played in groups. He constantly exhorted me to “do an end run around” whatever problem I was experiencing, the meaning of which was a mystery to me until the invention of Google many years later.

Our time together was not entirely neutral, though. Once, when I wailed about my desire to just be happy, Dr A informed me that no one is really happy, and the best most people can hope for is occasional contentment. True happiness, he said, is mostly a myth, except for special occasions like one’s wedding day or winning a game, which left me out of the running for happiness entirely since I had no boyfriend and played no games.

Dr A wasn’t a bad guy, but he definitely missed his calling. I’m sure he would have been an excellent orthopedist or podiatrist, but as a person whose job was to help people find a way to be their best selves, he pretty much sucked.

Well, except for those green and white pills. They kept me hobbling along in a state something short of suicidal until Zoloft (which worked much better for me and which I took for over 15 years) came onto the market, so for that, I am grateful.

What Dr A didn’t know was that, while I suffered from many wrong-headed thoughts and ideas, over-high expectations were not among them. In fact, the most destructive belief I have been carrying around during my time here on planet earth is the one that says I’m no good, not worthy, incapable (yes, that’s all one idea, but there’s no word that grabs it all at once). My parents both came to parenthood with the belief that self-confidence was ugly and to believe oneself to be special was a sin (ideas they learned from their own parents), so instead of appropriate humility (I am special, and you are special, and each of us has something extraordinary to offer and receive from the other.), I learned to hide. I learned to hate myself, and I learned to believe that I deserved no better than whatever came my way by chance or accident.

Dr A didn’t do a thing to disabuse me of those beliefs, which seems to me now a tragic lost opportunity, but shit happens, and Dr A was just a guy who went to medical school and then did his residency in psychiatry. He didn’t know that when I said “happy,” I didn’t mean I wanted a life of nonstop orgasms. I just wanted to feel like I belonged in my own life. I wanted to feel needed and wanted by the people I loved. Most of all, I wanted the inside of my head to be a less dangerous place.

I haven’t seen Dr A in something like 23 years now, but if I remembered his name I would write him a letter and tell him he was wrong, and I hope he has discovered the truth: happiness is a real thing, and ordinary people can experience it.

Which, can I just tell you? This is not something I ever expected to say. Ever. To be clear: major depressive episodes aside, I have not generally been a miserable person, and I have heard the tempting call of bitterness and resisted. I’ve been content for decent stretches of time. What I haven’t been until this past year (and definitely not the whole year; it seems to me that this is something that actually takes practice) is happy.

I meet none of the qualifications that I would expect a happy person to meet. I’m not rich (in fact, paying the bills is often a challenge) nor do I have a successful career. I’m not thin, my house is a mess, my sister and I don’t speak, and one of the dogs chewed a hole in the couch. Life isn’t easy. Carter is stable but he remains (will always remain) seriously ill. My trichotillomania hasn’t improved, I continue to grieve for the years I lost with my two eldest children, and I still miss Jacob with a breathtaking intensity that leads me to drag his baby blanket out of the cupboard in the middle of the night and hold it under my chin while I cry.

And yet, in the midst of it all, this happiness. When I started to feel happy a year ago, I was sure it was nothing but a product of Abbie’s return and that it would dissipate like thunderclouds when the excitement of her return passed, but no. It has remained.

How cliché, to say that when I wake in the morning I am eager for the day, but it’s true. All of it, everything, is more vivid. The books I read are better, time with Brian is more joyful, hours at a table with friends absorb me completely. The music and the sky and the feel of a freshly made bed are all much muchier. They have regained their muchness. At church, in groups, and during meetings, I am more present. When people I care about suffer, I experience their pain with them (which is apparently a part of happiness; who knew?) and feel deep sympathy. The love I feel for my kids is more open. The concerns I have for them cripple me a little less and when I pray for them I open my hands both figuratively and literally. God is God of all, my kids included.

What I know now is this: happiness is not an accident, but neither is it a goal toward which I may work because I am so confused about what will make me happy. It is nothing like the happiness we see on TV that comes from big houses and children who go to Ivy League colleges and beautiful dresses that drape gracefully over slender hips. For me, it is some mysterious combination of praying, serving, loving people, and creativity. Oh, and the right drugs; don’t forget about those, though don’t overestimate them, either. It’s a rearranging of priorities and the release of some expectations that prevented me from laughing as long and as often as I need to. Happiness is somewhere inside the act of showing up and to hell with doing it with style or finesse (no points for those, anyhow).

It is not, as I had long expected, the product of ignoring injustice in the world, or becoming immune to it. Happiness does not preclude advocacy. It doesn’t come from being very, very good (clean! on time! frugal! organized! efficient!), or from external success or approval. I think maybe happiness has a great deal to do with letting my freak flag fly. God made me this person, the girl I was and the woman I am. If God wanted me to be some other person, God would have made me another person. So simple, and so very difficult. 

There is so much more, a thousand more fears to surrender, relationships to heal, and anger to repent. There is a mountain of shame to…what? I have no idea yet what one does with that toxic stuff, though I am sometimes able to see it for what it is, rather than simply accepting its definition of me.

But now I know this: I get to be happy in the meantime. I don’t have to wait for all the anger, shame, fear, and heartache to go away to be happy because I can be happy today. Not nonstop-orgasm happy, not nothing-ever-hurts happy, not everything-is-perfect-forever happy, but I-belong-in-my-life happy.

I’ll take it.

Hey, did you hear? I’m going to be on The Ricki Lake Show. For real! The Ricki Lake Show: Inside Childhood Mental Illness (if you click on that link, you can watch the promo) will air on Wednesday, February 6, 2013. Check your local listings or use the “where to watch” link at The Ricki Lake Show page to find out what time and channel it’s on in your area.

If you missed that post, allow me to sum up: Pickles is seriously mentally ill. She has multiple diagnoses, but the primary one is early-onset schizoaffective disorder, which has all the thought issues of schizophrenia combined with all the mood problems of bipolar in one developing brain. It is exactly as devastating as it sounds, but Pickles’s insurance company decided, unilaterally and against medical advice, that Pickles would be discharged with virtually no notice and with no aftercare provisions in place.

Except that it wasn’t exactly the insurance company that made that decision. It was ValueOptions^®, a company that insurance companies and states contract to manage their mental and behavioral health care services. From ValueOptions^® website:

ValueOptions is a health improvement company that serves more than 32 million individuals. On behalf of employers, health plans and government agencies, we manage innovative programs and solutions that directly address the challenges our health care system faces today. A national leader in the fields of mental and emotional wellbeing, recovery and resilience, employee assistance, and wellness, ValueOptions helps people make the difficult life changes needed to be healthier and more productive. With offices nationwide and a network of more than 130,000 provider locations, ValueOptions helps people take important steps in the right direction.

I don’t know what part of that statement includes removing an extremely ill child from necessary inpatient care when her safety is at stake. After I wrote my post, Kirsten’s and my mutual friend Chrisa Hickey of The Mindstorm started linking that post on ValueOptions^® Facebook page several times every week in an attempt to provoke a response. Finally, after a month, she got a message from Tom Warburton, Vice President of Corporate Communications at ValueOptions^®. You can read the entire letter and Chrisa’s response in Chrisa’s blog post Value Options Is Neither—An Open Letter to Tom Warburton, Vice President of Corporate Communications, Value Options, Inc.

The letter reads like nothing so much as a pat on the head. Warburton says, “I believe your persistence comes from a place of compassion for a story you read online… [and] now more than ever we should link arms to help move the agenda forward for mental illness,” as if this is an issue of an over-caring little woman with an over-identification problem. I snorted coffee when I read that because even if we didn’t all know each other (and indeed, depend on one another for the support that keeps us alive, parenting, and advocating day after day), nothing about this is even remotely Kumbaya for any of us. We are not in this for the glitter rainbows and little pink teddy bears, or whatever the hell Warburton is thinking. We are in this because our children’s lives depend on it.

There is no hyperbole in that statement. Our children’s lives are at risk because of their illnesses and we are not going to go away and cross our fingers and hope for the best. We don’t just fight for our own children and the children we know and love, but also for the children whose parents can’t fight; for the taxpayers whose money is wasted on programs that don’t work; and for the millions of people who continue to suffer and die with untreated or under-treated mental illness. We would love to “link arms” with companies like ValueOptions^®, but a real conversation that leads to real change requires all of us to come to the table with our motives and values exposed. I strongly suspect that the motives and values of ValueOptions^® have far more to do with balance sheets than with the lives of the 32 million Americans whose mental health care is “managed” by them.

Warburton also asks, “Are you sure that you have all the facts in the case you reference?”, which I can answer with an unequivocal yes. What I wrote in A Little Girl in Danger was not hearsay; Kirsten played voicemails from ValueOptions^® employees for me, and I have been present during many of her calls with them. The question is not whether we have all the facts, but on which facts ValueOptions^® is basing its decisions. In one phone call, a ValueOptions^® representative said twice, “It’s just time for Pickles to go home,” and once, “We really feel like it’s time for her to go home.”

No, wait, let’s hit that one again: “We really feel like it’s time for her to go home.”

Feel like??? Did someone draw a card? Read some tea leaves? Have a dream? “Feeling like” a given course of action is the right one is not medical judgment, especially when that feeling comes from people who have never met or treated Pickles.

ValueOptions^®  is a private company, so their financial information is not easy to find*, but we do know a few things: the average salary of their employees is $83,000 per year. Here is a list of salaries for some of their mid-level employees, which seem pretty healthy to me for a company whose representative said, “We believe it is our job to make sure that we manage resources in the most effective manner for those that need. And as I am sure you are aware, funding for mental health treatment is dramatically underserved in both the private and public sector, so resources are scarce indeed. Our goal is to advocate for more spending – public or private – when it comes to mental health and substance abuse treatment.” It’s awfully disingenuous for a company to cry poor when their employee compensation is so generous. And remember, those are mid-level employees. Their executive leadership probably earn many times more than their average employees.

So to Warburton I say yes, absolutely. We need dramatically increased funding for mental health care in the US. On that point we agree. My concern, though, is that funding be used to treat patients, not provide ever-nicer lives to the executives of companies like ValueOptions^®. Records obtained under the Freedom of Information Act indicate that in Illinois,ValueOptions^® has been steadily and dramatically decreasing the number of children it approves for residential treatment, in spite of increasing need. Keep an eye on Chrisa’s blog for more information about that.

We have two urgent issues to deal with: first, we’re talking here about people. People with serious mental illness might be weird and scary. Some of them will never have conventionally productive or successful lives, but that does not make them disposable. They are beloved children, grandchildren, nieces, nephews, siblings, parents, spouses, and friends, full of gifts, talents, love, and the innate value of every human. They deserve every opportunity to reach their potential, and dammit, we as their parents deserve to witness them experiencing joy and the satisfactions of success.

The other issue is the money. Our taxes (and much of ValueOptions^® revenue is from taxes) are funding an outrageously top-heavy system. When I visit Pickles at her residential treatment center, I am dismayed at the cafeteria where we visit. It needs a good scrubbing, a fresh coat of paint, and new tables, but the money for cosmetic (they aren’t really cosmetic; an ugly environment is not conducive to emotional well-being) fixes is not often available. The low-level staff is constantly changing because they are overworked, underpaid, and poorly trained, a situation that is brutally difficult for the children and adolescents in their care. In facilities all over the nation, there are staff who are dedicated and caring. They want to do wonderful things for and with children who need treatment, but they do not have the resources to make that happen.

And, of course, many children who need that level of care (and other levels, from acute inpatient to day treatment to intensive therapy that encompasses many hours each week) simply don’t get it because someone in an office somewhere really feels like that child doesn’t need it.

This is no way to run a health care system. This is no way to care for the weak, the vulnerable, and the sick. I invite ValueOptions^® to come to the table for a real conversation about real problems and real solutions. Tom Warburton, we see your Kumbaya linking of arms and we raise you one deeply troubled little girl in urgent need of continued services.

*A huge thank you to Alena Chandler for her research help.

Those two things are, along with an excellent psychiatrist and a wonderful therapist, the things that stand between Carter and the nightmarish experiences of 2009 and early 2010. The relative stability we have enjoyed since then would not be possible without that money. I don’t know any kids whose illness is of the depth and severity of Carter’s who have stayed out of the hospital as long as he has.

This relative stability (I must always use the qualifier relative.) vastly improves his chances at a happy, productive adulthood, because his brain is now wiring around things like feeling capable at school; going to the grocery store and having pleasant interactions with strangers; and the myriad small successes of daily life, like helping around the house and taking good care of our family dogs. There are a thousand things that a typically-developing child of his age does that he cannot, but in 2009, there were months in a row when he couldn’t go to any store and I ran all the errands in the evenings after Brian came home from work. He couldn’t be around other children without my attentive supervision, lest someone get hurt. Our dogs spent most of their days in our sunroom for their safety. Many days, I didn’t even feel safe to take him in the car by myself and Brian had to take time off of work to ride along to appointments.

Because of my family’s investment, Carter has a chance to become literate. He may be able to hold a job someday. His odds of incarceration, long-term institutionalization, and homelessness are decreased.

Put more simply: Carter will probably be cheaper as an adult because of this investment on the front end of his life. He might not cost much more than the price of a monthly Social Security payment and Medicaid for his outpatient psychiatric care. There are no guarantees, and he may very well cost a mountain of money in the form of a prison cell or a hospital bed or the constant bookings into county jail that define the lives of thousands of people who are mentally ill, but his chance for a good life is improved. Vastly.

You know who doesn’t have all the advantages that Carter enjoys? Virtually every child in the US with serious mental illness.

Let’s start with education, with the caveat that most of the people we worked with when Carter was still in public school were knocking themselves out to provide him with what he needed to be successful. The system, though, threw up roadblocks until it was almost slapstick. High-level special education is expensive, and schools do not want to provide a level of special education that is even one tiny increment higher than what is absolutely necessary. Further, the law does not require schools to help children reach their full potential. Education law is mostly written in mushy language that leaves a great deal up to the people filling in the boxes on the forms, but the keywords are appropriate and adequate, not best or even good.

The result of all this was that Carter’s school provided more services in tiny increments, then waited for Carter to fail before adding more services. Around and around we went, with Carter required to fail. And fail. And fail. We knew what he needed. He could not function in a regular education classroom, but there was no way to leapfrog to an appropriate setting. Laws that were originally intended to keep schools from locking students with disabilities in dismal classrooms where all their talent and potential was ignored (a noble cause, to be sure), like least restrictive environment requirements gave the school the out they needed to resist providing an environment in which he could learn. The results were nearly catastrophic.

Carter screamed all the way to school, every single day, and when we arrived there, a teacher or an aide had to pry him off of me and I walked away while he shrieked for me, which would all be horrible enough, except that the terror was with him constantly. Most days, he cried and screamed during all the hours he was at school, spending good chunks of his day in the nurse’s office. If he was lucky, he would throw up, which was the only thing that inspired anyone at the school to call me. Otherwise, they would let him cry, insisting occasionally (as I heard from the hall one day) that he “Stop it right this minute! There is nothing wrong with you!”, determined to force him to deal with being at school. I would pick him up from school and within an hour, he was down with a migraine. By dinner, he would be finished with the blinding pain and the vomiting in time to start crying about his fear of school the next day. He couldn’t sleep at night because of his anxiety, and when I woke him in the morning he cried nonstop, with occasional breaks to vomit.

I recorded this audio in September, 2009 by hanging my phone from a camera strap to the back of my seat, in front of Carter. I would have edited it down to the high points for you, but I really can’t bear to work with it. You can barely hear me murmuring in the background because the phone was behind me, and the audio gets choppy a few times because Carter kicked the phone. I feel horribly guilty listening to this recording, knowing that I forced Carter to endure this level of suffering for nearly three weeks. Everyone at the school was insisting that I bring him; that he be on time; that he stay until the final bell; that he learn to handle being away from me during the day. Every instinct was screeching no no stop don’t do it but I couldn’t listen to myself.

Truth be told, there’s a secret that many of us whose kids have mental, emotional, and social problems keep: so many people tell us, in ways subtle and blatant, that our kids are just fine if only we would stop making such a fuss, that we believe it a tiny bit. Some part of me thought, in spite of all the evidence to the contrary, that Carter could be forced to be OK, that I was babying him, that he just had to learn to suck it up. This is the emotional equivalent of teaching a child to swim by dropping him into the heart of the ocean, mid-hurricane, but the notion is so prevalent, I couldn’t shut it out. I wasn’t confident enough to protect him.

At the end of the recording, you can hear Carter begin to calm down. That’s because I made a decision, as I drove, that I would take him home, and I never tried to take him back to that school again. I had no plan; we had nothing else in place, and no idea if there even was any other option for us. I just knew he couldn’t do it, so I quit my job, bought a book about homeschooling, and prayed for a solution.

All that fall and winter, I drove Carter to therapy and psychiatry appointments and played learning games with him in hopes that he wouldn’t forget too much of what little he had learned in school. My husband, Brian, missed work often after Carter tried to throw himself out the door while we were going 65 miles an hour in the inside lane of I-40 and I was afraid to drive alone with him. We slept in shifts when Carter was so severely insomniac that he slept only on alternate nights. We kept him out of the hospital by the skin of our teeth by turning door locks around so that we could lock ourselves in a stripped-down “safe” room with him and learning to do restraints. We were bruised, beaten, bitten, and battered. We tried one medicine after another (after another after anotherafteranotherafteranother) and slowly, traumatically, came to terms with the fact that Carter didn’t have just an anxiety disorder, or an unusually bad case of ADHD, or some other well-known childhood emotional malady, but something bigger.

Imagine, if you will, what might have happened had I been unable to quit my job? If I had been a single parent? If there were other issues in our family (addiction, for instance) that made Brian and I unable to care for Carter in such an intensive way? The cost of enabling me to stay home with him is small compared to the costs associated with the hospitalization that he would have required if my job had been essential to our economic survival, but if not for my family, I could not have quit.

The only thing parents of kids with mental illness rely on more than the education system is the health care system. Those of us whose kids are seriously ill can’t keep our kids alive without it, and even if we do manage to see to their survival, their quality of life is abysmal unless they receive appropriate medication and therapies. This is exactly the same for us as it is for parents whose kids have leukemia, congenital heart defects, or diabetes. The difference is, no one tells a parent whose child is in a medical crisis, “Sorry; there are no beds in the state. Take her home and give her Benadryl.”

I wish I was making that up, but I’ve heard that story from dozens of families, most recently last week. Mental illness can be fatal. People with mental illness may die or be permanently injured or maimed by their disease. But somehow, when the presenting complaint is in the brain instead of the liver or heart, we as a culture have decided that it’s OK to turn people away.

Private companies don’t have much incentive to maintain facilities for mentally ill patients. Inpatient psychiatric beds aren’t nearly as profitable as medical and surgical beds, and psychiatric patients usually don’t require the kinds of tests that bring in the big bucks for hospitals. When I was in the hospital for pancreatitis last summer, I had three CAT scans and 2 MRIs over the course of 5 days. A psychiatric patient in the same bed wouldn’t have generated nearly as much money for the hospital.

When hospitals send children away, parents are forced to absorb that deficit of care with their own efforts, doing things that no parent should have to do. I have restrained Carter as many as 3-4 hours per day while he begged me to kill him, to call the police to come kill him, or to take him to a tall building so he could throw himself off. This, in any group of parents whose children have mental illness, is a totally ordinary story. We do what we have to do because there is no one else to do it. No one asks parents of children with cancer to infuse chemotherapy at home. If there were no beds available in the entire state for a child in heart failure and the hospital sent that child home with instructions to administer Benadryl and go to bed, TV crews and outraged senators would be all over the situation in no time at all, yet it happens every day to families facing diseases of the brain and there is barely a ripple in the public consciousness.

Unless, of course, there is a mass shooting, at which point people everywhere start to ask, “Why didn’t someone do something? Why didn’t his mother/father/friends/teachers call for help? How could they just let this happen?”, and those of us deep in the mental health trenches laugh bitterly because you don’t know. You don’t understand. Maybe this or that shooter’s mother/father/friends/teachers begged and pleaded for help. Maybe someone sent them home from the hospital because there were no beds. Family members of people with mental illness ask for help, and our loved ones are placed on waiting lists. We try to prove that our children really are on the brink of killing themselves or someone else, because only under those criteria is anyone ever hospitalized in a psychiatric unit.

You know, if there are beds.

Mental illnesses are not static. They are progressive, and the longer a person with mental illness goes without adequate treatment, the sicker he or she becomes. Every time we are sent home to deal with things in the best way we can, we lose a little more of our children. They slip a little further from themselves, a little further from their potential, a little further from the families who love them. Just like a child with diabetes will get a little bit sicker and suffer a little more organ damage with every day her blood sugar is not adequately managed, a child with mental illness gets sicker without treatment, but no one would expect a diabetic child and her family to go home and wait months to see an endocrinologist. Here in New Mexico, the average wait for a pediatric psychiatrist is 4-6 months, if you live in Albuquerque. Children in rural areas wait much longer.  In the US today, there are approximately 7,500 psychiatrists who treat children and adolescents, while the need is for a number closer to 20,000.

Where are the news vans and senators now?

The right is trumpeting again about an “entitlement crisis,” insisting that we must stop wasteful spending on social programs. Here’s the problem with that: just because you cut a program doesn’t mean you’ve erased the problem the program was created to ease. We can cut right down to the bare bones, and we’ll still have to pay someone to drive the dead wagons.

If we don’t pay for treatment for people with mental illness, that doesn’t mean we won’t eventually pay for people with mental illness. The difference is, instead of paying for health care, education, housing, and other programs that meet real needs on the front end, we pay for the disastrous consequences on the back end: police, jails, prisons, and long-term institutionalization. The largest provider of mental health care services in the world is the US correctional system, and many people with serious mental illness only receive treatment for their conditions when they are incarcerated. People who could live successful lives with appropriate supports instead become homeless, end their lives, or use illicit drugs to endure the relentless and unbearable symptoms of their illnesses between stints in jail.

Almost no family has all the resources necessary to meet the needs of a person with serious mental illness so we have to do it together, with social programs. We’re are paying, and we’re paying big, but we’re spending our money on the wrong end. My insurance company resists paying for treatment that Carter needs now, but taxpayers will insist that someone pay for a prison cell if he hurts someone in the throes of a psychotic episode someday. Republicans don’t want to fund the expensive special education programs that kids like Carter require, but we sure as hell want cops to keep homeless people from hanging around the entrances to our favorite restaurants.

Almost all of us invest time and money into toothbrushes and regular dental care because we know that it’s cheaper and nicer than having rotten teeth falling out of our heads. We pay the people at Jiffy Lube to change our oil every 3,000 miles because we know it’s far less expensive than letting the engine seize. We hang smoke detectors in hour homes because we don’t want to be burned to death in the night. We have the good sense to recognize that some prevention in the beginning, even if it’s inconvenient and expensive, is almost always easier and cheaper than dealing with the disaster that will come later if we don’t.

Classrooms are cheaper than cops, trials, and prison cells. A hospital bed for a month at the beginning of a psychiatric crisis makes lots more sense than a jail cell for a year after a full psychotic break. This argument about whether or not to pay is nonsense; we are already paying, but we’re throwing our money down an immoral and inhumane suck hole. If the notions of morality and humanity don’t mean much to you, consider this: the return on our investment could be infinitely better.

We can do better than to toss some people aside like so much disposable waste. We can be better than we are now.

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Photo by Kathryn Denman

In November, 2010, I decided to take a short break from blogging and and all things internet-y to spend some time with my youngest son, Carter, during his fall break from school. That was true, but it was only half the story. Over the summer of 2010, No Points for Style had gained a respectable readership. I wasn’t playing in the big leagues by anyone’s definition, but my blog was growing and it was thrilling. I wanted (still want) nothing more than for people to read my words. Yes, I’ll cop to it: I want to be famous on the internet, and maybe even famous in the real world. That’s more complicated than it sounds, because it has more to do with wanting to be heard and needing my life to matter in some broad way than it does with fame per se, but I don’t guess I’ll figure everything out right here, right now, so, on with our story.

While watching my blog gain readers was exciting, it was also terrifying and confusing. I’m still not exactly sure why. Comments and emails about how I am poisoning Carter by giving him medicine, or how I’m ruining my relationship with my older kids by sharing stories of my marriage to their dad, or the occasional generic hate-filled diatribe peppered with misspellings and grammatical errors don’t particularly bother me.

I do know that I was paying far too much attention to the noise in the blogosphere (and social media more generally) about what was and was not OK in a blog and I pretty much tied myself in a knot over what other people might find acceptable.

Which, well, let’s back up a little bit, because this is what I do. I define myself, not based on my own preferences, talents, abilities, limitations, etc., but based on what others expect. And this is no small thing. In fact, it’s been pretty much sucking the life out of me for as long as I can remember. On meeting me for the first time, people tend to think I’m shy, but I’m just taking a few minutes to suss out who you would like me to be so I can be that person for you.

However (and this is one big-ass however), I am also an extremely passionate person with strong opinions, and I don’t just share those opinions; I deliver diatribes. In meetings, at church, at community events, in groups, I’ll be sitting on my hands thinking, “Be quiet. Just skip it this time,” but alas, I’m what you call mercurial, and before I know what I’m doing, my hand is in the air and there I go, speaking, and I have big gestures and high volume to go with the words. Put the passion and the fear together and (as my husband would be very willing to tell you), there is one sorry-ass puddle of shame-filled Adrienne to be found in the after.

Oh, Lord, The After. It can be ugly.

The After wasn’t particularly applicable to writing for a long time, in part because my audience was tiny, but more because writing gives writers as much distance from their subject matter as they choose. If a topic feels safe, I might dance right into the heart of it, and if it is dangerous I can stay safely away from the tender center.

And authenticity, integrity, blah blah blah. We analyze and dissect these ideas in the blogosphere as if they were real, achievable goals, an endpoint that some will reach and some will ignore in favor of a well-managed online identity and the product endorsements that are the supposed result of such bedazzled lives.

For the record, I always thought that was the falsest of false dichotomies. Whether we aspire to authenticity or not, we are all carefully managing our online identities with every word we share. I just had no idea how trapped I would become between the two non-existent poles.

I have never lied here in the virtual pages of No Points for Style, which is not to say that everything I’ve written has been factually accurate, but storytelling is the very definition of subjective. The truth as I have written it here belongs to me and no one else. The facts? Well, I don’t know to whom those belong. God, I guess, or maybe the past, but certainly not to me.

Even more strangulation has come in the form of replaying over and over the random bits of advice I’ve heard across the years. Be funny, said some; focus on mental health advocacy said others. Write shorter posts, from one corner; be more casual from another.

Why I even listen is beyond me because I know good and well that the only real advice I need is stop investigating your damn naval and write, you foolish woman. Some of it will suck; some will be brilliant. Most will be passable. Just fucking write.

I took that short break from blogging in the fall of 2010 and when it was over what happened was this: I found myself sitting at my keyboard, staring at the screen and thinking not about what I wanted to say, but how you would receive what I did manage to say, which is sort of like dropping a soggy wool blanket over a dancer: it stops all the art and replaces it with futile, ugly struggling. I tried several times to find my way back in, without much success.

I don’t know how one negotiates two desires that are so entirely at odds. I want to speak, and speak loudly, and be heard. I also want to hide under the bed where no one will ever have reason to call me names or fart in my general direction.

To speak and to be treated civilly is too much to ask if one is doing one’s speaking on the internet. All of us who put our hearts and minds into the public in this medium know that. If we haven’t experienced it directly, we’ve witnessed it.

If I wanted to do this blogging and writing thing with a bag on my head, I would have had to make that choice at the very beginning. I don’t think I would do it differently even if I had it to do over again. There’s nothing to do from here but shut the whole thing down, or take a leap back into the heart of the thing. I don’t know if the world needs my words or not, but I do know that I need to speak them. I am made of, for, and by words, and to be silent is to wither.

Even the knowledge of my own fallibility cannot keep me from making mistakes. Only when I fall do I get up again.
—Vincent Van Gogh

Pickles is not safe outside of a secure facility. During her time at the RTC in Denver, Pickles disappeared at about midnight and was missing until the police found her about 4 hours later on a freeway overpass. She explained to Kirsten that E (one of her hallucinations) had said they needed to go for a walk because he had something to show her.

Pickles was, at that time, seven years old. She is now 8 and is psychotic most of the time, in spite of large doses of anti-psychotic medicines, mood stabilizers, and anti-anxiety drugs. In recent weeks, she has tried to stab herself with a fork, gouged her face with a ballpoint pen, and required emergency restraint multiple times. She is not able to go on outings with her group and she has not had an overnight pass with her mom, all because she is at risk of hurting herself or someone else.

She is also funny, charming, kind, and the very prettiest little girl in the world. When we visit her at her RTC, her favorite thing to do is put tiny ponytails in my husband’s hair and put makeup on him. She loves to sing and she loves presents: getting them, giving them, and making them. When her psychosis is quiet enough to allow her to be present, she has a sharp sense of humor and a stunning awareness of herself. She is, ever so slowly, learning to live with and manage her illness.

But she’s not safe yet, and in fact, she remains a danger to herself and others. Aetna Value Options has informed Kirsten that Pickles must be discharged Thursday, December 27, 2012, because she has reached her baseline and she will never get any better. The RTC has told Kirsten that she has no option except to take Pickles home and register her in the neighborhood school.

There are no aftercare provisions in place.

No psychiatrist.

No psychologist.

No respite care.

The education specialist at the RTC told Kirsten that Pickles won’t get a specialized classroom placement until she “fails” in a regular classroom setting.

Does it not occur to the people who make these rules that repeated requirements for “failure” are devastating to Pickles’s sense of herself as a growing girl who is working and striving towards something? That every calculated “failure” strips a little more of her spirit and her confidence?

Kirsten, who knows Pickles and understands her illness the way only a mother can (and more, since she holds a PhD in neurophilosophy), knows that this abrupt discharge is doomed. Her experience tells her that Pickles will be back in acute psychiatric care within weeks, if not days, either when she becomes unsafe at home, or when she has one of the seizure-like rages that happen often when Pickles is overwhelmed, probably while she’s at school, and likely resulting in a call to the police who will deliver her to the hospital, an episode that will be profoundly traumatic not only for Pickles but for all the students and staff who witness it.

After dreadful things happen (a child is hurt, or hurts others), one of the first questions that people ask is: how could her parents have let this happen? Why didn’t they get her some help? What we don’t see is what is happening here, namely, her mother is totally dedicated to getting Pickles all the help she needs, but she is being prevented from protecting her daughter. She is also being prevented from protecting the children at her neighborhood elementary school, her own safety, her neighbors’ safety, and the resources of local emergency responders who will be called on when Pickles hurts herself or someone else.

If Pickles bolts (which she has done often), what if she is hurt before her mom, school staff, or the police can find her? If she rages, what if she hurts someone before she can be restrained? At her RTC, she requires “C-teams” (which is a technique involving two staff members who help her calm down while standing ready to restrain her), restraint, and emergency sedation on a regular basis. None of those techniques is even remotely available in a regular public school classroom or her mom’s home. What if her hallucinations tell her to hurt someone? What if she becomes so overcome with frustration at the constant battle inside her own head that she tries to take her life?

What if she succeeds?

Everyone who knows Pickles agrees: she’s not ready for discharge. Her psychiatrist, her psychologist, her mom, and Pickles herself all know that this is a terrible idea. She cannot be kept safe in a home environment. People at the insurance company (who have never met Pickles) made this decision.

Pickles is in danger. Make no mistake: this is a life-or-death situation, and this is mental health care in the US today.

I am working furiously with Kirsten to prevent Pickles’s discharge until she is ready and all appropriate aftercare accommodations are in place. She needs a slow, gradual transition with lots of opportunities to feel successful as she meets small goals along the way. And, of course, she needs to be safe, and she needs the people around her to be safe. You can help by sharing Pickles’s story. No parent whose child had acute liver or heart disease would be expected to be the sole caregiver for that child’s medical needs. Why should it be different when a child’s illness exists in her brain?

UPDATE: And it’s all good!

The office of NM Governor Susana Martinez was very responsive to Kirsten’s calls for assistance. At this point, it looks like Medicaid will be picking up where the private insurance left off, and the Children, Youth, and Families Department will be requiring their own approval when the time comes for discharge and aftercare plans. No one is relaxing entirely yet since the RTC has just submitted a new claim to Medicaid and it hasn’t been approved yet, but as soon as all the Ts are crossed and Is dotted, Pickles will again be secure at RTC until any changes, including discharge, are appropriate and safe.

Thank you thank you thank you (and dozens more thank yous) to all who offered support and love. Thank you to those who shared contact information and worked to share this story as widely as possible. Thank you to Governor Martinez, her staff, the staff of Pickles’s RTC, and NM CYFD for putting the safety and well-being of a little girl above dollars. Please continue to share this story. Kirsten and I were just discussing yesterday how differently this could have worked out, had Kirsten not known how to work the system the way she did (and I do hope I was helpful in that part) and had online friends with broad experience with advocacy not offered their advice (We didn’t end up using all the contact info we got, but wow, do I have an impressive list to call upon if and when any of my local friends should need it!). There are other parents out there, parents who don’t have much education, or don’t have much money, or have cultural or language barriers, and so many other issues that prevent them from advocating for their children in the way Kirsten does for Pickles. Kirsten is not cowed by the authority of people who say no they way many people are, and that is not a failing, just a fact of temperament. This could have gone so differently, and Pickles could have been the lead story on the local news, and the first thing a thousand people would have said from in front of their televisions is, “How could her parents have let that happen? What kind of parents are they?”

The next time you hear a story like that, and you hear people judge the parents, please remember Pickles. There are bad parents out there, sure, but there is also illness that parents alone are not equipped to manage on their own, even the best among us. Remember what might have happened here; what very likely would have happened if Kirsten was not a fierce mother with fierce and loving support behind her. Mental health care in the US must change. Pickles and Carter and all the children and adults who need care deserve sensitivity, kindness, and treatment. It doesn’t have to be this hard.

Another news story about shocking violence, another moment of stunned silence.

Another moment of stunned silence, another round of heated debate.

The violence in Sandy Hook last week is too terrible to comprehend. In the early hours of the news of the tragedy I was plagued by a near-hallucination in which I could hear the parents of the murdered children screaming. I won’t imagine what they felt, both because I cannot bear it and because their grief is a uniquely unimaginable thing, yet I can’t help imagining. My own youngest son’s cheek has never felt as warm and soft under my kiss as it did on Friday afternoon.

But…

The children of Sandy Hook were just a few of the children who died last week from guns. In the US, one child dies every three hours from a gun.

Every three hours, every single day, every week, every month. Eight children per day. Twice as many preschoolers die each year from guns as law enforcement officers die in the line of duty.

Twenty children died in Sandy Hook. Twenty times one hundred forty die every year in the US.

This problem we have in the US—the violence perpetrated in our homes, our schools, our workplaces, our malls, and hospitals—is bred and nurtured in the soil of ordinary violence.

The ordinary violence of poverty, loneliness, and invisibility, of a judgmental comment or a critical glance. Ordinary violence is victim-blaming, racism, ableism, sexism, and fear-fueled anger toward all who seem other. Them, they, those. Ordinary violence is in our language, in our unwillingness to listen and hear the experiences of people we don’t yet recognize as our friends. Ordinary violence is the mommy wars, underfunded schools, families struggling without support, and an inadequate mental healthcare system.

My husband said to me on Friday evening, “You go out and try to see a psychiatrist and I’ll go try to get a gun. We’ll see who’s successful first.” And yes. A thousand times yes, I believe that: we need more help and less firepower. There are deep systemic issues and the stark difference between the ease with which almost anyone can get a gun and the difficulties all who need it face when seeking mental health care are a potent illustration.

But there is more: there is the heat and fury with which we live our lives, the reckless way we handle each other. We live in fortresses of shame and fear. We close and lock our doors and don’t let one another come in. We don’t see each other, not really, and from that narrow, sheltered perspective, we write laws, cast votes, build communities, and create a culture that meets the needs of only a few of us. We warp our religions to justify hate. We require our people to serve our laws instead of making laws that serve people. We track violence into our homes like something stuck to our shoes, and we carry that violence with us back out into the world, where we step over those who have no homes and avoid meeting the gazes of those who have no hope.

Mass shootings make heroes of teachers in classrooms; of boyfriends in movie theaters; of store clerks at malls. We all have the potential for such heroism, and we needn’t wait for a person in body armor and bearing automatic rifles to burst into our lives for an opportunity to express it. There is no person, no group, no leader who can fix this alone. There is only us, creating the world in which we live.

What will we build?

How will we lead?

We need to do two things: first, work for systemic, institutional change around guns, mental health care, and education. Contact your representatives every way you can: call, email, snail-mail, and fax them. Insist that guns be taken seriously as the public health risk that they are and that our lawmakers make mental health parity a reality. Donate money to The Brady Campaign to Prevent Gun Violence, The National Alliance on Mental Illness, and The Children’s Defense Fund, or volunteer with those or other organizations working for change. Fund, organize, or volunteer to help with a gun buyback program in your community. Sign petitions. Meet with your representatives and tell them what change you want to see.

While we’re busy with that work, we must also meet ordinary violence with ordinary heroism. See people: the invisible, sad, lonely, hopeless people, and meet a need. Not because those people are killers-in-waiting (they most assuredly are not), but because when we do what is good and kind and decent, we create a new world. Listen to someone. Share a meal. Look up from the screen of your phone and smile. Be patient. Slow down. Accept kindness in turn.

We can do better, and we will do better, but we have to put our shoulders to this boulder and push. There is no alternative if we want to sleep at night or face our reflections in the mirror come morning. People keep telling me that there’s nothing that can be done and if that’s true, we aren’t the people I thought we were. To paraphrase Winston Churchill, we’re in hell now. Let’s not furnish it; let’s keep moving and find our way out.

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Photo attribution: By Bangin (Own work) [GFDL, CC-BY-SA-3.0 or CC-BY-2.5]