An Eternal Multitude of Despondency

Instead of letting me go in an ambulance, my parents drove all the way from Albuquerque, New Mexico to Prescott, Arizona to take me from the tiny regional medical center where I had been for nine days to the much larger hospital in Phoenix.

Instead of letting me go in an ambulance, my parents drove from Albuquerque to Prescott, Arizona to take me from the tiny regional medical center where I had been for nine days to the much larger hospital in Phoenix.

When they arrived to collect me, I was furious because I was not dead yet, and I was furious at my parents because one time they had wanted to have a baby, and that baby was me. Horrible, miserable, disappointing, useless me.

Somewhere at the back of my skull where depression had driven my better self, I could hear a murmur of words that said, ssssh, be nice. They love you. This is hard for them.

My parents drove me from the hospital to the house where I had been living and gathered my things. We filled my suitcases with the paperback novels I read until I’d gotten too sick to do anything but stare at Green Acres and Make Room for Daddy on Nick at Nite while I sharpened and re-sharpened every knife in the house. My mom put my hamper in the minivan last, telling me she’d do my laundry and bring the clothes to me at the hospital.

I was in the middle seat of our Volkswagen Vanagon while my mom drove the steep, twisting roads out of the mountains and into the pestilential heat of Phoenix. We paused for a funeral procession and I looked at the hearse and I hated its dead passenger with a hot red rage because how dare that asshole get a chance to die when I could not have mine? How could the universe force me to continue to draw breath when so many were allowed to make their escape?

Something broke behind my face, and I don’t know if it was sitting in that seat in the van where I had sat so often as a child, or if it was the presence of my parents (who on that day I hated and loved in equal degree), or if the little green and white capsules (“This drug is so new you’ll always be able to tell people you were one of the first to take it!” chirped the psychiatrist who prescribed it, as if I didn’t have every intention of dying before I ever told anyone anything ever again.) were chiseling away at the deadness in me, but I cried.

I laid down on the brown van seat and bawled. I used up all the tissues in the car, and then the roll of paper towels my parents always carry when they travel. Finally, I crawled into the back to find one of the little travel blankets my mom made when I was twelve and I cried into it and there seemed no end to the tears and snot and suffocating misery. There was no relief in those tears, no purifying release, just more: an eternal multitude of despondency.

My mom parked the car and my dad opened the sliding door. He unbuckled my seatbelt and I walked under his arm, my face covered, and he guided me until I was in a chair in an office with a woman who asked questions. I hated that woman, this intrusive, bossy crab who wanted me to answer her stupid question and sign her ridiculous papers. “I’m sorry, Mr and Mrs Jones, but she’s 18. She has to answer herself,” and she was just another prying, arrogant ass who wanted to stop me from checking the fuck out of this life.

We walked again, me still under my dad’s arm, my swollen, soggy face hidden, and there was a loud clunk and I was seated in a new chair. I cried on. My face was as hot and raw as a knee that has been skinned on pavement after a bad spill from a bicycle, and still I cried on. I leaned into my dad while someone put a tourniquet on my arm and drew blood  and someone said, “Excuse me. I need to use the phone.”

I looked up. In front of me, a blonde woman no bigger than a ten-year-old wearing jeans and a housecoat, and behind her, across the room, a mustard-yellow steel door. “We’re here? We’re already here?” I asked, panicked. I was locked in.

“You gonna move or what?” asked housecoat woman, and my mom guided me to a different chair so I wasn’t sitting in front of the row of pay phones on the wall.

“Can’t I come to the hotel with you guys?” I asked my parents. “Just for tonight. I’ll come back tomorrow. I promise! Just take me with you for one night, please? I won’t do anything. I promise. I really promise.”

My dad squeezed my hand. “We have to go now. You need to stay here but we’ll come visit tomorrow.” They each hugged me and I don’t know if I hugged them back.

That night, a nurse gave me a Benadryl to help me sleep and my insomnia snickered at that drug and I spent the night sitting in the day room with my 1:1 aide (the person charged with staring at me every minute lest I find some way to hurt myself in this bladeless, beltless, edgeless, glassless place). The aide lit my cigarettes one after another after another while I stared at the console television with its familiar succession of elderly shows on Nick at Nite. She asked me questions as if I was a child she was humoring at a friend’s party: Do you have any sisters or brothers? Do you like dogs? What was your favorite subject in school? I did not scream at her shut up shut up shutupshutupshutup and eventually she opened one of the magazines in her lap and seemed to be reading it.

The days were long, punctuated by meals we ate in the smoky day room and the counting of returned plastic cutlery after. There was a tray of graham crackers and apple juice from which we could snack between meals, and down the long main hall was a man who was either bedridden or in restraints who screamed curse words at the staff all day until evening when they gave him medicine that made him sleep and we, patients and staff alike, breathed a collective sigh of relief. On the rare occasion I was able to sleep, my roommate woke me to share the triumphant news of her successful vanquishment of ceiling demons. “They would have eaten everyone,” she told me, and I wished she would let them.

My parents drove to Prescott to pick up my car, then my dad drove home in our van while my mom stayed on in Phoenix for a few days. She brought me my clean clothes. She had gotten all the blood off the left leg of my khaki pants and I wished she’d just thrown them away but maybe she needed to scrub and scrub and scrub until it was gone. She couldn’t scrub my hand the way she’d scrubbed the pants and I poked and pulled on the wounds there but they didn’t hurt much anymore.

I was relentlessly cajoled. I was running a low fever and my blood work showed I was dehydrated so the staff brought me cup after cup of soda, tea, and water that I would not drink. They threatened that I would not be allowed off the unit if I didn’t eat but all the food tasted like sand. All the drinks felt like glass in my mouth. I sat in a chair in the day room and listened to my thoughts pummel me and I hoped I would die in my sleep and I smoked my cigarettes and when they brought that green and white pill in a tiny paper cup I swallowed it.

There was a doctor with an accent so thick I couldn’t understand more than about half of what he said. He began to give me diagnoses, one after another, stacking and shuffling them, as if hanging enough words and codes on my emotional reality would cause a spontaneous healing. “Please just give me some medicine to make me sleep,” I said.

“You already have catatonic signs and symptoms,” he said. “A sedative will only make you worse. Don’t worry; when you are tired enough, your body will sleep.”

I shuffled out of his office and my aide took me back down the mustard-yellow hall, through the mustard-yellow door, and seated me in a mustard-yellow chair. She lit my cigarettes until shift change when someone new came to light my cigarettes. I sat sleepless through that night and the next day the doctor said, “You’re a really tough case. You’ll probably need to be in the hospital for a very long time.”

“Please just give me some sleep medicine,” I said, and he refused.

“You’re a tough case for sure,” he said again.

One night, the charge nurse took me to the courtyard with her. She lit a cigarette for me and one for herself and said, “I hear you want to die. Why would you want that? You’re young and pretty and you have everything going for you! I wish I could be young again. I wouldn’t waste it in a place like this.”

I smoked my cigarette and held my beltless robe closed and I did not scream at her shut up shut up shutupshutupshutup. I could not understand why no one but me could see that I was already dead and it was only my stupid body that was keeping me trapped like a ghost among living people.

The nurses told me when to shower and I dutifully soaped and rinsed, my aide watching all the time while the water screamed insults and threats at me. I got out of the shower and lay in a soggy, naked heap on the bed, overwhelmed and unable to decide what clothes to wear. The aide sighed and brought me clean underwear and socks, then put two hospital gowns on me, one open at the back and the other open at the front.

I shuffled back to the day room and smoked cigarettes while the other patients swirled around me, interacting with their hallucinations, arguing over the TV channel, demanding drugs or food or freedom from nurses, aides, and other patients. The man down the long hall howled, hurling his familiar insults in his familiar way and I hoped that soon he would get his haldol or thorazine or whatever they gave to shut him up.

A nurse brought me a cup of orange soda and set it down next to my ashtray. “Drink this,” she said. “Eventually we’ll have to give you an IV if you don’t drink something. How do you think your parents would like that? How can you do this to them? Maybe I’ll take your cigarettes away until you drink something. Maybe I’ll even take your cigarettes away until you speak. Would you like that? No cigarettes as long as you keep sitting there like a statue?”

“Fuck you,” I said.

She looked slapped. “Fine. Drink your soda so I don’t have to call the doctor again.”

“Fuck you,” I repeated.

The nurse walked away. The aide looked at me over her newspaper and chuckled a little. “You might get well after all,” she said.

I drank the soda.

Frozen

I’m just…stuck. How did this happen, when I love my life? It’s a hard life sometimes, sure, but it’s good. It’s very, very good, so why am I not living, creating, and enjoying?

Sometimes, I get frozen.

Actually, scratch that. Often, I am frozen. I live long stretches of my life like a deer hypnotized by headlights and it’s infuriating and frustrating and as an excuse to hate myself, it’s powerful. As a good slippery place from which to descend into depression, it’s very effective, except neither self-hate nor depression is my goal.

Let’s say I just dropped Carter off at school or a play date. I come in from the garage, let the dogs out, and pour myself a cup of coffee. I’m good with all that but now it gets sticky because I need to make a decision: what should I do next? I haven’t posted to my blog in days or weeks and I want to write something, and I’m feeling some pressure because I hate that I don’t post more regularly. There’s a proposal for a column that I need to finish and I’m angry at myself because it’s an awesome idea, plus I need to make some money. There are submissions for my church’s literary magazine to be read. There’s a book for which I’ve promised a review and have only read half, a long list of emails to answer, and don’t forget my book, with its stacks of notes and half-finished chapters gathering virtual dust in their electronic folders! That’s maybe one-third of what beckons me from my office, but I assume you get the idea. It’s a mash of things, most of them fulfilling and interesting, but there is also some sense of…not exactly obligation, but my life is not as good when I don’t do these things. I am my best self in the office, when I am creating and exploring, but I also struggle in there.

I sit down at my desk and adjust my chair, put on some music, light a candle, open all the necessary tabs on my browser and…crap. The few words I’ve produced are awful. I’m feeling a little guilty because Carter wore dirty socks this morning, so maybe I should tackle the laundry. I get up and carry my coffee cup through the kitchen (need to clean! need to shop! try to ignore!) and down the hall. The green hamper outside the hall bathroom is so full, clothes and sheets and towels are poking through the little holes and things are spilling over the top. How this hamper is so full is mysterious since Carter’s room looks like a textile-factory explosion. I kick my way through the clothes so I can open the window because it doesn’t smell very nice in there.

To heck with this, I think. I’m not picking up Carter’s clothes. He can do that himself when he gets home from school. I’ll start with Brian’s and my laundry, and I head to my room.

Where I am hit over the head with the fact that my little red-headed apple didn’t fall far from this tree because every pair of socks I have worn in the past week is on the floor on my side of the bed. The bedroom hamper is no more than 5 feet from the foot of the bed (more like 4 feet, what with the over-spillage), yet I pull off my socks before I get in the bed every night and leave them on the floor. Here are more coffee cups (there are matching groups of cups on my desk and on the table next to my favorite chair in the living room), plus water glasses and a towering stack of books that belies the fact that I switched to e-readers years ago and much prefer them.

I sit down on the bed and clear a little spot on the nightstand for my coffee cup. I’ll just sort the laundry. I’ll start with that, and I’ll feel a little better. A little more in control. I get up to gather laundry baskets and discover that two of them are in my Abbie’s room, full of clean laundry she hasn’t put away yet. One is in the laundry room, full of soggy towels from Saturday when Brian gave the dogs their baths. Also, Spencer’s clothes are in the dryer and there is a load of sheets in the washer that smell musty because I ran them two days ago. I look around at the drifts of dog hair in the laundry room (which is also the dog’s “bedroom”) and decide I need to sit down and have another cup of coffee.

It all seems too much, too big, and the chatter in my head is unbearable. My folks, my sister, my ex-husband, my 10th grade English teacher, the psychiatrist I saw when I was 19, some therapists, a pastor from childhood, occasionally even my kids, all their voices bundled, amplified, and heavily distorted by my shame (except the voices of my sister and my ex-husband who would say my worst assessments of myself don’t go far enough). Except it’s all my voice. Sometimes I can drown them all out with an audiobook or loud music and actually get something done. Other times, I can’t get above the struggle. The voices are deafening and exhausting and I’m overwhelmed with guilt because I am wasting my day, my talent, or my life (Welcome to my ego; is it not an unlovely thing?).

I stir like this all day, almost every day. I feel like I’m witnessing a fight-to-the-death between my brain’s ability to focus, organize, and execute, and my life. I keep us functioning at an acceptable level: there is food in the refrigerator, clean clothes in the closets, bills paid on time(ish), and everyone gets to their appointments on time. I meet my obligations at church and in the other organizations I’m part of and I never miss a hard deadline (though the soft ones and the ones I set for myself are symbolic at best), but the rest of it is a relentless battle, and life is not what it could be. I don’t have energy for relationships, creativity, and fun because I’m exhausted from this internal fight.

But dammit, the noise! If I shut down and shut it all out (books, Netflix, web surfing), I can get a little peace but I don’t get anything done, don’t even really live my life. When I try to accomplish something, the nattering begins. I’m not good enough; why didn’t I do this sooner; who do I think I am. If I wash the window sill above the kitchen sink, I notice the horrifying state of the front yard, and if I dust the window sills in the living room, I notice the horrifying state of the backyard. Carter needs his fingernails trimmed, we’re out of milk, I told a friend I’d write a piece for her new website, on and on and on and I am tired. I’ve read the books, taken the medicine, talked to the therapists, done the programs and I’m just…stuck. How did this happen, when I love my life? It’s a hard life sometimes, sure, but it’s good. It’s very, very good, so why am I not living, creating, and enjoying?

I believe there’s a solution, but all I really know so far is this: being hard on myself is not that solution. I’ve done that and it does not work. What I haven’t done is share the struggle publicly so let’s see where that gets me. Maybe you’ve experienced the same thing and I’m not all alone in the world. Stranger things have happened.

National Children’s Mental Health Awareness Day: If the Diagnosis Was Cancer…

If the diagnosis was cancer instead of mental illness, my child would be treated with sympathy instead of judgment.

Today is National Children’s Mental Health Awareness Day, and though I’m hard at work on something else, I didn’t want this day to go by without posting a few words in honor of the occasion. I wrote this piece a couple of years ago and it is no less true now than it was then. Severe mental illness is devastating. It places crushing burdens (financial, emotional, spiritual, relational) on families, just like other serious and life-threatening illnesses do. Shouldn’t we, as neighbors, friends, family, and society, treat illness that originates in the brain with all the sensitivity with which we treat illness that comes from other parts of the body? Shouldn’t we spend money on treatment and research for brain-based illness at the same rate we spend money on other illnesses?

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.

Value Options and the Denial of Care: Continuing the Conversation About Mental Health Care

ValueOptions® would like you to believe that they really, really care about getting mental health care to everyone who needs it. I cry foul.

On December 20, 2012, I wrote a post called A Little Girl in Danger: This Is America’s Health Care Crisis, in which I told you all about my friend Kirsten and her daughter, Pickles.

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.

You Are Going to Pay for Our Kids

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.

For all of his struggles, and in spite of the amount of suffering that exists in his day-to-day life, Carter is among the very most fortunate of the seriously mentally ill children in the US. His prognosis is vastly improved for exactly one reason: money. My family has made an enormous investment in Carter, enabling me to stay at home so that Carter is with me during all his non-school hours, and paying for his tuition to the tiny private school where he finally feels safe enough to learn.

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