A Dislocation of Mind

Right now, millions of people in the US cannot access needed mental health care. My daughter is one of those people, and her life is at risk.

My 17 year old daughter, Abbie, broke her leg the other day; a bad break in her femur. She was in terrible pain, begging me to make it stop, to help her feel better, so I took her to the emergency room. We went there, and we waited for 6 hours, and finally a Bone Health Specialist came and told us that we should go home and make an appointment to see an orthopedist.

“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.

Happy In the Meantime

Real happiness is nothing like what we see on TV. That happiness 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.

I was diagnosed with major depressive disorder when I was 18, and even at that early age the diagnosis had been a long time coming. Near as I can remember (and depression + many years have done their work on my memory), I had my first serious episode of depression when I was 8 or 9 and by the time I started middle school I was dysthymic (mildly depressed) most of the time with 2-3 episodes of major depression every year.

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.

The Transcendent Familiar 4: Give Yourself Away

Part 1
Part 2
Part 3
Part 3.1 (except it’s less of a part and more of an interlude)

We all grow up with rules.

I’m not talking about the regular rules that our parents speak aloud – no running in the house; don’t sing at the dinner table; if you wear your tap shoes in the house you’ll scratch the floors and you don’t want to know what will happen next, young lady!

I’m talking about the underneath rules, the ones that make it impossible to get along with your in-laws because you don’t know their rules and they don’t understand why you don’t know them because they make so much goddamn sense and everybody knows this is how people with an ounce of common sense/human decency/intelligence behave and what the hell is the matter with you?. They are so deeply ingrained that we can’t see them without a shock of some kind – a family crisis like an addiction, divorce, or someone deciding to go to therapy.

The most important rules in the family in which I grew up are tightly related:

  • Thou shalt not be needy.
  • Thou shalt not seek attention.
  • Thou shalt not feel sorry for thyself.
  • Thou shalt blame thyself for all things.
  • Thou shalt solve all problems with guilt and shame.
  • Thou shalt seek to absolve thyself of misdeeds and mistakes with perpetual regret.
  • Thou shalt seek to absolve thyself of others’ misdeeds and mistakes with perpetual regret. (See previous rule, “blame thyself for all things.”)
  • Thou shalt cultivate shame vigorously, hanging thyself on all available hooks.

Of course, these are not the rules my parents intended to teach me, but they’re the rules I learned.

Hence, I don’t know how to talk about my marriage to Robert because I don’t have much practice. If your familial tradition causes you to scream internally, it’s all your fault how could you do this you are such a goddamn loser what a waste why couldn’t you make it work what is wrong with you, it’s damn hard to take a step back and start sorting out the parts that are not your fault.

I’ve been sitting on this story for weeks, unable to find my way in. The internal screeching is loud, insisting that I rise above; take the high road; be the bigger person.

Also, every time I think of something that happened in our marriage that hurt me, I think of something that I did that, somehow, caused me to deserve it. This should probably come as no surprise since that’s how Robert and I fought when we were married, except that back then I was saved the effort of thinking of the thing I did that was worse than the thing he did because he did that part for me.

Clear as mud? Yeah, it doesn’t make much sense to me, either. How could it? I make sense of my life with words and stories and I have denied myself this story until now.

Since Robert moved out on July 4, 1997, I have carefully engineered a neutral narrative of the relationship that was central to my early adulthood. I have said, “We were far too young to get married,” “We brought out the worst in each other,” and “We didn’t have the tools we needed to make our marriage work.” I’ve spoken about my first marriage as if it happened to someone else; stripped it of its emotion and meaning.

To be clear, I am in favor of dignity and integrity. I’m proud that, post-breakup, I didn’t go out and talk trash about Robert to everyone who would listen. The cost, though, was the truth. In telling the story of our marriage in neutral terms over and over again, I denied myself the healing that comes from telling my story. My truth.

And you know what I say about he truth: it ain’t about the facts.

My story doesn’t match Robert’s, but that doesn’t make it wrong. It only makes it mine, if I will claim it.

My story begins with the rules that shaped my psyche. To say that I arrived at my first wedding (all of 22 years old) with low self-esteem would be an egregious understatement. More like the weight of my shame was roughly equal to that of a Volkswagen I wore strapped to my back.

I viewed my life not as something to be lived, experienced, and enjoyed, but as an exercise in contrition. Every moment was an apology for my very existence; every aspect of myself (body, mind, spirit) in dire need of reformation.

Robert concurred, which probably explains why our marriage sort of worked in the beginning. We agreed that I was broken and he was the savior who could have married a better woman but chose me instead. Repairing my faults – depression; tendency to gain weight (though at the time we married I had never been truly fat); messy habits; inability to cook; love of books and reading; devotion to made-for-TV movies; interest in politics; affection for very long showers; desire for education; and refusal to even try to understand why Robert and so many others thought Seinfeld was funny – would be my project. By conquering them I could become, if not worthy, at least acceptable.

So we moved into our lives, the contract signed and sealed but unacknowledged. My flaws were my demons to conquer if I was to earn my place in the home of the man who deigned to marry me.

He had done me a great favor by marrying me, so I set out to make the best of it.

And then there was this:

I had finally done something right, after all.

Robert and I both fell extravagantly, unreservedly in love with our Tooter (no one called him Jacob until he was three). He was pure light, all soft-sleepy sweetness and milk-drunk joy.

Our love for him was so large, it erased everything else. For a time, I was (almost) everything that Robert and I thought I should be.

For a little while.

Part 5

Bombarded

First things first: you people will never know (no matter how hard I try to tell you) what you have done for me this week. I want to respond to all your comments individually, but being emotionally overwhelmed. . .well, we’ll see.

In any case, many, many thanks. This being-separated-from-Jacob-and-Abbie is one of the most painful things I have ever experienced and your love and support is one of the things that keeps me from climbing under the bed and waiting there for death via dust bunny asphyxiation.

If I was a different kind of person, I would have come home from dropping Carter off at school this morning and said to myself, Self, there is a lot to day today and this house is very messy. I’m going to sort the laundry and, after I get a load started in the washer, I’ll clean the kitchen. When the kitchen is clean, I’m going to return some phone calls and after that, I’ll take a break and decide what to do next.

But I’m not a different kind of person; I’m a me kind of person and when I came home from dropping Carter off at school this morning I said to myself, Self, this house is a fucking disaster and I’m behind of everything so I better damn well get busy with something and I should start with those phone calls because my God, how can I expect people not to hate me when I don’t ever call them back but wait I should get some laundry started first or no, that’s not right, I should deal with the kitchen because how the hell can a person stand to live in a house with such a dirty kitchen but if I do the kitchen I should try to figure out what that stink in the refrigerator is but before I do that I really should start the laundry because, wait, does Carter have any clean underwear oh, my God did he go commando this morning and what kind of mother am I and I haven’t written a blog post in, I dunno, maybe three days so I should probably go upstairs and do that now but how can I even think about writing when there are so many other things to do and I think one of the dogs peed in the dining room so I should go get the tools and fix the gate to keep them out of there but if I was a halfway decent person who even deserved to own dogs I would have trained them not to pee in there a long time ago and I wonder how many emails I need to answer oh shit do you remember that blogger who recently said she answers every email she gets from her readers and how I thought, oh, I want to be that kind of blogger and who am I kidding I suck way too much to ever manage something like that and oh, no, I forgot I need to make those appointments for the kids and that one for myself and I should start thinking about what to write for the First Things First series and I haven’t seen Grammy since last week which figures since I’m the world’s shittiest granddaughter and I wonder what’s on TV?

At which point one of two things happens. Either I crawl into the couch with the remote control (or screw around on Twitter, or do something equally non-productive) or I buzz around trying to do everything. In either case, I accomplish nothing, which means I get further behind, which means that the following day, when I come home from dropping Carter off at school, I’m right back where I started.

When my sister and I were little girls, we fought all the time – that kind of constant, pick pick pick sibling arguing that kids seem, almost, to enjoy, but that drives parents to distraction. When we really got going my mom would sigh and say, “You girls make me tired.”

I feel that way about my brain. It makes me tired.

Under Siege

My head hurts.

Actually, I have pain from my forehead, up and around the back of my head, down into my neck, and spreading across my shoulders and down to my back.

Why? Because I don’t like my kid much these days, and that’s a shitty way to be feeling.

If I had a nickel for every time I’ve wished that, if my kid had to have a disability, he could have gotten one that didn’t make him so damn unlikeable, I’d be able to buy myself a new car.

That right there is a shitload of nickels, my friends. Too bad my personal nickel dispenser has fallen asleep at the switch.

We wake up in the morning and he immediately starts acting like an asshole. There’s a fight over whether or not he will take his medicine; over how long it takes to properly brush one’s teeth (I am annoyingly devoted to the notion that 8.2 seconds is not long enough to keep his teeth in his head.), and over whether or not he can wear this or that favorite shirt for the fourth day in a row.

Most days he asks me, “Can I have cookies for breakfast?” Or he asks for ice cream, or pretzels, or something we don’t have. It’s like a dance and as much as I want to sit out, I’m pulled to my feet to take the all-to-familiar steps.

“No.”

“Fine, I won’t eat anything.”

“Your choice, but if your medicine makes you barf, you’re not staying home from school.” One of the medicines he takes causes Carter to throw up if he swallows it on an empty stomach. He managed to stay home several times before I figured out that he was playing me by pretending to eat breakfast.

“FINE! I’ll drink some stupid fucking milk. Can I take cookies for lunch?”

“You can take two.”

“That’s stupid. I’m taking the whole bag and you can’t stop me!”

“Two or none, you choose.”

“FINE! You’re a stupid fucking bitch asshole!”

“Go to your room until you’re ready to use your skills.” Use your skills is code for get your shit together. No, in fact, it’s code for a set of things he’s learned to do to regulate his emotions; sometimes he’s pretty good at using his skills, and sometimes he’s absolutely unwilling.

These days, he’s almost always unwilling.

On his way out of the living room and toward the stairs, he may or may not try to hit me. If he does try, I may or may not lose my as-yet-inadequately-caffeinated patience and yell at him. As he stomps up the stairs, he shouts one word per step: I. HATE. YOU. I. HATE. YOU. As he stomps, I may or may not think about my first marriage, and how this all feels awfully familiar in some ways.

From my perch on the couch, I can hear him upstairs chanting to himself, “My mom is a stupid fucking asshole asshole asshole. No cookies for me because Mom is an asshole.” Stomp stomp stomp. I sip my coffee and hope that I remembered to lock my bedroom and office doors, in case he starts feeling more destructive than usual.

I just want to make the boy some breakfast and drink my coffee while he eats. The dogs stare at me longingly from the other side of the sun room doors but I won’t let them in until after Carter has gone to school.

Eventually, he comes downstairs and apologizes for the way he was talking. He hugs me. I ask, “Do you know what you need to do next?”

“I have to eat something and take my stupid asshole medicine.”

“Yes, you need some breakfast. Do you want cereal or a smoothie?”

He may or may not start in about the cookies again. I may or may not lose my still-inadequately-caffeinated patience and yell at him. We may or may not also have noise and drama over shoes or other articles of clothing; lunch (into which I never manage to put quite the right things); face and hand washing; putting breakfast dishes away; and missing items like his agenda or water bottle.

By the time we’re ready to walk out the door and get into the car at 8:05 am, I’m having an existential crisis.

Every. fucking. day.

And this? This is, relatively speaking, pretty good. Or not good, but a long way from what we know as bad. He’s not suicidal; he’s functioning well at school. He has only the mildest of psychotic symptoms.

I can’t believe that what I’m living right now is what passes for “pretty good.” I can’t believe this is my life.

After I pick Carter up from school, we do battle about a different set of issues. He’s a little less angry in the afternoons, but a whole lot more hyper. He often has appointments after school, and he gets angry that we can’t go straight home. That wouldn’t be so bad except that, if we do go straight home, he’s still not happy.

I try to force some kind of positive interaction – anything to alter the mood, or at least remind us both for a moment that we love each other. Sometimes I am successful; often he is so determinedly miserable that I am unable to breach his emotional hull.

My head still hurts, and I don’t have a way to end this post. There is no tidy closing, no hopeful Scarlett here to say, “…after all, tomorrow is another day!”

Tomorrow is another day. Another day to fight and struggle. Another day to read articles written by people with way too much influence who say that pediatric mental illness is not real. Another day to call Carter’s psychiatrist in hopes that we can make a tiny chemical adjustment and improve things. Another day to see Carter’s psychologist and try to learn something new that will make life a little more bearable. Another day to try to do all my living during the hours when Carter is at school and after he goes to sleep, because when he is home and awake, I am under siege.

Another day to drink too much coffee and swallow too much aspirin and try try try to control my feelings because Carter is incapable of controlling his.

Another day.

I want my nickels, dammit.