I am tired. Tired in the extreme. Tired enough to be a little concerned about driving.
Not half as tired as Carter, though.
Spring is flat lousy for some people with bipolar. No one really knows why; longer days, more sun, or some other reason (and don’t most of us feel a lift of mood and an increase of energy this time of year?), but for many people with mood disorders, Carter included, mania comes into the house and makes itself at home in the spring.
Spring also causes a decrease in the levels of mood stabilizing medicine in Carter’s blood. Lithium is a salt, and as the weather gets warmer, he drinks more water and sweats more, thus moving lithium through his body faster and allowing his blood levels to drop below their optimum therapeutic level.
Carter is miserable with his inability to sleep (he’s averaging 6 hours a night for the past two weeks, with a few nights as short as 2-3 hours).
We’re miserable with his inability to stop talking and spinning.
No, seriously, he talks. Constantly. Without ceasing, literally. If he runs out of actual things to say, he does nonsense rifs composed mostly of curse words and slang scatological terms. In the bathtub, he sing-songs endlessly I’m gonna poop your ass! I’m gonna fart your butt! Poopy butt! Poopy butt! I know you have a poopy butt! Which is actually kind of funny for a few minutes, until it makes me beg Brian to saw my ears off with a rusty table knife.
And what does that even mean, poop your ass? I should probably know, since he says it at least 70 times a day.
Worse is that he’s terrified to go to school because he knows he’s barely holding himself together. Except that’s not exactly true; he hasn’t been violent, or even especially destructive, but he feels out of control and his anxiety is through the roof, so he’s afraid he will hurt a classmate or (much worse in his mind), say something to hurt his favorite teacher’s feelings.
I remember all too well the horrors of 3 years ago, and I know that, while Carter’s illness is active right now and it’s nothing anyone would call fun, it’s also a far cry from the worst we’ve endured. Carter barely remembers the worst of that time (thank God for slippery memories and the ways they sometimes protect us) and doesn’t enjoy the perspective that I do.
Although if I’m being honest, I will admit that at 3 am, perspective is bullshit.
Sleep is one of the purest, simplest pleasures in life, not to mention essential for happy, healthy daytime functioning. He deserves to enjoy more of it. I’ll be calling his psychiatrist tomorrow. If you pray, feel free to say a few words in favor of his doctor having an inspired idea that will get Carter sleeping again!
This was kind of a big deal for me because I’ve always sworn I would never meet any of my online friends in real life. No way. I enjoy my online life and I was afraid that, if I met my virtual friends, we might hate each other. It seemed too risky.
But I’m also kind of a sucker, and Olive pretty much twisted my arm (not really), so here she came, Pickles in tow.
Pickles is a little younger than Carter, but they have a great deal in common. They both love dogs and they both have psychosis, for instance. They both enjoy cartoons and both can go from happy to raging (or terrified, or despondent) without warning.
Just two little kids but more, which is why Olive and I met each other online in the first place. In spite of what the media says, the community of parents whose children have serious mental illness is really quite small.
But the kids did great, for the most part. Carter was fascinated by Pickles’s medicine and eager to compare it to his own. It was all so new to him, this opportunity to be around another child whose experience of the world was similar to his. Every time he was alone with me, he talked as fast as he could, dissecting Pickles, telling me all the ways they are similar and all the ways they are different. He’s a surprisingly introspective person when he’s not screaming at people to stop looking at him.
The third day Olive and Pickles were here, I had to pick up Brian from work and everyone wanted to come along with me, so Carter and Pickles piled into the back seat and Spencer rode shotgun. Halfway to our destination, I heard Pickles say, “I don’t want to talk about that!” She was looking out the side window, away from Carter.
Carter launched into a long, impassioned explanation about how he didn’t mean to upset her, but if she would just listen he could make her understand because what he’s saying is very important and if she would just uncover her ears and listen to him he could make it all OK!
As he does. You know how some people see a problem and immediately start throwing money at it? Carter thinks that there is no problem too large to be solved if you just drown it in words.
Pickles refused to uncover her ears or turn and look at Carter, so he redoubled his efforts, increased his volume, and tried to pull one of Pickles’s hands away from her ear. “But I was just trying to tell you…”
She clamped her hands back over her ears, turned to face Carter with her face screwed up tight with fury and said, “I have to take some space and this is my only way to take some space. You have to let me take some space!”
Carter, his own face now growing stormy, responded, “I am not in your bubble!”
And they went, lobbing therapy-speak back and forth across the back seat at each other, trying to find the magic words learned from some doctor or counselor or behavior management specialist that would solve the problem. “You should use your skills to calm down!” “I already used my skills! You use your skills!” “I can’t because you won’t let me take some space!” “I would let you take some space if you would use your skills!”
Finally, Pickles turned back to the window, hands clamped tight over her ears, humming loudly. I could see Carter in the rearview mirror and I could see that he was approaching nuclear meltdown. Face bright red, jaw clenched, he hissed “I am so angry right now!”
Meanwhile, I was in the front seat doing my best drone imitation, speaking in a near monotone, “Everyone is OK. Let’s all take a deep breath. Carter, you look out your window. Pickles, you look the other way, out your own window.”
They weren’t listening to me, which is not surprising since neither of them was listening to anything except the pounding of their own anger.
Finally, we arrived at Brian’s office, and Spencer got in the backseat between Pickles and Carter. “You look out that window,” he said to Pickles, “and you look out that one,” he said to Carter.
And they did.
And all was quiet on the way home.
If you hear me refer to that dark-haired 14-year-old boy who lives in my house as Saint Spencer, you’ll never wonder why.
My husband and I took the rest of the kids to hear him and we had a nice time, or as nice a time as any 40-something adults can have in a large crowd of teenagers. There is deep joy in watching our teens circulate among their peers. Abbie, my 15 1/2 year old daughter, ran into some boys she knew from school and spent the time flirting with them and bragging (oh-so-subtly) that the guy on stage was her brother. Spencer, my 14 year old stepson, hung out with some of Jacob’s friends, eager to test his social prowess before he officially starts high school in August. Jacob took the stage and although he was visibly nervous, he performed wonderfully. The audience was caught up in the off-center humor with which everything Jacob creates is infused.
Of the hundreds of things that Carter’s illness (bipolar with psychotic features, among other things) has robbed from us, one of the saddest is the tempering of joy. I try very, very hard to be in the present, but I’m rarely 100% successful. I couldn’t help thinking that Carter will probably never enjoy the social successes that our other children have achieved. His heart is as generous as any of his siblings, but his illness too often covers his kindness. He wants to make friends, but his bizarre conversational tics and habits scare other children.
So I’m proud of Jacob. Wildly proud. Warm from my head to my toes proud.
But also sad.
Carter, in the past year or so, has become increasingly aware that he is different. Most of the time, he’s caught up in his own concerns—the hallucinations, delusions, obsessions, anxieties, and compulsions that propel him through his life—but lately, in his more alert moments, he knows that most people don’t struggle like he does.
That awareness tears him apart. It causes me to have a bizarre not-quite-wish that he was just a little sicker—sick enough not to understand what he doesn’t (and likely won’t ever) have: play dates and sleepovers, parties and performances, teams to join and extracurricular activities to enjoy. Friends that everyone can see and hear. Confidence, contentment, and fun.
As he gets older, we are less and less able to prevent his dawning awareness and the violent self-hatred that results from it. His siblings are so much older than him that he has, until recently, not compared himself to them. They were Big Kids who did Big Kid Things, vastly different from the things that he did. At 8 1/2, 6 1/2, and 5 years older than Carter, they were almost a different species. Lately, though, there are questions. “How old was Jacob when he had a sleepover the first time?” “How many friends did Abbie have when she was the same age as me?” “Was Spencer scared to go to school when he was in second grade?”
I always knew that Carter’s innocence (about this one thing, at least; he’s innocent about so little) wouldn’t last forever. I knew that my basic explanations (Everyone has a hard time with some things, and this is what’s hard for you.) wouldn’t hold water for long. It’s sort of like teaching my other kids about reproduction. At first, I gave vague descriptions of babies who grow in women’s bellies like magic beanstalks, or some such. And at first they were satisfied. Eventually, though, I had to talk about eggs and sperm, and how one got in contact with the other.
That was a piece of cake compared to this, because as much as teaching my kids about sex was a little uncomfortable, it was a natural thing to be doing. I was explaining a normal part of life to kids who would one day experience it (much as I don’t want to even consider that!). But Carter’s illness is a perverse twisting. A wrongness. A misery-creating beast.
My husband and I talked long, long into the night last Friday, contemplating all that Carter suspects, knows, and fears. We discussed what to tell him, and how, and when. How do we help him understand the reality of his illness, while helping him remain hopeful? How do we teach him to let go of expectations that are tied to what everyone else does, and grasp at goals that are within his reach? Will he be relieved or devastated?
I don’t know, and sometimes that’s the hardest thing. I just don’t know.
I’d shrug if I could stop imagining Carter’s pain if I get it wrong.
On our way home from his therapy appointment today, Carter and I stopped at a red light at the bottom of a freeway off-ramp. Since freeway on-and-off-ramps are popular spots for panhandling, neither of us was surprised to see a young man there. His jacket and pants were grime encrusted; his face and hands were dark from sun and dirt. Most notably, he was carrying on an animated conversation with someone no one could see but him.
Carter watched him silently for a moment, then said, “He’s talking to his little guys, I think.” Little guys is what Carter calls all of his visual creature-like hallucinations.
“Yes, I think so.”
Carter grew quiet again, watching the man and twisting his hair around one of his fingers. “He must not have the right kind of medicine to make the little guys go away,” and he paused, frowning, before he whispered, “I feel sad about that.”
I imagine that the young man’s mom feels sad about that, too.
If you live in an age of social media, and if the most powerful woman in television does a show about something you are experiencing in your own life, you will get a nice, long look at exactly what the world thinks of you.
Which is…….shall we say…….enlightening.
Oprah featured Zach, a young boy with mental illness, and his family on her show today. I was nervous before the show because television has not historically been awesome with portrayals of families affected by mental illness. Dr. Phil did quite the hatchet job on Jen and Brad Wohlenberg in 2009 with a show that did nothing but expand the stigma and judgment of people with mental illness and their parents. I didn’t have high hopes.
In general, though, Oprah did alright. She had enough humility not to question the existence of Zach’s illness, nor its severity, which we parents of kids with mental illness expect as a matter of course. She let Zach and his mother, Laurie, say what they wanted to say, and I very much appreciated that Oprah spoke to Zach with respect.
Oprah was describing things he had done, most notably wielding a knife and threatening to kill his mom. I (ever desperate for something with which to reinforce my denial) said to Brian, “Wow, I’m glad Carter has never been that violent!”
Brian frowned at me and said, “Of course he has. He just tried to kill himself instead of trying to kill you.”
I really hate the sound of the air leaking out of my pretty purple denial-balloon.
Oprah and Laurie talked about other things, things that loom large in the lives of my family and millions like us: shame, isolation, fear, guilt. Day-to-day life is painful and difficult, sometimes dangerous. All of that is true.
What is also true, and even more important with respect to public awareness, is lack of services. At every level, in almost every community of the United States, the mental health system is lacking.
Not lacking a little. There are no “gaps” in our system because there is barely a system at all.
That is what we want you to know. That is what we want you to remember, to write letters about, to scream from the rooftops.
We’re too busy holding our kids and our families together to write as many letters as need to be written. We’re too busy trying to force a profoundly broken medical system to meet the needs of our loved ones. We’re too busy taking care of suicidal and/or homicidal and/or acutely psychotic kids at home because there are no hospital beds for them. We’re too busy homeschooling our kids because the public schools can’t or won’t meet their needs. We’re too busy trying to help our healthy kids have the most normal lives possible. We’re too busy grieving the lives we thought we and our children would have.
Sadly, Oprah missed her opportunity to go beyond the shocking aspects of pediatric mental illness to what Zach and kids like him really need, like more pediatric psychiatrists, more hospital beds, more residential and day treatment programs, and better public school options for kids with mental health issues. We need respite care and more high-quality research with non-ambiguous funding sources.
Just like every family facing a serious chronic illness, our needs are significant. Until we decide, collectively, that it is not OK to send children with mental illness and their families home to deal with things the best they can, we’re stuck cobbling things together the best we can.
Try to imagine that this situation exists for some other problem. What if the state you live in closed 90% of its neonatal intensive care units and started telling most parents of premature babies, “Gosh, sorry, we’re all out of incubators. Good luck!”
We parents of kids with mental illness live with this constant sense that we are being judged or, at the very least, disbelieved. The mental health care system does nothing but reinforce this. When your child is in crisis and you call out for help and the person on the phone makes you an appointment for six months in the future, what can you think except that the whole world believes the problem is not real?
Social media tells me that that sense of being judged is accurate. Also? It can be pretty damn funny.
I spent a little time cruising the comments about the show at Oprah’s site, and a little more time reading tweets about the show. I found a pretty awesome display of ridiculousness. Here is my summary of the proposed causes of pediatric mental illness:
Heavy metal toxicity
Multiple chemical sensitivities
Poor discipline or lack of discipline (or as Brian and I refer to it, a serious prophylactic beatings deficiency) (I’m always left wondering: is the problem that I beat my child (abuse) or that I don’t beat him enough (poor discipline)? The judgers need to make a decision.)
The most popular among these is demonic possession. Show me a blogger who writes about a child with mental illness who has never gotten an email that says, “Your child doesn’t need a psychiatrist. He needs a priest!” and I’ll show you a blogger who is just starting out.
In fact, the demonic possession emails and comments are amusing or, at worst, a nuisance. Ditto people who need to beat a drum about heavy metal toxicity, chemical sensitivities, and other fringe theories.
The abuse and trauma stuff, though? That shit can hurt, especially when it comes from friends, family, or medical or education professionals. Brian and I consider ourselves incredibly fortunate because Carter is the youngest of four children, and our three older children are mentally healthy, with only the most ordinary of emotional issues. We have often used Jacob, Abbie, and Spencer like badges, proof that, as imperfect as we are, we aren’t totally corrupt. Still, it hurts to know that we are viewed with suspicion by so many people.
I do get it. I understand that when people watch Zach on Oprah’s show, or read about Carter and other children with serious mental illness, it seems unlikely, even outrageous. How can it be possible, that a child would explode in anger over nothing? Why don’t the parents don’t just put a stop to it? For goodness sake, take away his privileges until he pulls his shit together!
It’s easier to believe that we let ordinary behaviors of childhood get out of control. We allowed tantrums to turn into dangerous rages. We encouraged imaginary play until it became psychosis. We indulged fears until they morphed into crippling anxiety. At every stage, we refused to discipline, guide, control, or punish our children such that they learned to think, feel, and behave normally.
That is equivalent to punishing a child with cancer for growing a tumor or sending a child with muscular dystrophy to bed early because he won’t stop falling down.
Incidentally, demons don’t cause cancer or muscular dystrophy, either.
And finally, Oprah closed the show with a long conversation about positive and negative energy, and how Zach manages his symptoms by focusing on the positive. I’m at a bit of a loss about this. On the one hand, we work very hard with Carter on a set of skills that he can use to regulate his feelings. An extremely simplified (because of his age) form of cognitive-behavioral therapy, it’s a key component of our treatment strategy.
On the other hand, I’m troubled by what I see as excessive focus on that aspect of Zach’s treatment. A person who is seriously mentally ill cannot trick or talk him or herself out of that illness or its symptoms. I take issue with Oprah’s extended focus on positive energy and white light, giving short shrift to the many other essential aspects of effective treatment, and the nearly insurmountable barriers to accessing that treatment.
Mental illnesses are complex and require multi-faceted treatments. Not everyone who is mentally ill can achieve a “normal” life. Extended conversations about the power of positive thinking and the like serve only to minimize the tragedy that mental illness can be, and give people who want to deny the seriousness of mental illness a little more ammunition.
From where I’m sitting, the deniers don’t need any more ammunition.