I want to live at Ikea

photo by Karen Tam

Claire and I went to visit Elizabeth on her sixth night in the emergency room in Winston-Salem. On the way home, we decided to swing by Ikea in Charlotte. She's never been and it was the closest we've been in a while.

Ikea isn't hopping on a Wednesday night. We wandered through, looking at well-designed kitchens, trendy light fixtures and perfect paint colors. My favorite parts, though, are the complete homes, fitted into a 375 square foot space, a 600 square foot space and others. There are no dirty dishes waiting in the sink, no bills to be paid, no clothes hanging on chairs. The people aren't home and the space is spotless. Obviously, invisible beings sneak in after business hours and tidy up. I'll bet the washer and dryer work. And there isn't any mental illness.

I want to live at Ikea.

But I don't and so I just keep muddling through the messes. Elizabeth spent a solid week in the ER, over-sedated, restrained, no art supplies (she hurt herself with them), no phone (she kept calling 911 to get her out of there), no books, no school (she wasn't admitted so she wasn't eligible for the hospital school), no visitors except me, no exercise, and eventually no TV (taken away for her bad behavior). I finally took a photojournalist in with me on Wednesday, sponsored by an organization that provides information on mental illness to legislators. Elizabeth's hair is matted and wild, her skin ashy, self-inflicted sores on her hands. The journalist's organization was disturbed enough that on Thursday afternoon they contact Health and Human Services, the state administrative body that supervises care of the mentally ill.

I spend Thursday morning on the phone with the child psych fellow at Baptist, arguing for her to be admitted there. Not possible, he says, she's too high acuity. We have to wait for a bed to open up at Butner. Butner may be a ten week wait, I counter. He then tries to explain mental health care in NC to me. He suggests next time we choose a PRTF closer to home. I then explain mental health care in NC to HIM. There are 29 PRTFs in NC. Each takes 12 or fewer children. She doesn't qualify for many of them. The closest is 80 miles away from Chapel Hill. They kicked her out. He explains that they are upping her meds, hoping to sedate her. I don't feel that I have any choice but to agree. He's not unkind, but he doesn't seem to get it that anyone might have difficulties behaving in a small room for a week.

Interestingly, that night at 1:00 am I get a call from the on-call psych resident. I'm out cold and beat on the alarm clock for a while before I realize it's the phone. By then, she's hung up but I call back and get her. It's been a hard night, she tells me. They've shot her up with haladol and she is sleeping now. But the decision has been made to admit her to Baptist's "Behavioral Health" unit, the very one that turned her down that morning. I ask why the change? Not sure. I suspect that now that HHS has become involved, keeping a 12 year old restrained and sedated in an ER bed for a week now looks a little, well, archaic? contrary to the Hippocratic Oath? First do no harm. The harm that has been done to her in the last few weeks may be irreversible.

I go up last night to see her and scope things out. It's a beautiful unit. The rooms are large and the staff is friendly. They have a one-on-one security guard assigned to her at all times. She had finally gotten a bath and some lotion on her skin. The desk clerk was braiding her hair. For the first time in two weeks I feel she is safe and cared for. We have friends who work at Baptist, friends in positions that they can be advocates for her. I sleep well when I return home.

It's not perfect. I argue with the charge nurse over some of the drugs she is given. The nurse wants to override Butner's six week observation, testing, and diagnoses. She's psychotic, the nurse says. No she isn't, I say multiple times, my voice steadily rising. She counters that she seemed disoriented and showed disorganized thinking during the one afternoon she had observed her. She's drugged out of her gourd, I tell her. I show her a picture of Elizabeth a few months ago, hair groomed, big smile, the lights on in her eyes. The nurse looks away and stops arguing.

They call me at midnight to tell me they have had to give her thorazine and put her in seclusion. She kept pushing the call bell and finally pulled it out of the wall. Shit. I forgot to tell them how scared she is of the dark and how she'll do anything to keep someone with her. Her worst times are always at night.

The downside to this is that she is off the waiting list for Butner. I'm not sure what that means for the long term. Our case manager and a family friend are working together to write applications to new PRTFs, even though the case manager doesn't get paid since Elizabeth is in the hospital. There ARE some good guys here.

People wonder how such a thing can happen. It happens because we let it, because we hide mental illness away out of shame. If this were a child with cancer, would we sit quietly by? I don't think so. If we treated the physically ill like we do the mentally ill, it would mean that we required the emergency appendectomy patient to wait a month for surgery. The breast cancer patient would be turned down at hospital after hospital because they had already taken a patient from Orange County and the waiting list for Orange County beds was three years out. The epileptic would be asked why he was refusing to control himself. The brain cancer patient who had private insurance would be told that insurance would cover just one chemo treatment every month, even though the accepted protocol for his illness required it daily for three weeks each month. He might find that his doctor won't take private insurance because only Medicaid covers the full amount. Another patient might find her doctor wouldn't take Medicaid because the state was so busy auditing practitioners that it left no time for them to practice.

Private insurance companies can't make money off of mental illness, so if they cover it, it's only half-heartedly. If this were Claire, back in the days when we could afford insurance, we'd be up a creek. Luckily Elizabeth has Medicaid as part of her adoption assistance as a high-risk child. It's not perfect, but it's far better than anything else I've seen. But that is being cut too, under the misguided notion that it might save the state some money. State Medicaid dollars are matched by the federal government and so cutting one state Medicaid dollar loses us two. And the kind of care she was getting in the ER costs us tons. It's ineffective, even harmful care at high prices.

I'm not ashamed of her illness. She is my beloved child, created in the image of God. So are the other children languishing in ERs across the state. First I will get my child taken care of, making as much noise as it takes. But even then, I have no plans to shut up.