Hope and Other Luxuries

by Clare B. Dunkle

  “I wish I could be there,” I said, feeling sudden sharp guilt that my daughter was having to go through her big day without me.

  “It’s all good,” Valerie said. “Kinda glad you’re not. It’s not like you’d see me at my best.”

  “Are you going to the hospital now?”

  “Nah. There’s plenty of time. I’m going back to bed. The hospital’s only five minutes away.”

  In the morning, Valerie called again to say that they were on their way to the hospital. She sounded amazingly relaxed. Then Elena and I talked to Clint. He sounded like he was being mugged.

  “I hope Clint doesn’t drive,” Elena confided to me. “He’s so nervous, he might pass out behind the wheel.”

  Off and on, Elena and I got updates. Then came the first photo of Gemma, Valerie and Clint’s new baby girl.

  I sat down on the bed, and I looked at her, and I cried.

  What is it about a new baby that makes life seem like such a miracle? Is it the thought of the danger along that first lonely journey? Is it the fact that so many things have gone right when they could have gone so terribly wrong?

  A brand-new person has entered the world. Something completely unique has been added. Our lives—the entire planet!—will never be the same.

  Valerie’s baby. Clint’s baby. Their voices brimmed with excitement and wonder. The most ordinary sentences vibrated with hidden awe. As the photos came in, I could see it on their faces: This is an event greater than each of us and greater than all of us. History and Fate have paid us a visit.

  The air of the hospital room was thick with angels.

  I remembered that very first day, when Joe drove home from the hospital at twenty miles an hour, cursing out the window at any motorist reckless enough to drive within fifty feet of the car because our precious newborn baby was in the backseat. I remembered carrying her up the apartment stairs—oh so carefully! We put her down on our bed and the two of us sat and looked at her . . . just looked. “Our baby is beautiful,” Joe had said softly, and I could hear the awe in his voice.

  Now, I was a grandmother, and Joe was a grandfather. The wheel had turned, and we took our rightful places.

  The birth of this new family member wrapped a spell of peace and happiness around the whole house. Elena finished her packing. Very early the next morning, Joe and I drove her to the airport and hugged her good-bye. We watched her walk away through security. Then we went to a nearby pancake house and ordered breakfast—just the two of us again.

  The last few months had been chaos. The next few months would be crazy. But right now, I stirred my coffee in its chunky mug and felt contentedly old and ordinary. The relief I saw on Joe’s face mirrored my own relief.

  One daughter was a real adult, with a husband and a family. The other daughter was getting the help we couldn’t give her. Joe and I were well on our way to fading into rest and retirement, and we were more than ready to play that part.

  “Do we get the senior discount?” Joe asked the waitress. “We’re grandparents now. Look!” And he showed her Gemma’s picture on his cell phone.

  Joe dropped me off at the house and went on to work, where he would no doubt field complaints from colonels and generals as far away as Korea and the Indian Ocean. I crawled back into bed and slept like I hadn’t slept in months.

  Elena woke me up to tell me that her plane had landed and that she needed help finding Clove House. Then she called again to tell me that she’d gotten there and they were processing her in. She had to put away her cell phone now, she said. She wasn’t allowed to keep it with her.

  She sounded nervous, but I felt perfectly calm.

  I had heard of people feeling lighthearted. Right then, every single part of me felt light. I could feel the enormous weight of Elena’s life-or-death struggle lifting off my shoulders. I got up to feed Dylan dinner, and he puffed his blue-green fins out like sails and swam into the palm of my hand. I fixed food bowls for Genny and the cats and watched them roll over, one after another. Then Genny went scampering around the yard on her ridiculously thin legs, and the cats bolted after her and raced up and down the tree, while I stood in the bright, clear sunshine and laughed.

  Later, when I cleaned the kitchen, I turned my favorite music up loud. Elena wasn’t there to creep out of her room, sick and exhausted, and beg me to let her sleep. Elena was where she needed to be. This was her decision, and it was the right one. The professionals would help her rediscover her passion for life.

  It was going to be okay.

  My poor damaged daughter was going to be okay.

  Late in the afternoon, the phone rang. It was a staff member from Clove House. “We need you to book another airline ticket,” she said. “Your insurance company won’t pay for treatment. They say it’s not medically necessary. Your daughter is going to have to go home.”

  CHAPTER TWENTY-EIGHT

  The refusal of insurance companies to pay for care that is “not medically necessary” is supposed to prevent frivolous or fraudulent treatment. Until Elena’s diagnosis, I had never even heard the term. But psychological care is much less precise than medical care, and it can also be a great deal more expensive—particularly the long months of around-the-clock care for anorexia nervosa.

  I’m not the only family member of an anorexic who has had to hear this unhappy news. More anorexia patients than could possibly be numbered have gotten kicked out of treatment because their insurance won’t pay up. In most cases, the insurance company has stepped in and cut off treatment as “not medically necessary.” And many of those patients have gone on to die from their illness—some within a matter of weeks.

  Anorexia nervosa isn’t just a deadly mental illness. It is the deadliest mental illness of all. This isn’t just me being dramatic, either. It’s a medical statistic anyone can look up. Anorexia nervosa is orders of magnitude more deadly than other mental illnesses. It kills three times as many victims as bipolar disorder and twice as many victims as schizophrenia.

  One out of every five anorexics will die early because of this disorder.

  One out of every five!

  And the “not medically necessary” snafu doesn’t help.

  When I got this devastating phone call, it was too late in the day to do anything about it. Offices around the country were already closing. So I found out what I could from the Clove House staff, and I asked them to give me one more day. And then, all evening long, I made my plans.

  My insurance company had ruled that Elena’s care at the treatment center wasn’t medically necessary. They were refusing to pay the bill. And if they didn’t pay for it, nobody else could, either. The charge for residential care at Clove House was eleven hundred dollars a day.

  But if Elena came home . . .

  I knew what would happen if Elena came home. This disappointment would only speed things up. She would disappear into her room, and she wouldn’t come out again.

  Not alive, at least.

  That made my plan simple. It was childishly simple. There was only one thing I could do. Somehow, I had to make the insurance company pay.

  The lightness I had felt that afternoon was gone, nothing now but the dimmest of memories. Once more, my overwrought brain churned and schemed. The Clove House staff had told me that a psychiatrist at our insurance company had reviewed Elena’s case and made the “not medically necessary” decision. Fine, then I would ask for another psychiatrist to review this psychiatrist’s decision. And because I could argue that an insurance company employee couldn’t be impartial, I wanted this second psychiatrist to come from outside the insurance company.

  That’s what I would do: I would demand an outside review of my daughter’s case.

  I knew how important these plans were. I knew that it wasn’t enough to call and complain. In any bargaining situation, before going in, it’s vital to know what you want. Only then can you work toward that goal.

  Now I knew what I wanted, and I also knew I would have to back up my demand w
ith facts. So I started digging through my files. I dragged out all the paperwork from the Summer from Hell. I pulled out old lab results and new lab results. I compared blood values and EKG findings, and I put together my arguments:

  The last time this patient had to go into the hospital, she was at a higher weight. She had a damaged heart at that higher weight—maybe she does again.

  You paid those claims, so at that higher weight, you judged that the identical eating disorder treatment you’re denying now was medically necessary.

  That means this is a borderline case.

  That means it deserves an outside review.

  The plan kept me busy for several hours. But once it was complete, there was nothing to do until the following morning, when the insurance company phone lines would be open. I should rest up. I would need to be sharp. I should get some sleep.

  But of course, I didn’t sleep.

  If Elena came home . . . If Elena had to come home . . . I knew what would happen.

  So I had to stop it. It was up to me to make sure it didn’t happen.

  In the morning, while Joe was eating breakfast, I started dialing the phone. While he got ready for work, I dialed the phone. In between washing my face and brushing my teeth, I dialed the phone. And before changing out of my pajamas, I dialed the phone again.

  This time, I got an answer.

  First, there was the menu, of course. There is always the menu. And the menu has always changed, of course, so I had to pay attention. Then the customer-service representative came on the line. I answered her questions. I bided my time.

  Because I knew: You can’t rush this. They have to fill in their blanks. Until they’ve got their blanks filled in, nothing is going to get done.

  Then the representative asked, “And how can I help you?”

  Now—the moment was now.

  “I don’t think you can help me,” I said politely. “I think I’ll need to speak to your supervisor.”

  Because I knew this, too: as upset as I was over this situation, rudeness wouldn’t help. Rudeness just keeps a representative from doing her best work. The representative I was talking to didn’t mess up this situation. She only wanted to do a good job.

  I already understood what she could do. I knew that what I needed was over her head. But I also knew that she had to realize that as well. She wouldn’t transfer me until she knew what I knew.

  This representative wasn’t just a pair of hands and eyes responding (too slowly and clumsily) to commands that would come from my brain. This representative was a living human being with her own skill set and a very tough job to do. I knew from bitter experience, from her side of the desk, that many people who called this woman every day treated her like dirt even when she did everything right. And I knew that if those people didn’t like the answer they got, they treated her even worse.

  Admiration and sympathy: those were my secret weapons. People help out when they can. Everybody wants to be a hero. Everyone likes being liked.

  “Here’s the situation,” I told the representative. “My daughter just arrived at an eating disorder treatment center, under residential—that is, twenty-four-hour—care. Yesterday, a psychiatrist on your staff ruled that her care there isn’t medically necessary. I need to reach someone who can order that psychiatrist’s decision to be reviewed. I need an outside review of my daughter’s case.”

  “Then you need to speak to the insurance specialist in charge of her case,” the representative said. “Would you like me to give you that name and number?”

  “No, I don’t need it,” I said. “I got that number yesterday, and I called it yesterday—several times. I didn’t get past that person’s voicemail, and I’m not going to wait for her to return my call. What’s going on now is too important to wait. My daughter’s covered care ends this afternoon.”

  “I’m sorry,” the representative told me. “You’ll have to wait for the specialist to call you back. I’m afraid there’s nothing I can do.”

  “Yes, there is,” I said, and I said it as warmly as possible, as if this woman were gifted with a secret magical power. “I’ll be very grateful if you’ll do me the favor of transferring me to your supervisor.”

  “Just a moment. May I put you on hold?”

  “Of course.”

  Silence on the line.

  “I’m afraid my supervisor is in a meeting,” the representative said. “Can I put you through to his voicemail?”

  “No, thank you,” I replied. “I’ll be happy to hold.”

  Because, as Dr. Harris had told me years ago: Never let them hang up the phone. As long as you’re polite, an insurance company call center employee absolutely must not hang up on you. And the longer you stay on the line, the more your call skews their numbers for the day. They care about their numbers. They want to show the company that hired them that they’re handling calls in a timely fashion. So, the longer you hold and the higher you go in their chain of supervisors, the more leverage you have to get what you need.

  “All right,” she said. “I’m just going to put you on hold, then.”

  Silence on the line again.

  While I waited, I read over a few of the points I had written down. They were the advantages I had in this situation:

  Elena has had this insurance since birth—long history, know the system.

  Mental health claims are handled by a third party agency, hired by the insurance company—high expectations, play one agency off the other.

  Our policy comes through the federal government—very, very important client with a lot of clout.

  All in all, I had a lot of advantages here. I was lucky—except, there’s no such thing as luck.

  The representative broke in on my thoughts. “Are you still there?” she said.

  “Yes, I am.”

  “Then please hold while I transfer you.”

  We’re getting somewhere! I thought as I waited through the clicks. Then I waited through the rings. Then I heard the line go live and opened my mouth to speak to the supervisor.

  “Hello, this is George. I’m afraid I’m helping another customer right now. But if you’ll leave your name and member number and the reason for your call . . .”

  Now, why didn’t I see this one coming?

  I hung up the phone. Twenty-five minutes, gone. But—an important lesson learned.

  Patiently, I dialed the number again. Patiently, I pressed buttons. Patiently and politely, I danced the dance with a new customer-service representative. Getting angry at this man wouldn’t do either of us any good. I needed him to be doing his best work. It wasn’t his fault that the system had let me down.

  “I’m sorry,” he said eventually. “I’m afraid my supervisor is in a meeting.”

  Of course he was. The supervisors are always in a meeting. I don’t think it’s a lie; they’re always in meetings because they’re spending their days with customers like me. They’re meeting with the customers who need the things the regular representatives can’t do for them. They can’t meet with all of us at once.

  “I’ll be more than happy to hold,” I said. And I meant it.

  Silence again. Another ten minutes. While I waited, I read over my arguments:

  You’re getting between the patient and her treatment team. They’re the ones who need to determine her care.

  You designated this medical facility as a preferred provider. That means you encouraged us to trust their treatment decisions.

  “Are you still there?”

  “Of course I’m still here,” I answered quickly—because I knew how quickly he would hang up if I didn’t.

  “Then please hold while I transfer you.”

  And have we learned our lesson yet?

  “Just a minute,” I said, “before you transfer me. I have your name noted down as James and your employee number as 657. Now, I need to tell you something, James 657. If you transfer me and this call goes to voicemail, I will count that as you hanging up on me, and I will duly
record that hang-up, along with your name and employee number, in the complaint I file with the company that has hired your company to handle their phone support.”

  “Oh!” said James 657. And his tone of voice indicated that he was learning something, too.

  “Now,” I said, “if you’d like to check first to make sure there’s a live person at the end of that line, I’ll be happy to hold while you do that.”

  “Oh. Yes, please hold.”

  A much longer hold this time.

  Then James’s supervisor came on the line. A live supervisor! This was progress.

  It had taken forty-five minutes. But it was progress.

  Again, I explained the situation—to Stacy 112 this time. “You’re getting between my daughter and the care her medical team recommends,” I concluded. “So I’m going to stay on the line with you until you see to it that her case receives outside review.”

  “I can’t do that,” Stacy 112 said.

  “Then I need to speak to your supervisor.”

  “She can’t do that, either.”

  “Then I’ll need to hear her explain that to me herself. And then she can transfer me to her supervisor.”

  “HIPAA privacy laws forbid me from discussing your daughter’s case with you.”

  Ah! Well played, Supervisor Stacy 112.

  “I’m not asking you to discuss her case with me,” I replied calmly. “I’m discussing it with you, but I’m asking for no information in return. All I need is a guarantee that my daughter’s case will receive an outside review. Since that review isn’t medical, but insurance-related, telling me about it gives out no HIPAA-protected information. But I need that review, and I’m not going to hang up until I get it. I need a psychiatrist who doesn’t work for you to decide whether her care team is right in recommending residential treatment.”

  “I can’t do that. We can’t do that.”

  “Then please transfer me to your supervisor. We’ll see what she’s able to do.”

  Very slowly, link by link, I worked my way up the chain. One of the supervisors tried to argue with me, but I declined to argue. Another one kept me on hold for an hour. I plugged the phone charger in, kept the phone to my ear, worked crossword puzzles, and answered promptly and cheerfully each time she broke in to see if I’d given up yet and hung up the phone.