Dr. Cohen promised to help me get back to my normal self, and after months of intense therapy I regained a great deal. I was able to tap into my emotions. I stopped feeling so numb and disconnected from my environment. Early on, I described to her how I felt like a cardboard cutout, with no insides. I didn’t think I really existed, like I told the police when I called 911, that I wasn’t a person. I truly believe she made me a person again.
I still talk to Dr. Cohen three nights a week, at least. I put my complete trust in her. She knows when I’m withholding feelings or information, even if we’re having a phone session. Dr. Cohen told me never to pretend with her and that it was okay to be sad or have trouble and to bring all of my emotions to her. So I did and I still do, and I often find our sessions too short.
sixteen
Ten Things We Learned About Eating Disorders
I spend a lot of time at the Y. The more stress, the more rowing. One Saturday afternoon, a tired, gray-haired man settled a disabled teenager onto a treadmill, showing her what to hold on to and what buttons to push. He looked like he could’ve been her grandfather, but he was probably her father. The strain of caring for her may have put years on his face. While going through my strength-training routine, I spun out a colorful fable about his family, what they were living with, how it made our plight seem trivial. I felt sad for this family and yet, incredibly, a little envious. Their pain had an obvious cause, a severe physical disability. Of course this heroic man looked exhausted. Ned and I were slackers in comparison.
Parents with seriously ill children often follow an unwritten handbook of public decorum—of question and response. Mostly we act as if life is normal but we walk around with our guts clenched, fearing the next phone call, tuned to the “fight” setting of the fight-or-flight instinct. On the phone and in person, we feel out our contacts for their capacity to hear a complicated, worrisome story that may not change and has no visible end.
Sometimes, instead of “Fine” in response to “How are you?” I start talking. The news isn’t easily packaged. Soon I get lost and stumble around for an appropriate way out, embarrassed that I haven’t thought to ask anything about them. But sometimes I don’t want to hear their news, good or bad.
We gauge how helpful people really can be right then, by how much work it will be for us to fill them in and deal with their reactions. “Fine” is often the best conversational tool. Many people want to be helpful, but we don’t know what to have them do. Then the burden is on them, the would-be helpers, and we all feel bad. They are like workers at a soup kitchen that gets slammed by enthusiastic volunteers at Christmastime. The volunteers end up standing around with nothing to do or trying to socialize with needy people who may be embarrassed to be there.
We go to events about our child’s illness. They can be like mental health trade shows, where you cruise the booths and pick up pens with organizations’ names on them, maybe find another doctor or treatment to try. At the September 2007 kickoff event of the Eating Disorders Resource Center in San Jose, there was a wine and cheese reception followed by experts giving talks and panel discussions. Melissa and Don Nielsen, founders of the well-respected National Eating Disorders Association, spoke movingly about their daughter’s fourteen-year battle with anorexia. “She took pride in being the Queen of Anorexia,” Don said. Exactly! Ned and I thought. Lisa acted that way, too. This was between Lisa’s two worst episodes. We didn’t know she would soon take pride in regarding herself as the worst patient Stanford Hospital ever had. Don Nielsen continued, as if speaking directly to the Himmels, “Each hospital made her worse, and we tried dozens. Everything we did was wrong.”
Bingo again. Maybe every parent in the auditorium felt this way. Eating disorder parents, like the patients themselves, can get to thinking that if the sun doesn’t come up, it’s their fault. The encouraging news was that Nielsens’ daughter got her life back. She is now married, has two children, and works as a therapist. What they finally did that wasn’t wrong, but that actually worked, was to give their daughter an ultimatum: Go in for long-term care or get no contact from us, and no support.
The first time Lisa seemed to have recovered, when she was a sophomore in college, people would often ask, “What helped?” We didn’t know, except that around the time Lisa turned twenty, something clicked and she decided she wanted her life back. We latched onto the UCLA experience as a turning point. When she refused to go to that treatment program, we were paying her tuition and supporting her in every way, but we didn’t say, like the Nielsens, “Go in for long-term care or we can’t help you anymore.” We didn’t say, “Get better or go to UCLA.” She just decided, “It’s a locked facility.
I don’t like the director. I’d have to miss school. I’m not going.” A few months later, she got a job, met her boyfriend, moved into a new house, and was engaged in her classes.
Our Lisa was back! Why mess with success? For a while we insisted that she continue in psychotherapy, but she hadn’t made a good connection with either therapist in Santa Cruz, was blowing off appointments, and didn’t want to try another one. Professionals call a phase like this a “flight to health,” meaning the patient hasn’t dealt with underlying issues or followed a treatment plan, but just wants to fly away and try to have a normal life. We were worn out, and naively hoped that acting healthy could become being healthy. It was a false start, but Lisa did have almost three manageable years before crashing again.
In the end, what helps? Here are ten things Ned and I learned we needed to deal effectively with Lisa’s eating disorders:
1.
One professional who really relates your child.
For Lisa, a psychoanalyst who specializes in eating disorders turned out to be the one. We were as surprised as anyone, but right from the start, when Lisa was trembling from medications and barely spoke, Dr. Cohen conveyed understanding and hope. And soon we saw progress. It’s been very bumpy, but Lisa has pretty much traded in the protective rigidity of anorexia and the oblivion of bulimia for a real life. That is a huge success.
As we discussed in the previous chapter, experts on eating disorders run the gamut of credentials and degrees, including pediatricians, psychologists, psychiatrists, nurses, and nutritionists. In addition, their theories and practices range from dialectical behavior therapy, based on a concept that everything is composed of opposites, to structural family therapy, focusing on how family members communicate and solve problems. What matters is that the expert listens in a way that makes your child feel heard and talks in a way your child understands. You’ll know it when you see it. Most important, this person should be someone both you and your child trust. The ED industry is only too willing to take your money. Progress is so slow and full of setbacks, parents have to wonder if even the most highly regarded experts know what they’re doing.
But first, you have to get your child to go. Teenagers tend to resist any kind of help, and with young adults you may have zero leverage legally. If your child is over eighteen and refuses treatment, you can withdraw support and force the issue, knowing that the risk is finding them on the street or dead. (A recommended book on the subject of when to force treatment is Xavier Amador’s
I Am Not Sick and I Don’t Need Help!
Vida Press, 2007.)
2.
Your village.
Our nephew and his wife camped at our house. When we were away and Lisa was hospitalized, our sisters flew in and organized the troops, which included my mother, my aunt, and our cousins in the Bay Area, Chicago, and Portland. Friends, neighbors, and colleagues circled the wagons.
There may be an overload of advice. Often it is best to say thank you and be on your way. It’s great that your hairdresser’s son had success with Abilify for bipolar disorder, but that may not be relevant to your situation. Remember that they are only trying to help. Other friends and family will make you dinner, force you to go to a movie, hold you together. They may also be the best source of referrals—we found Lisa’s doctor through a friend—and backup—when Lisa ran away, a friend helped us find her.
A family support group may also help, but it needs to have a skilled leader, more like a teacher than a physician. Stressed parents and siblings easily go off topic, dominate the discussion, or hold back when they need help the most. A good facilitator makes sure group members get what they need, whether it’s a resource, referral, or empathy.
3.
Books about other subjects.
Whatever gives you comfort, read it again and keep it close. During Lisa’s runaway month, someone gave me Jumpha Lahiri’s collection of short stories,
Unaccustomed Earth
. Lahiri writes about being the adult child of aging parents. The stories resonated for me, in a completely different situation with adult children. I read this book of stories twice.
I also returned to
The Runaway Bunny
, one of Lisa’s favorite books as a child. It is the flip side of author Margaret Wise Brown and illustrator Clement Hurd’s hypnotically calming
Good Night Moon
. When the little bunny comes up with ever-more fanciful plans to run away from home, his mother doesn’t panic or get angry, but keeps saying, basically, Raise the ante all you want, I’ll be there for you. “If you become a sailboat and sail away,” said his mother, “I will become the wind and blow you where I want you to go.” All of this, “Because you are my little bunny.” These lines soothed me, helped me cling to a belief that whatever was tormenting Lisa, whatever her hungers, Lisa still carried this feeling.
Of course, we also read books about eating disorders.
4.
Exercise.
No thinking, just doing. It’s hard to ruminate while rowing. Find an exercise that gets your heart going, or at least gets your mind off its disaster movie. Some people swear by Bikram yoga, an hour and a half of sweating that, like rowing, includes your whole body and pretty much excludes thought.
Since Lisa became anorexic in high school, my exercise regimen has ramped up, from the treadmill to the elliptical trainer, weight-training, and rowing. At the worst times, I felt if I could just lift the same weights as yesterday, or even add a little, I could handle whatever trial was coming next. I loved the feeling of warmth in my muscles and my Michelle Obama arms. As a collateral benefit, our nearby YMCA is the place where we find out all the neighborhood news.
5.
Laughter.
Science has shown that humor helps patients relieve stress and heal. The same is true for caregivers and families, but if you’ve just spent an hour weeping into a pillow, good luck getting up and finding something clever. I often felt our situation was too precarious for laughter. Movies and TV shows that once seemed funny did not do the trick anymore, and often made me feel worse. As in, “I used to laugh at that dreck? How pathetic. Nothing else makes me laugh, either. I have completely lost my sense of humor.”
It wasn’t true, exactly. I found other dreck to make me laugh, including flings with
Desperate Housewives
and
What Not to Wear
. Also, I am married to someone who makes me laugh.
6.
Work—paid or volunteer.
The tendency to obsess about your child’s illness is overwhelming; work is a great diversion. It was easy to lose myself in a story or momentarily forget my troubles as I discovered a new food or restaurant. I also appreciated the time I was able to participate in the outside world—a world beyond illness. During Lisa’s first descent into anorexia, I kept reviewing restaurants and writing about food for the
Mercury News
. Four years later, when she crashed again, the media world had darkened. But I had taken early retirement from a newspaper I loved and was able to devote more time to Lisa. We were fortunate to have health insurance from Ned’s work, so I was able to write this book and pick up freelance assignments.
I volunteer at a local elementary school twice a week, in a program for English-language learners. Not only does it give me something to do besides worry endlessly about Lisa, if not the economy, I get to help somebody in a concrete way. One year, my third-grade student started in September at a 2.3 reading level (equivalent to the third month of second grade) and in June scored at 4.6. He did the best out of the program’s ninety students. At some point during that year, I could see the joy of reading clicked with him. Even when I felt like a failure in my relationship with my daughter, working with these kids gave me a sense of purpose and accomplishment.
7.
Early intervention.
I recently met a woman who did intervene early, and I admired and envied her. She happened to be talking on the phone to a friend one day as her fifteen-year-old daughter measured out portions of food. The daughter had become a vegetarian, and then started measuring portions to the nth degree, which the woman mentioned in an “isn’t this funny” kind of way. Her friend said no, this could be serious, take her to the doctor right now. The pediatrician recommended a nutritionist that the girl saw, often unwillingly, for a year. She never developed an eating disorder.
Unfortunately, we had no such aha moment with Lisa. Ned and I didn’t recognize the problem until it was full-blown. Even then I’m not sure we would have found the right help. Were we oblivious? In denial? Maybe, but it isn’t easy to decipher the difference between actionable behavior and the normal hormonal hit-and-run of puberty and adolescence.
Your child was walking around the house singing yesterday, but slamming doors and moping around today? Does that mean she’s bipolar? Are moodiness and monosyllabic answers signs of an underlying problem, or typical of teenagers? You can come barging in, and the effect is too much too soon, or you can hang back, keep a watchful eye, and do too little too late. As NEDA’s Don Nielsen said, you often feel like everything you do is wrong. It is better to jump in, ask questions, and offer help—and risk overreacting and alienating your child—than to risk a downward spiral into severe depression or severe eating disorder. It would be great if parents could always spot the warning signs and save the child, sparing everyone a lot of agony in the moment and years later when we mull over our many mistakes. Ned and I do occasionally rewind that movie, but not so much anymore. It’s useless. Don’t do it. You love your child and you got help as soon as you were able.
8.
Getting out of bed.
I sometimes wake up and study the way the pillow forms a canyon landscape with the sheet and blanket, or how the quilted blue comforter looks like a calm ocean. I could lie there and study linen shapes all day, or doze a little longer, and maybe some problem will have gotten better without me. But I know I have to get up and do something, if only to stand around and worry until I get to sit down or go back to bed. Otherwise how will I ever know about the improvement?
9.
Vacations and trips.
Take them. Lisa still resents that Ned and I went to Europe when she was clearly very sick. We still second-guess that decision. But I don’t know what we would have done to change the outcome had we been there. Would she not have ended up in the hospital, where at least she was safe? Impossible to know, but what I do know is that our canceling the trip would have made Lisa feel guilty and given her another incident to prove what a bad person she was. In this book, we focused on that trip, and the weekend that forced a choice between her high school prom and my James Beard award, because they highlight our most exquisite moments of torture. This may leave the impression that Ned and I were constantly jetting off to Europe and New York, leaving a desperately ill daughter to fend for herself. Well, no. Every time we went anywhere, we assembled a multifaceted contingency plan and spent hours with Lisa on the phone in transit and at our destination. At home, we canceled events at the last minute if Lisa seemed fragile. Now I think we did that too much. Lisa needed to grow, and we needed to recharge. The unrelenting pressure a child’s illness places on parents physically and emotionally is tremendous. Sometimes all you can do is take a recess, so that everyone gets some fresh air. You do have to take care of yourself in order to take of your child.
10.
Eating well.
Bodies are nourished and sustained by good, healthy food. We have to eat, and eating is fun in all kinds of ways, as I have learned in my life with Ned. Lisa and I disagree about how much my job and our food-centric family life contributed to her eating disorders. I suspect a bit of defensiveness and guilt on my part (and Ned’s), and a bit of immaturity and the need to blame on Lisa’s part. But we are gradually loosening up our fighting stances. We can even enjoy eating together again.