Dear Mom,
I’m sorry you have been going through such a difficult, painful time lately. It breaks my heart to see you and Dad hurting so much. I am writing to you because I have found it difficult to say what I’m really feeling when I talk with you. Please know that love is behind every word I’m writing.
I know you are convinced that Dad has betrayed you, that he has stolen your security and is hiding from you what is rightfully yours. You have asked me to keep an open mind about this, and I have listened to you, but I am convinced that you are terribly wrong. I do not believe for one minute that he is capable of doing the things you accuse him of. I have looked at your “proof,” and it does not say to me what it says to you. I think you have chosen to interpret the papers to fit into your own scenario. You have created a very elaborate plot in your mind about what you think has happened, and are able to twist anything around so it fits into your story line. I think it is highly imaginative and creative, this plot you’ve concocted—it has all the elements of a good spy thriller, but, like a Tom Clancy novel, I think that it is not based in fact. I believe you have found some compelling clues and some strange coincidences, but you have read into them things that are just not there.
I know you are following your instincts, and instincts are something to heed, I agree, but they are not always right. I have a stellar example for you. This is going to be hard to tell you, because I have not told this to anyone before except Matt, and he, only recently. You went on a similar research binge when I was sick and you thought you were following your instincts, then. Had you been truly in touch with your own instincts, and with me, you would have realized that I was prolonging my illness. Being sick was safe for me—I didn’t have to deal with the regular issues of adolescence because I was dealing with being sick; as “the sick one,” I could be a hero, I could get pity, compassion, attention, a sort of unhealthy spotlight. While I probably wouldn’t have admitted it then, I enjoyed playing that role. My x-rays were normal during my later hospitalization because I wasn’t really sick. I know this will come as a shock to you, but I went out of my way to make myself ill. I lied about being constipated for all those days—I was really pooping pretty normally—and, later, I even took laxatives a few times to give myself diarrhea so I would seem sick. I was scared of getting better, I was scared of losing the attention I had as “the sick one.” If you had really listened to your instincts, if your instincts had been true, you would have realized that I was a scared girl—I was scared of growing up, becoming a woman, scared of taking on responsibility for my own life. If your instincts were really valid, you wouldn’t have denied so vehemently that there was any psychological element to my illness. If we had come to terms with the fact that psychological problems are nothing to be ashamed of, if I had admitted to myself what I was truly feeling and doing, I could have gotten well sooner. It has taken me years to come to terms with that part of my life, and I realize now how I was running away from the truth. This is probably hard for you to hear, because as much as that time was difficult for you, too, I know that you found some meaning and fulfillment in researching various ailments and bucking the medical system—but your research was based on my own unreality.
I can’t help but see parallels to the situation you’re in now. I am impressed by the research you’ve done, and the connections you have made, but I think that they, too, are based in unreality. Please try to examine this possibility. Just as I could have spared us unnecessary concern about my health, I think that you could spare you and Dad unnecessary pain. It is unfair to consider your entire marriage a sham. I don’t doubt that you and Dad have some issues to work on together in your marriage, but instead of dealing with the issues themselves, you are hiding behind this plot you have created and are refusing to take any responsibility for the emotional and financial state of your marriage. I really think you owe it to yourself, to Dad, to me and Liz, to examine real issues, putting aside your conspiracy theory. If you could truly see how devastated Dad is by all this, I think you would know that your accusations are untrue. I love you so much and I want you to be happy. If you truly feel the need to divorce, let it be for real reasons, and not for some constructed scenario (and I hope, that if you are able to see past your scenario, you could also see that the marriage is worth saving). I hope this letter has not been too difficult for you to read. It is important to me to say what is in my heart, and I have felt like I have not been very open in our communication lately. I hope we can start fresh now, able to communicate on a real, adult level.
I love you, Mom.
Love,
Gayle
P.S. As I read over this letter, I realized that you may take the part about my illness personally, that you may think I deliberately lied to you at the time, that I caused you unnecessary pain, even humiliation. I want you to know that none of what I did was directed at you. I was very confused—as are most thirteen-year-olds—and I was not seeing things clearly. As I said before, it has taken me years to work through what happened then, and it has been the most difficult thing for me to come to terms with in my life. It has only been in the last couple of years that I’ve been able to think of myself as a healthy person. Please don’t take my confession as an attack against you—I am telling you both so I can come clean with you and to show you that things are not always as they seem. It is very scary for me to admit these things to you. Please take the admission in the spirit it is given—with love and humility. I love you so much. ♡g
Matt, Hannah, and Arin send their love too
You never responded to the letter. You didn’t say a word to acknowledge you had received it. Years later, when you started talking again about how valiantly you had fought against the medical establishment when I was sick, I tried to remind you of what I had revealed in this letter; you shot venom with your eyes and spit out “Well, that’s crazy. If you did that, you were crazy!” You refused to talk about it ever again. You continued to maintain your side of the story on camera in your documentary. But I need to talk about it, Mom—I need to talk about that confusing, painful period of my life, and this time, you can’t stop me.
NOVEMBER 24, 2009
My older kids come to meet their baby brother. Nine months ago, when I told Arin I had news as we sat in a back booth at Mi Tortilla, he guessed I was pregnant and was very sweet about it; when I broke the news to Hannah as we were driving down the freeway, she almost jumped out of the car. As soon as she sees the baby in real life, though, she melts. Both kids gaze at Asher with such wonder and love, my heart nearly bursts. My beautiful babies, all together.
We sit down to dinner, the table covered with aluminum take-out containers full of red sauce–heavy pasta delivered by the local pizza place. My mom, still in the same purple turtleneck and black pants she wore yesterday, looks disheveled and sweaty; disconcerting, as she normally takes great pains with her appearance. After we eat, she corners Arin and tells him she’ll give him a hundred dollars to drive her to her friend’s house in Carlsbad, an hour and a half away. She doesn’t tell him she’s scared to take her own car because she thinks it’s being followed by numerous Middle Eastern men. She doesn’t tell him she’s been driving as if she’s in The Bourne Identity—her own words—to escape them. He agrees—he has to study for an exam at UC Riverside, but who wouldn’t want a quick hundred dollars? When my mom goes to the bathroom, Elizabeth and Michael swoop in to caution him about her current state. His face drops.
“I’m sorry, Nana,” he says when she returns. “If we leave now, I won’t be back until 11, and I have a lot of homework.”
My mom immediately charges toward my sister. “Sabotage!” she yells, one arm in the air as if she’s rattling a saber. Michael steps in between them.
“We’re going to a hotel,” he says firmly. “You can’t come into my house and talk to people like that.” Michael’s face and voice both sharpen; I’ve never seen him like this before, my normally placid, mild husband. The papa bear in him rising up, p
rotecting his clan. It’s both terrifying and exhilarating.
My mom grabs Elizabeth’s batik scarf, the one she bought during a trip to Sausalito with an ex-boyfriend many years ago, and throws it over her head.
“You don’t know how dangerous this is for me,” she says, her entire face covered, then races out the door into a world where she thinks she’s being chased and drugged and conspired against.
For a moment, we’re all silent. It’s as if she’s pulled all the oxygen out of the house behind her.
“Fuuuck,” I say under my breath, not a word that often comes through me. We all stare at each other, eyebrows raised, reeling. Then Arin points to my arms and says, “Look! A baby!” and everyone laughs and the oxygen whooshes back in.
The rest of the night feels like a party. The kids start messing with instruments. Arin puts on Hannah’s blue Snuggie and looks like some sort of crazed monk as he plays guitar, swaying wildly in his chair. My sister and I sit side by side on the piano bench, laughing so hard, I’m worried the stitches in my perineum will pop. Then Arin starts to play the Belle and Sebastian song “Get Me Away from Here, I’m Dying,” and Elizabeth and I turn to each other and burst into tears.
“What if that’s the last image we ever have of her?” I ask and we fall into each other, the baby nestled between us.
MISDIAGNOSIS II: It Was Not Crohn’s Disease
ARLENE: The second panel is about my older daughter, who was treated for Crohn’s disease all through her teen years. From the time she was thirteen, she was thought to have Crohn’s disease, so I call this Misdiagnosis II: Not Crohn’s Disease, Acute Intermittent Porphyria. Well, it wasn’t until six years of being mistreated for Crohn’s disease by some of the world’s best doctors, um, a young woman from India, a doctor she saw when she was in her first year of college, said, “Well, have you ever been tested for porphyria?” We hadn’t even known the name, and she took this twenty-four-hour urine test.
[The camera lingers lovingly on a close-up of ARLENE’s painting; it looks kind of like she used the sponge-painting technique that was all the rage on the walls of massage studios for a while.]
Mom,
I always had a touchy stomach, but when I was thirteen and we moved from our beloved apartment across the street from Lake Michigan in Evanston to a yellow aluminum-sided ranch-style house in Winnetka, my belly took a turn for the worse; I was doubled over or in the bathroom much of the time. You would ask me not to flush—you would come in, peer at the toilet bowl as if you were reading tea leaves. I wouldn’t be surprised if you kept detailed charts.
Dr. Stein, who looked like Mr. Hooper from Sesame Street, thought I was lactose intolerant. We switched to sweet acidophilus milk at home, which seemed to help for a while and was much easier to swallow than the goat’s milk you bought at first. Then the pain and trips to the bathroom ratcheted up again, and you trotted me back to the doctor. This time, he thought I might have irritable bowel syndrome, perhaps triggered by the stress of our recent move.
“Oh, no,” you insisted. “No, Gayle is very well adjusted.”
I fought back tears. I hadn’t wanted to move, even though you had bought the house after I told you I heard it was unsafe to go to the bathroom at Evanston Township High School, which I was slated to attend the following year. Supposedly girls would steal lunch money from other girls at knifepoint, but I imagined this was apocryphal, or at least rare, certainly not reason enough to leave the apartment I loved, the only home I had known. And despite your assertions, I hadn’t adjusted well to our tony new suburb. I had taken to lying—lying about Dad’s age, saying he was in his forties instead of his sixties; lying about being Jewish, telling kids we just hadn’t decided which church to join in the area yet; lying about which level I had reached in figure skating competition, saying I could do a double axel when the best I could do was a double flip, and then only sometimes, and sloppily. Not that this made any difference to my fellow eighth graders; I was still the weird, quiet new girl with protruding eyeteeth who always had to go to the bathroom in the middle of class.
You were determined to get a different diagnosis. You learned that the “foremost authority on GI issues” (a phrase you often repeated) was at the University of Chicago, the campus where you and Dad first met. Soon we were spending time, lots of time, at Billings Hospital, a giant Gothic building that could easily serve as a haunted castle on film, at least from the outside. The inside was all gleam and squeak, all X-ray hum and alcohol fume. Site of my degradation; site of my transformation. The place where barium would be shot up my ass, and scopes shoved down my throat; the place where I would be changed, superhero-like, into a mythical creature known as the Sick Girl, you as my trusty sidekick. It was your calling—Mother of the Sick Girl. You had never been more ready for an assignment. In truth, if anyone was a sidekick, it was probably me.
When I was diagnosed with Crohn’s disease, a chronic inflammatory bowel disease, you seemed thrilled. A diagnosis with the word “disease” in its name; something serious, with no known cure; something that couldn’t be chalked up to nerves. And I have to admit, I was a bit thrilled, too.
My doctor seemed to know that. During a proctoscopy, I felt something spurt between my legs as I stood against an upright screen, the scope working its way up my rectum. It sounded like when you squeeze the last bit of shampoo out of a plastic bottle. When I pulled up my panties—which had been yanked down to my knees—there was a cold goopy mass on the cotton. It felt rotten against my skin.
“You had a little moment there, didn’t you?” the gastroenterologist smirked, one eyebrow raised.
I hadn’t felt any pleasure, but he was on to something. I never would have admitted this, but being sick had become a turn-on for me. Not a physical turn-on. More of an emotional turn-on. Maybe even a spiritual turn-on. Perhaps that goop was orgasmic in an ectoplasmic kind of way. My sad little spirit getting its rocks off. You right there with me, feeling your own crescendo of purpose.
After the diagnosis, I no longer had to ask my teachers for permission to run to the bathroom. After the diagnosis, I became a celebrity of sorts, especially once I started high school that fall at New Trier West. Teachers and popular girls visited me during my hospitalizations; my classes sent me cards and flowers, even a male belly dancer (who I was too embarrassed by to properly enjoy). I knew “The Sick Girl” was as close to the “It Girl” as I was going to get, and I relished it. I milked it. I turned myself into a veritable Sick Girl industry. I became the youngest board member of the local chapter of the National Foundation for Ileitis and Colitis, and wrote a column for their newsletter, geared toward young sufferers of the disease. When this platform felt too small, I created my own handwritten Gastro-Intestinal Gazette, which you photocopied for me, and mailed off to my handful of subscribers (obtained after you convinced the NFIC to write an article about me). I even invented a board game—The Road to a Healthy Digestive System, using a piece of cardboard as the base, then pasting a brightly color-penciled drawing of a digestive tract onto the center. I was quite proud of that drawing, which I had done while eyeing an anatomy book. The large intestine and rectum were an electric blue, the small intestine pink as a pig. The esophagus and stomach were deepening shades of purple, the liver and pancreas dark and light green.
The game was laid out like a Monopoly board, squares all along the edges that said things like, “Take your Prednisone—move ahead two spaces,” or, “Sigmoidoscopy—go back one space.” You could land on a space where you had to pick up an “Upper GI” card, which offered trivia questions about the upper digestive tract, or you could land on a space where you had to pick up a “Lower GI” card with true/false questions about lower bowel function. You were convinced the NFIC would immediately want to mass produce it and I’d become a famous game magnate.
I carefully packaged the game and the cards in a shirt box and brought it with me to my next appointment at the gastroenterologist’s office. You and I both knew it was going
to wow the doctor, knock his socks off.
When I showed it to him, though, he sighed.
“You’re spending way too much time thinking about this disease, Gayle,” he said. “You need to focus on your real life.”
I was shocked and insulted that he would say such a thing. The disease was my real life. It had become my identity, my calling card, my raison d’etre. I packed the game back up and held it close to my chest.
You shared my indignation. You sent letters about my game to all the major toy companies, all the G-I related foundations, all the big research hospitals. You talked to a relative who used to design Cracker Jack toys and had produced one board game with Milton Bradley—“Feeley Meeley” (subtitle: “the game that gives you a FUNNY FEELING!”) where a player draws a card, then reaches blindly into a box and finds the object on the card through touch alone.
“This is a guaranteed money maker,” you wrote in your pitch letter. “Over a million people have Inflammatory Bowel Disease in this country, and they want a game that they can relate to.”
No one jumped on the idea, which confounded us both.
“Don’t let them stop you,” you assured me. “Nothing’s going to get in our way.”
I wanted to believe you. But something did get in our way, or at least threaten to. I started to get well. After a year of medication that gave me a moon face and hairy arms and the constant taste of metal in my mouth, I started to get well. Less pain. Fewer trips to the bathroom.
The Art of Misdiagnosis Page 7
