CHAPTER 11
One Day I’ll See My Privates Again
When I started the Big D, my doctors warned me that I would retain water and should expect a little weight gain. Weight gain? What happened to me was more than packing on a few pounds: No one warned me that I’d get stuck in the doorway of Casa del Ratner. By the fall of 2005, I had ballooned to 220 pounds.
It took me a while to realize that I had gotten so enormous. There were little, very subtle hints: The fact that I had to move up five sizes in jeans. My new potbelly, which looked like I’d swallowed a watermelon. My thick swollen ankles. Even the shirts, which I now had to buy in a size 17.5, should have been a giveaway. But in my distorted brain I thought that if I could get my hair blown out and wear a dark baggy jacket to cover my distended stomach, I’d appear slim.
At the end of August I did my big comeback interview on Entertainment Tonight. I nearly flatlined when I saw myself on that screen: I was so bloated, so loaded down with double chins, that I didn’t recognize myself. Whoever that person was on television, he was a junior rhino, and not even a raw silk Comme des Garçons blazer could hide that distorted body.
My vanity came flooding back with a vengeance.
People were very kind. “I saw the interview,” people would say. They would hesitate, and look at me with pitying eyes. “You look like you’re…getting better.”
They were lying. This is what The Kidney Makeover did to my body: My legs turned into tree trunks. When I walked, my blubbery thighs slapping together sounded like elephants humping. My face ballooned up until it was a perfectly round moon. My signature skinny arms still looked like dental floss, but my stomach was so rock-hard, distended, and swollen, that I was this close to applying for a Pea in the Pod credit card. I had nightmares about my boss asking me to strap my new man-breasts down with a size 38DDD bra.
The Kidney Makeover did have its upside. I’d always had this thin horselike face and suddenly I had big fat rosy cheeks, like a Gerber Baby. And I finally had a derriere, for the first time in my life. I wasn’t born with a butt. I’d thought about buying one on the Internet at buyabutt.com, but I could only afford one synthetic cheek—and now, suddenly, I had back. It was a juicy, protruding, hot, fat, meaty, no-messing-around caboose. I was so proud of my multilevel, walks-into-the-room-and-gets-wedged-in-a-doorway, heaping kiss-my-ass buns. I will tell you all a secret: When I was taking my post-surgery walks around Cedars-Sinai I would keep my hospital gown untied just so I could show off that boot. I suddenly understood what it was like to be Beyoncé.
Seriously, though, the weight issue hit close to home: I have a long hidden history of weight struggles. If my body issues were a Montel episode, it would be titled “I Was A Teenage Manorexic.” When I was sixteen, I thought I had to look like Iggy Pop. I knew I was never going to look like a blonde-haired, blue-eyed, golden-boy jock with a jawline of steel. But a quirky, emaciated rock star? That I could do. I had already been ostracized for being the school freak. I wasn’t allowed anywhere near the popular circles. The Goths were willing to take me in, as long as I went on the Goth Starvation Diet. To be a Goth you had to have a 26-inch waistline.
So I stopped eating. My one meal of the day, eaten at lunchtime, would be a piece of melba toast and a sliver of mozzarella cheese. And that was it. All of the sudden I went from being powerless to feeling powerful. Every day, I climbed on the scale and watched my weight drop. It was absolute control. It became a really sick game: I would delight in how long I could go without food. Hunger was the enemy, and I scoffed at it. Hunger was no match for me. What a triumph.
I started the beginning of my junior year weighing a healthy 160 pounds. Nine months later, I weighed 132 pounds (on a 6-foot frame) and had become the scandal of my community. I was the walking dead.
There were epic battles with my parents. My father would try to physically terrorize me into sitting down for dinner. My mother would just weep. When they forced me to eat, I started taking laxatives, and then vomiting. My mother could hear me gagging in the bathroom after meals, so I would turn the tap on to mask the sound. I thought that my contribution to the world would be a technique to vomit silently.
But the community was speaking, and once I was the buzz of the town, it was all over. We never went to a professional, because in a dysfunctional Canadian-Romanian Jewish family, you don’t go outside for help; but somehow—with bullying and tough love—my parents eventually made me eat.
Not long after I was diagnosed with PKD, I suddenly recalled my teenage struggle with manorexia. It was like a knife went through me; I got goose bumps all over. I thought, Maybe this is a result of when I had food issues when I was sixteen, and took all those laxatives. OH NO! IT’S MY FAULT. I was panicked at the idea that I had done this—all the suffering, everything that I was going to lose—by my own hand, because I had been a fool as a teenager and didn’t eat for nine months. I lacerated myself, tore myself apart for being so stupid.
Eventually, my doctor told me that I was being irrational. “It’s genetic,” he said. “You didn’t bring this on yourself.” PKD was in my blood all along, along with the gene for thick luxurious hair.
My parents, however, refused to believe this. “How did you get it?” my mother asked.
“It’s genetic,” I said. “I got it from one of you.”
“Nononononono,” my mother said. “Not my side of the family. It’s impossible.” She looked at my father, instead. My mother has always romanticized the notion that she married way beneath her; so of course PKD must have come from his peasant genes, his plebeian blood.
My father backpedaled. “Nononononono, it’s not my family, Amelia! It’s from your side.”
“Nononononononono!” I left them there to bicker. I think my father slept on the faux-Oriental divan for at least two weeks.
As an adult, I had given up on the laxatives and melba toast, but I was still obsessed with my weight. In the years before I was diagnosed with PKD, I was fanatically concerned with fitting into body-hugging clothes. There’s a sickness in high fashion: Stars starve themselves to fit into size zero samples, and men’s clothes are cut for six-foot tall Nordic models who are nineteen years old with miracle metabolisms.
At my skinniest on the red carpet, I weighed 145 pounds. I thought I looked like the spawn of Mick Jagger. But really I was the walking near-dead. There’s a photograph of me from the Oscars in 2004, before I got ill that I’ve looked at a lot lately. I’m wearing a silver satin tux, and I look so hollow and sickly. It made me see how twisted my perception of myself had been for the longest time.
Now, after all those years of being ultra-thin and wearing anything I wanted, the karmic fashion police had finally come around to get me for back payment. Now that I was taking steroids and doing dialysis, my skinny designer clothes had gotten so tight that I thought they would have to be donated to the Fashion Critics Hall of Fame. I could hardly breathe in them. But I still tried to wear them anyway. I thought the tighter my pants were, the more the fat would be compressed. It didn’t work. In one last attempt at vanity, I finally reached into the back of my closet, unlocked the safe, and pulled out the ultimate emergency fat-busting weapon in my arsenal: A girdle. Wearing a discreet Ralph Lauren pith helmet and a to-die-for khaki jungle suit, I had slipped unnoticed into the Macy’s women’s undergarment department. I was dizzy with confusion as I tried to decipher the differences between a Nancy Ganz Hip Slip and a Spanx Power Panty.
An older woman in cat glasses and a red beehive came up behind me. “Ahem,” she cleared her throat. “Can I help you?”
“I have an ailing aunt. It’s her eightieth birthday and the retirement home is throwing a dance party. And between you and me, hon, her belly is the size of the Domican Republic.”
“Oh dollface,” she said. “Thank God you’ve come to Irma. What she needs is the Turbo-Charged Ionic Belly Vise. Trust me, she’ll look like Petra Nemcova.”
I wore that Belly Vise underneath my white ev
ening jacket and black tux pants at the Emmys soon after. Irma was wrong. I was not as lithe as Petra Nemcova. Not only were my air vents so constricted that I almost fainted into Kiefer Sutherland’s arms, I still looked like my own gated community.
At home, when I was by myself, I would disrobe and look in the mirror from every angle. I spent hours in the bathroom, just gazing at my grotesque form. I was losing the battle of the bulge. I had a primal fear that this was something I was going to have to come to terms with: I was terrified that I would never be slender again. As my stomach continued to swell, day after day, I started having panic attacks that I would never see my privates again—at least, not without a hand mirror.
My response: It wasn’t eating a healthy diet or exercising more. No, instead, I discovered sugar. In the dark days after losing the kidney and going on dialysis, sugar was the only thing I had in my life that was making me happy. It filled some sort of void. It became my crutch.
I would make trips to my local overpriced coffee emporium to get the triple grande sugar heroin-in-a-cup surprise delight with whipped cream. I’d have about three a day. I’d eat boxes of designer chocolates, cartons of milk chocolate truffles, buckets of ice cream. Even my food-obsessed mother grew concerned when she came to visit. “You have to stop,” she would tell me, although that didn’t mean that she stopped baking me the cupcakes that I craved.
Sugar was my form of rebellion against a life full of restrictions. I’m a man who hates rules, and here I was in a medical prison, forbidden to drink alcohol and smoke cigarettes. My schedule was filled with pills and machines. Enter the sugar: The chocolate rushes became my way of acting out. I can speak from experience that a box of Godiva was more powerful than a morphine drip and 30 Vicodin mixed into a latte. It sent my whole body into overdrive with sugar tremors.
I knew that sugar was bad for my physical and mental health. I was already about to explode from the drugs and dialysis and weight gain; by adding sugar addiction to steroids I was entering dangerous territory.
The tipping point came when I was searching for clothes for another awards show and realized that I had become a second-class citizen. I went to stores and felt invisible: “We don’t carry higher than size 44,” the salespeople would tell me. “Our clothes aren’t cut for your type of body,” they would sniff. Luckily I had padding, because I practically fell on my ass with shock.
I felt discriminated against and victimized. I’d never been so humiliated in my life. It shook me up. Initially, I was fixated on the number: I had to be a size 40 suit again. But eventually I realized I was thinking about losing weight for the wrong reasons. It made me take a long hard look at myself and realize that I had to lose weight because I felt bad, physically. I was dragging, easily out of breath and my doctor said that with my condition, I was more prone to diabetes.
I didn’t go on a special diet: Dr. Jordan just said, “You need a sensible, heart-healthy plan.” For him, that meant lean meats and vegetables, watch the salt and sugar, and get lots of exercise. I signed up with a personal trainer, who tortured me with exercise balls and push-ups ad nauseum three times a week. Since I have a Cleopatra complex and believe that I should have everything delivered to me, I signed up for an organic food service to bring me my meals. I cut out wheat and dairy almost entirely.
I never dreamed I’d be thin again. I thought that was too much to ask for. But after a year of dieting, giving up sodium and sweets and late-night snacks, eating organic woodchips and alfalfa sprouts for dinner, exercising and power-walking two miles a day, I knocked off a considerable amount of weight. For the first time in my life, I lost weight the sane way—and it stuck.
But it was a bitter victory, because when I lost the weight my butt also took off without even leaving a Dear John letter. Once again, I was buttless. Bye-bye backside.
CHAPTER 12
Mr. Bloated Red Carpet Fancy Pants
It’s the end of August, and I am relaxing at P. Diddy’s dinner party at the Setai Hotel in South Beach, Miami, before the MTV VMA awards. The lobby has been transformed into a chic Zen den—it’s very Polynesian monastary. I think I’m leaning on a mahogany column when it suddenly moves, and says, “Hey sexy”: The pole is actually Paris Hilton, who appears to be suffering from an advanced case of pre-melanoma spray-tan poisoning.
I am wearing a white suit with a fuschia shirt and a white sequinned tie. This outfit was supposed to show people that Cojo Is Back! But it’s a lie. I’m still a complete mess. I believe that white is always the freshest and most glamorous color choice, but I’m forty pounds overweight and feel almost as big as the Gulfstream GV that flew Diddy into town.
I’m bloated beyond recognition from steroids. On my way to pay my respects to P. Diddy, I’m worried that I’ll have to hand over my dental records for him to recognize me, but even through the folds of flesh and the pudgy face he remembers who I am: “How you doing, Cojo? Good to see you!” he says.
I slip out early, before midnight, when the party is still just getting started, and head back to my hotel room. I take off the white suit and the fuschia shirt, exposing the tube that has been sewn into my stomach, and put on rubber gloves and a face mask. And then I start setting up my dialysis machine. There are sealed bags of solution that need to be opened in a particular way, sterilized to prevent infection, and warmed so that the cold fluids won’t shock my system. Three IV drips have to be set up—two for the dextrose compound that will go into my stomach and another for the waste that will come out. New tubing has to be sterilized and attached to my stomach. My beautiful room at the Ritz is piled high with boxes and bags of fluid.
The peritoneal dialysis machine sits on the nightstand. I turn it on, plug myself in, climb into my bed and then drift off to sleep. In the lobby of the Setai, P. Diddy is still swigging Cristal with Pharrell. But there will be no bubbly for me tonight. Instead, for the next nine hours, my body will alternately be pumped full of chemicals and then drained like a sewer.
Competitive me, I had attended peritoneal dialysis school all through July with a vengeance, determined to be my instructor Doris’s star pupil. Doris was my drill sergeant: A curmudgeon with a heaving breast and a personality of steel. Underneath, she was all warmth, but I’ve never been more afraid of someone in my life. “Peritonitis is our enemy!” she would trill, as she hovered over me and watched me struggle with the tubes.
In high school, I wasn’t exactly an A student. I would skip class to go to Brown’s Shoes in Cavendish Mall; I’d visit the men’s section and just subtly, accidentally…my goodness, how did I find myself in the women’s section looking at all the strappy stilettos? But this was not like that. Whatever gray matter I had was devoted fully to the process of learning peritoneal dialysis: This was life or death, and it required 1,000 percent laserlike focus. I was going to be Phi Beta Kappa Kappa Kappa—the ultimate graduate—or nothing at all.
I’ve always been the Sultan of Squeamish. I would hold my tinkle on an airplane for five hours rather than brave the horrors of an airplane lavatory. When I got my ear pierced, I lost my lunch. But I was getting over it, big time. When you have no choice but to fight for your life, and that’s simply the cards that have been dealt to you, you have to get over it.
Still, the first few times I tried peritoneal by myself, I was terrified: I had my life in my own hands. And I was bad at it—I kept screwing up. Doris’s instructions came in a cheap plastic blue binder, which was my bible: There were thirty steps in it, printed up on color-coded laminated sheets. Important steps were in blazing red—sterilizing the end of the tube that had been sewn into my stomach, removing any air bubbles that might have compromised the dextrose cleaning solution. There were bags and tubes everywhere, and I had to be meticulous about making sure the right tube ended up in the right solution. If I did anything wrong, an alarm would go off and the machine would flash warning instructions. Panicked, I would call Doris for help, even if it was three o’clock in the morning.
By mid-Aug
ust, six weeks after my infected kidney had been removed, I had been doing peritoneal dialysis at home for a month. I still felt overwhelmed and petrified every single minute I was on it, but I was starting to live my life again, slowly. I would go to the Entertainment Tonight stage to work. I went back on the Beverly Hills ladies-who-lunch circuit, where I would arrive with freshly done hair and impeccable nails, and could always be counted on to deliver the latest dish. But my disease refused to leave me alone.
One afternoon, I was clinking crystal glasses with society swells over endive salad at a Diane Von Furstenberg lunch, flushed with happiness that I was out again, a thousand light-years away from the disease, but afterward, after waiting by the valet stand in the blazing sun for twenty minutes, I fainted from heat, exhaustion, and dehydration. A size–0 society matron in a printed wrap dress that matched her liver spots somehow managed to throw me over her shoulder and carry me inside the cool shop.
Despite such minor humiliations, I insisted on getting back out in the social scene. I wasn’t the same person anymore. I was weak. I was straining to be the life of the party, like I didn’t have a care in the world. I wanted so badly to appear normal, so that no one would treat me differently. I had too much pride to be thought of as sick. So no one heard about my nightly dialysis procedures. No one had to hear about the pain I still dealt with, or the indescribable aches, or the fainting spells, or the dehydration.
I love being a crybaby. Give me any chance to whine and complain, and I’ll take it. As the former captain of the Beverly Hills Whining Squad, I thought that with kidney disease, at least it would give me a license to whine away. But the ghost of Jackie O texted and the message said, “Steven, decorum is everything. Silence is the most noble thing.”
Instead, I would be at some chic dinner party yakking away with Kirsten Dunst and sharing lemon-hummus dip with Penelope Cruz. And then I would come home and be slapped once again in the face with reality: Even though I just wanted to moisturize and fall into bed, I had to spend half an hour sterilizing and heating and setting up tubes. Would it go smoothly that night? Would the machine alarm go off? My nights always ended with fear.
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