“Okay,” I said, and got out a pad of paper, anxious to be part of the solution, “so how do we fix this? Pills, surgery?”
“You need a phlebotomy.”
“You have a lobotomy.”
“A phlebotomy,” he said. “You get a quart of blood taken out periodically and it helps lower the iron levels.”
As it turns out, “phlebotomy” is a fancy term for having blood taken. Though when it’s done at a heavy rate to cure something, it’s a fancy word for leeching. Where was my pill? What century was it again? I was prepared to have a mysterious and glamorous amount of prescription bottles in my medicine cabinet, but this was flat-out inconvenient.
“How often?”
“Usually twice a week.”
“That’s not so bad.”
“For a year. If you were a man,” he added, “I’d tell you to cut yourself shaving.”
“And you think I have this thing?”
“I do. But I can’t be sure. We need to retest you. You’ll go see Dr. Spellman.”
I hung up the phone and found myself lifting my hand to my face. I imagined it fading away like Michael J. Fox’s in Back to the Future. I wiggled my fingers as bumper sticker–worthy slogans adhered themselves to my thoughts: “Blood. It’s just everywhere.” If I had broken my leg, that would be one thing. Isolated pain below my waist. But there was no escaping the mobility of liquid. I googled my new disease. There are lots of support sites, including one that sounded like a death metal band (Ironoverload.org), but the distinctly unsupportive CDC was my favorite. The “. gov” sucked me in from the beginning with the promise of seriousness and the possibility of espionage somewhere down the line. The CDC leveled with me. That last C stands for Control, not Cure, and certainly never Cuddle. I learned this the hard way.
Q: What can happen as a result of hemochromatosis?
A: Liver cancer, heart disease, infertility, diabetes, and impotence.
Q: Is hemochromatosis fatal if left untreated?
A: Yes. Yes, it is. You will be quite dead.
Q: Is it a rare and royal pain in the veins in the meantime?
A: Yes. You’re in for it. This would all go much smoother if you were a cutter or a member of the hemophilia-prone bourgeoisie.
I closed out of the Web and rolled back in my chair. I breathed a giant sigh of relief. In a way, I had been waiting for this since birth.
I come from a broken home. My sister has Crohn’s disease, for which she has been hospitalized. She also has heart problems, stomach problems, inner ear problems, a bad jaw, and a worse ankle. She went to many doctors in her teenage years, more than one of whom suspected hypochondria and suggested she see a psychiatrist, which she eventually did. Aside from the basic neurosis that comes with being a type-A personality in a grade-D-functioning body, there’s nothing wrong with her. There’s nothing that connects her dots—she’s just broken. Once she fell and twisted her foot so hard, her Achilles tendon came loose and shot up into her leg like a rubber band. They had to cut open her calf to loop it back down. She got the ankle problems from my mother, who has scoliosis so severe it’s resulted in pinched nerves, bone grafts, and migraines. During one of her more major surgeries she had two-foot-long metal rods inserted into her back.
The practical effect of all this on me has been that I am very comfortable with hospitals. I don’t mind their veterinary smell or their big metal elevators or the scent of latex dust or atriums of any kind. The one thing I do mind is how glaringly healthy it all makes you feel.
One of the symptoms of having loved ones with multiple illnesses is guilt. There had never really been a whole lot wrong with me that was worth writing home—especially my home—about. My father and I tended to fly more or less under the disease radar. A flu there, a root canal here, but basically we kept our chins up, our mouths shut, and our urine clean. I perceived my secret desire to take one of my sister’s ailments on for myself as normal. As an adult, I wanted one of my sister’s sicknesses to unburden her. As a kid, my motivations were significantly less complex. Though my parents were almost freakishly evenhanded with us, I wanted a bit of that get-out-of-jail-free sympathy thrown my way. For me it was always, “I’m sorry, I know you have the sniffles, but you have to go to school today.” For my sister it was, “Brains leaking out of your ears again, darling? Let’s get you some tea and see if there’s anything good on TV.”
It’s strange, therefore, that I wasn’t particularly into playing sick as a child. Perhaps I knew I couldn’t compete. Just once I held an electronic thermometer in close orbit to a lightbulb and when I found that to be ineffective, I put the thermometer in the microwave for a reasonable number of seconds. I brought it to my mother lamely and dropped it in her hand, like a cat releasing a dead mouse. The metal end of it burned her palm.
“What happened to this thing?” she asked, poking at the 2,057-degree screen.
“I think it broke.”
“Did you try to use it?”
Yes, I thought. Not only did I try to use it but it seemed grossly obvious to me that I had stuck it in the microwave.
“Nope. I pressed the little button and that’s what it said. See?” I held the little stick with her. “It won’t go back to zero.”
I coughed, a neat cough like a chipmunk with clear little lungs. “I don’t feel good.”
“It won’t even turn off,” she said, holding down the Reset button with her nail.
“I think we should return it.” I coughed again.
That was my first and last significant attempt at crying wolf. Though I have never been very interested in pity as a form of affection, seeing my sister brave her way through illness after illness, I have been tempted by the idea of a brave face. The kind of admiration my sister gets is a form of pity as well. It’s like good cholesterol vs. bad cholesterol. She gets the good kind. It’s a special brand of reverent compliment that is whispered behind the back, as in “She’s just such a trouper,” and followed close behind by its sister sympathy, “Poor thing.” Though whispering around her is pretty pointless. If anyone knows about the echo quality of atriums, it’s my sister. Not much gets past her when it comes to the complex terrain of pity. She would never admit to enjoying the “reverent compliment,” but I have seen and been frightened by the venom she’s prepared to release into the necks of those who have wronged her while she was ill. After the doctor’s phone call, I have to say I looked forward to releasing some venom of my own.
I gave up on my morning of managing e-mail. I sat at my desk, ready to pick up the phone again. I wasn’t officially diagnosed yet, but I knew this was the kind of thing that would interest my family immensely, being the diseased clan they are. Unfortunately, after a certain age, it becomes difficult to share any news with your parents that begins with “I have something to tell you” without sensing the hopeful expectation behind their voices: they want me to be a lesbian. That would explain so much for them—if I’m single, why I’m single; if I’m not wearing makeup, why I’m not wearing makeup; if I don’t want to be set up with their friends’ children, why I don’t want to be set up with their friends’ children.
My mother screamed for my father.
“Denis, pick up the phone! Your daughter has news!”
“Which one?” He clicked in.
“It’s me, Dad.”
“Hi, me. How can we be of service?”
I adopted my doctor’s flat, professional, but easy tone and explained my situation as it had been explained to me: shock ’em with the diagnosis, comfort ’em with the cure. They were silent.
“Pretend I’m a superhero,” I added. “Iron Woman.”
“Well, hey,” my father piped in, “maybe now you’ll be able to set off metal detectors like your mother.”
Now that I had told my parents, my disease seemed more real but less dramatic. These are people who come from the “call me when you’re bleeding” school of sick days. Once my father sliced off part of a finger with a razor blade while
redoing the wallpaper in our den. He sat on the sofa with this towel-wrapped hand in the air like a bloody Statue of Liberty while my mother set about expunging bloody splatters from her freshly purchased wallpaper. About two hours and four red-soaked hand towels later, it was suggested that perhaps a trip to the emergency room was in order.
I don’t know why I expected them to waver from their “no intensive care, no problem” policy but I felt a twinge of disappointment at their lack of concern. Perhaps they had been worn down by all the very real drama of my sister’s health. Perhaps they were merely trying to remain calm, sounding inner parental alarms so high-pitched only the dog could hear them.
I had given blood before, but never to a nurse at a blood doctor’s office. It was like having that first sip of good vodka and tasting hints of what it is all the crappy vodkas are trying for. They painlessly filled up four different vials and sent me back to the waiting room where I did some filling of my own: at least ten double-sided forms. Long gone was the realm of primary care. Specialists were a different league of form. They asked me about every procedure I’d ever had. Piercings? Yes. Broken bones? Yes. Spinal taps? Actually, yes.
The week before I left for college, my mother took me to every doctor she could think of. Her empty-nest insanity had gotten the best of her and she temporarily forgot that Connecticut wasn’t Calcutta. We went to the dentist, the gynecologist, the ear, nose, and throat doctor, and the optometrist where she hovered as I rested my chin on a metal slate and flinched into what appeared to be an elaborate espresso machine. Through the hole in the center of the contraption, the doctor’s eyeball was magnified. I focused on it and he flinched backwards. Then he shone a pen-sized flashlight in my eyes, said “huh,” and left the room. He shut the door behind him and the room turned dark.
You never, or almost never, want to hear a medical professional say “huh” followed by a door slam. I picked at my nails.
“Don’t pick at your nails,” my mother scolded me in the dark.
“How can you even tell?”
“See! I knew it. I knew you were picking!”
The door frame lit up again. My doctor returned with another physician, who did the same thing with the flashlight and once again consulted the espresso machine. The first doctor explained to me that I had swollen optic nerves.
“They don’t feel swollen.”
“They are.” He looked at my mother.
“Probably because of all that child abuse,” she laughed.
My whole family likes to joke with doctors as if to say: I know we’re your patients but we’re one of you. You don’t need to coddle us. We will not be big babies about our diagnosis. They have been known to stop seeing physicians who don’t laugh at their jokes. I wholeheartedly disagree with this way of being. I am a big fat baby and I’m fine with that.
“What does that mean?” It was time to get serious. The doctor directed his answer at my mother as if I had thrown my voice.
“It means one of three things…”
I imagined three game show set frames with sparkling red curtains and my mother in a majorette’s outfit drawing them back one at a time.
“She either has an excess of calcium deposits on the eyes, an excess of spinal fluid, or a brain tumor.”
Ta-dah!
My mother had no jokes for this one. She held on to her purse like the doctor might steal it. Then he made eye contact with me for the first time.
“I don’t have a brain tumor,” I explained, almost inaudible.
“I have freshman orientation.”
And so I left for it. I grabbed a plastic cup, waited in line for keg beer, played mnemonic name games, and even kicked my legs up for “Crab soccer on the Green! One o’clock! Across from the chapel!” The sun was shining down on the grass, the mica-flecked stones of academia glistened in the distance. I walked on my palms, imagining the giant rubber ball as my brain tumor. I made such a herculean effort to keep it in the air, I could have been mistaken for a joiner. I went around the campus meeting people, shaking their hands limply, as chances were I had a malignant tumor the size of a grapefruit.
A few weeks later I returned to New York to begin ruling out possible causes for my fat-ass nerves. That’s when I had the spinal tap. While not something I’d recommend for recreational purposes, it isn’t horrendously bad. Mostly it’s the lying naked in fetal position for two hours with a needle between your vertebrae and everyone reiterating that you are not to move under any circumstance. At no point does anyone come out and say it, but each warning is another nail in the coffin labeled “potential paralysis.”
When the test results came back it turned out I had tiny calcium deposits on my eyes. Too much milk as a child or something. The calcium deposits caused my optic nerves to appear swollen. It was nothing to worry about. Just something to warn eye doctors of in the future so they didn’t get CAT scan–happy on me.
I couldn’t remember the last time I thought of my week of menacing death. I hadn’t even considered it in the face of this new odd blood ailment. Medically, my new problem and my old were completely unrelated. But now, sitting in these waiting room bucket seats surrounded by old copies of AARP, New York, and Hematology Today (“Wonder what their circulation is like,” my father might say for the benefit of the nurses), I could hear the voice-over: “Imagine you had one week to live. What would you do?” I could feel a familiar paralysis set in. Apparently, I would do nothing.
Anyone who was with me during that first week of college will attest to the fact that I didn’t do a single upperclassman or one-handed keg stand or anything beyond the basic social requirements of freshman orientation. There are no voice-overs (if there are, that’s a whole other problem) and news of one’s imminent death tends to inspire profound upset, not reckless mania. It was comforting to know that in my highly abnormal state I was at least reacting normally to something. Still, I wondered if my new disease would inspire the same status quo attitude I had experienced years earlier.
“So, Sloane,” the hematologist said as he peered at my chart.
“Like the cancer hospital?”
I nodded.
“Don’t tell me—Dr. Getty thinks you have hemochromatosis.”
I nodded again.
“Yes!” he said. “I knew it!”
I remained stone-faced. If anyone should know how to read a blood chart, I thought it should be this guy. I wasn’t prepared to congratulate him for this.
“And you’re of Eastern European descent.”
I felt like I was watching Dionne Warwick and her psychic friends sucker me into a hundred-dollar phone bill by telling me what I already knew. He went on to explain how the disease works, which nationalities are prone to it, and why iron buildup is a bad thing. While I am always appreciative of doctors who don’t speak to you like you’re an idiot, when he got to the advanced biochemistry of my blood cells it was time to say “uncle.”
“You lost me at hemoglobin.”
“We have to administer a more specific test. If your iron levels remain as high as they appear now, you’ll have to be phlebotomized frequently.”
“Is that legal?” I tightened my paper robe.
“Quite. And if this is the case, we should start soon. Best means of prevention. You can get dressed now.”
Turns out I was wrong about the lapel ribbons. The green ribbon, though more commonly associated with organ donation and missing children, is also the choice of hemochromatosis-conscious lapels worldwide. Green was a reliably good color on me. Green I could do without drawing too much of the bad kind of pity while retaining the good kind of dignity. It was certainly better than brown (antitobacco, presumably cream-toned before all that Skoal), periwinkle (eating disorders, also the color of a Big Gulp in reverse), or my personal favorite—gray with black speckling (toxic molds, self-explanatory). It also turns out that my blood is type O negative, the universal donor. And because there was apparently nothing wrong with my actual blood, only the way in which
my organs were processing it, that would mean I was giving about a pint of blood to the Red Cross every week. I figured at twice a week, this added up to enough good deeds to earn me a year of get-out-of-jail-free bitchdom.
Some people have water weight, I had blood weight. I was looking forward to losing it. I knew I was moving fast—I wasn’t officially diagnosed but I found myself clicking back into the CDC website and further into the labyrinth of “symptoms” links. I felt my heart pounding, pushing out my metallic blood. I envisioned my red blood cells magnified and shaped like hemorrhoid cushions. I pictured them being doused in liquid mica on their way out of my arteries so that my blood actually sparkled.
The symptoms of hemochromatosis could include fatigue, nonspecific stomach pain, weight fluctuation, loss of sex drive, depression, and excessive urination. I had myself an explanation for everything that had ever been wrong with me. All I had to do was get used to needles and lay off the iron-stuffed sushi. The absence of eel and tuna rolls would have to be appropriately mourned but it was a fair trade.
My mind was a slide show, a trip down Ailment Lane: Me, pensive on a Fort Lauderdale beach during Spring Break. No Jet Skis for me, thank you; I’ve got my journal to keep me company. Me, missing the second half of Chicago on Broadway because I was trapped in the bathroom. You can see how I didn’t even have time to cover the seat with toilet paper. Me at two A.M. after a night of drinking, scheming how to politely make an entire box of pancake mix and go to sleep rather than have intercourse with my boyfriend. Why, I had even been tired as recently as the night before! Just thinking about it made me yawn! I had a destiny and that destiny had a name and that name was hemochromatosis. I felt better already.
My sister wanted to come with me to the hematologist’s office to get the results, but I wouldn’t let her. Like a broken compass, here was a woman for whom all doctors pointed to something bad. She never left a medical office without a diagnosis for something fairly awful scribbled down and folded up in her wallet. Just being in the vicinity of a prescription pad was pressing her already bad luck. Not to mention that if I did have hemochromatosis, I didn’t want her there. The one tiny detail I had not yet shared was that this thing was hereditary. While my parents were probably fine, chances were that she had it, too. All those years wishing I could take something on for her, and here I was about to give her one more thing to worry about.
I Was Told There'd Be Cake Page 18
