March 26, 2008 at 3:21 pm (Uncategorized)

“I don’t know what’s wrong with me,” the girl at the coffee shop counter said. “For the past few days, my stomach has really been bothering me.” I watched her hands as she steamed the milk for my latte. How close to the milk—my milk—were they? “Well, maybe you have that Norovirus thing,” her co-worker said. They were talking about the Norwalk virus, a gastrointestinal bug that has been running rampant through our mid-sized community. It causes vomiting, diarrhea, stomach cramps.

Without realizing it, I found myself inching away from the counter, from the sleek-haired girls who were likely chock full of vomit-causing parasites, from the lovely cup of frothy coffee I had ordered. I hadn’t paid yet. I could run out into the cold, clean air. But Jay and Andrew were with me and we were celebrating the fact that I had actually sent off a book proposal loosely based on this blog. I couldn’t just dash off and leave them there. “Crap,” I thought. “We need to develop a signal, a code to bail from a disease-infested environment.” Something along the lines of when I touch the side of my nose and say, “I wonder if the President’s tummy ever gets upset,” that means we are threatened by a gastrointestinal bug. If I scratch my head and say, “I wonder if the cat was coughing up a hairball or if she has a cold,” that means a respiratory infection is lurking nearby. And then, we run.

But, code-less, we ended up staying and enjoying our coffee. I, of course, pulled out one of the eight thousand bottles of hand sanitizer I keep stashed in my pockets, in my purse, in the glove box of the car, and in every room of the house. I poured about half a small bottle on my hands and made Jay and Andrew use the rest. I also pulled out an anti-bacterial wipe and swiped the outside of the cup and the wood counter in front of us. People were staring. Jay and Andrew didn’t bat an eye, because they are used to this protocol. However, I did decide not to mention the “RUN AWAY” code at that moment. They both have hands that are cracked and chapped (Jay’s to the point of bleeding) from so much hand-sanitizing and washing. I let Jay savor his coffee and Andrew the trinket we had purchased for him before I started in on another germ talk.

We live in a world that looks friendly and clean. It is not. Every surface is crawling with drops of flu virus launched from the snot of someone’s sneeze. Or stomach virus left behind from someone who didn’t wash their hands after using the bathroom. Our vegetables are contaminated with fecal matter. Our chicken is laced with salmonella. And every time you touch something, you bring that nastiness onto your hands. Then it’s just a matter of rubbing your eye, brushing your nose, placing your lips on the rim of the coffee cup…and forty-eight hours later you’ll be retching over the toilet, or running a high fever, or coughing up green gunk from your lungs.

If you’re me, you’ll end up in the hospital. I am what the doctors nicely call immuno- compromised. Because the current theory is that sarcoidosis is caused by my body’s own immune system gone awry, the treatment is to ratchet down my immune system. I take lots of prednisone—so much that you might feel compelled to ask me for an acorn from one of my chubby squirrel cheeks—and I get monthly infusions of Remicade. Both of these drugs suppress different aspects of my immune system. The prednisone does something like bind up my white blood cells, while the Remicade works on shutting off my T-cells’ production of tumor necrosis factor (TNF). If I sound like I understand this, I don’t. I have tried plowing through scientific papers on the topic. I only get one out of ten words; that one word usually scares me enough that I wonder if I don’t have the Norwalk virus because I so urgently feel the need to use the bathroom. Cancer. Demyelinating diseases. Leukemia. Severe infections. Death. The take away message from these one-out-of-ten- words and from my chats with my physicians is that: 1) I am much more likely to get an infection than the average person; 2) Any infection I get is much more likely to become serious and turn into either a) pneumonia or b) sepsis; 3) No one can predict the long-term consequences of these drugs I take. I mean, the Remicade infusions are basically rolling out the red carpet for cancer. My body is like a sneaky teenager. “The parents are out. There won’t be any TNF around here for three hours. Bring on the malignancies.”

Since I am sick with chronic sarcoidosis and feel like crap most of the time, I’d prefer not to spend whatever few days of relative good health I do have contracting sepsis or getting acquainted intimately with my toilet. Hence, the hand sanitizer and the wipes and the hand washing. It might seem extreme. I wipe down Andrew’s library books with anti-bacterial, anti-viral wipes. When I steal trashy magazines from doctors’ offices (I have an impressive collection of People considering I don’t subscribe), I swab those pages with wipes and then sanitize my hands before reading. Whenever we return to the house, we wash our hands. It doesn’t matter if we just poured on the hand sanitizer in the car. We roll up our sleeves, make the water nice and hot, pump out the anti-bacterial soap, and, then, only after we have bubbles formed, do we sing “Happy Birthday”—usually to a Pooh character or to someone like Lowly the Worm from the Busytown books. Why “Happy Birthday?” Why sing at all? Or why not “Three Blind Mice?” According to my doctor, the time it takes to sing “Happy Birthday” is exactly the right amount of time needed to zap the microbes.

For the most part, I try to cut down on unnecessary errands that bring me out into the dangerous world. Oddly enough, I typically nix the grocery store, but spend half my life either in doctors’ offices or in back corridors of hospitals getting expensive tests—CT scans, PFTs, MRIs. (The medical establishment seems to think that giving bland procedures like “pulmonary function tests” sporty acronyms like “PFTs” will add a certain glamour to huffing and puffing into a plastic tube. PFT sounds like an attack helicopter or an invasion strategy. It sounds like war.) I know I am overly housebound when the prospect of going grocery shopping feels like an event. “Put on lipstick! Get out the curlers! We’re going to Safeway!”

While I’ll acquiesce to limiting my comings and goings, I won’t have my four-year old live a hermit’s life. We did pull him out of pre-school at the doctor’s insistence. But I make sure the babysitters take him to story-time at the library, to the park, and on play dates. Of course, I always call ahead to see if anyone in the potential play date’s family has coughed, sneezed, blown their nose, or had an upset stomach in the past week. And, of course, I always bellow after Katie or Andrea as they leave with Andrew, “Don’t forget to sanitize your hands and his hands.” “Yes, Rebecca,” they say, in the calm, but tired, voices of those who work for the mentally ill.

I’ll be the first to admit that sometimes I’m a bit extreme. A couple of weeks ago, Jay and Andrew caught the flu, not an unnamed bug but influenza. They had fevers above 103 degrees. They coughed and hacked and ached and were utterly miserable. “If you catch this respiratory flu, you’ll be in the hospital,” my optimistic doctor told me. “Take the Tamiflu and pray.” I stopped short of setting up a small Tamiflu shrine where I could leave burnt offerings for the medication. But I did sleep downstairs in a bed far away from Jay and Andrew’s contagious breath; I refused to let Jay leave his bedroom (once our bedroom, but now claimed by infection). If I entered the sick room, I went through a decontamination routine out of a science fiction movie. I am typically the nurturing type, so I had to reign myself in, remembering the doctor’s warning. So I cooked homemade chicken soup and left it outside Jay’s door. I talked to him on his cell phone from across the hall. I assured Andrew that I loved him desperately, but refused to cuddle with him. Maybe it was the candles and the incense at the Tamiflu shrine, or maybe my strict self-quarantine worked. But Jay and Andrew recovered—psychologically and physically—and I have yet to get the dread influenza.

Sometimes, when I compulsively scrub down anything that has come in contact with the world with an antibacterial wipe or when I pour several ounces of Purell into Andrew’s hand and encourage him to rub it all over his hands not just his palms, and a stranger catches my eye and slightly shakes his head, I wonder if I have crossed some line. Have I moved from being cautious of catching something to having a full-blown obsessive-compulsive disorder? Should I have wiped Andrew’s flu snot away? Should I let him wash his hands for a few seconds and not worry if we sing all of “Happy Birthday?” Should I feel guilty that my four-year old seems to fully comprehend the concept of germs and infection and the fact that Mommy can get really sick from stuff that won’t make him sick?

I am sure some people would say that I have gone overboard. Maybe the surgical masks I keep on hand (compliments of my most disease-conscious friend) are over the top. But then, these people haven’t had to watch their son’s small face crumple into despair and tears to learn that Mommy has to go back to the hospital and spend the night. They haven’t heard the choked sound of his tears when I talk to him on the phone from the hospital. “I want to come sleep there,” he told me when I was last hospitalized for pneumonia. I’d rather feel crazy than have my heart—and his—hurt that much. I want to be in his life, not locked away in a hospital bed or dead from sepsis. If I am making him slightly neurotic, so be it. If it takes me wearing a Hazmat suit, so be it. If it means I never stroll the aisles of the grocery store, so be it. If it means his hands are chapped, so be it. After all, it’s not all bad. He’ll be the hit of every birthday party with all his practice singing. Lowly the Worm and Tigger can vouch for that. He can belt out one hell of a “Happy Birthday” at the bathroom sink.

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Sound of Silence

March 18, 2008 at 2:00 pm (Uncategorized)

Sickness makes you quiet.

When you’re first diagnosed with a serious condition, most likely you’ll fall into a stunned silence. The silence will thrum in your ears and in your brain. It will undo language; it will deconstruct the words and letters that give form to your thoughts. Imagine the straight line that anchors the loop of the letter “p” flying off into space. After it, the camel’s hump of “m” and the assertive angles of capital “L.” That’s what dire news does to language. The letters will re-make themselves in a few seconds or a few hours, depending on your level of shock.

Of course, once the silence retreats like the tide, there will be a great clattering of noise: people asking you questions, you asking doctors questions, hospital nurses bellowing in your ear as you awaken from surgery, concerned friends and family phoning to see how you are. But the silence will return.

At first, I kept up with the racket that followed the silence. I tried to keep everyone apprised of my health. I explained, and then re-explained what sarcoidosis was. I educated myself about treatment options and then talked to my husband, my parents, my doctors, my friends, my family. I burned up the phone lines soliciting opinions and conveying information. Although I didn’t see it as such at the time, what I was attempting to do was build a bridge between my bizarre new illness and my life. Each letter and word, now nicely returned to its original shape, was a brick in this bridge.

Maybe if my disease had done what it was supposed to do (seventy percent of sarcoidosis cases spontaneously remit), I would have kept talking. But it didn’t. Like a drunk lost in the woods, sarcoidosis lurched from organ to organ, sometimes doubling back to hit one of them twice. My complicated disease now required complicated treatments — each of which seemed to cause a complicated health problem of its own. The initial excitement of diagnosis, and the flurry of activity to get through what I thought was a short-term crisis, gave way to the medical equivalent of World War I. I’ve been in the trenches for four years now, and the artillery is still exploding overhead. Once high doses of prednisone alone couldn’t stop the disease, I tried a chemotherapy agent called methotrexate. Then I injected myself with a fancy new drug called Enbrel. That failed. Now I’m on high doses of prednisone and an even fancier new drug called Remicade. My notes home from the front keep getting shorter and vaguer. I’ve been shell-shocked into silence.

War imagery implies trauma, and there is a good bit of that that goes along with illness. I’ve had my share. For me, there’s been the botched liver biopsy that left me flat on my back, warned that any extra movement could cause internal bleeding. There have been surgeries and hospitalizations. There’s been the onset of neurosarcoidosis, and with it headaches and vertigo so disabling that I spent days in the hospital, curled on my side, counting the minutes until the morphine pump dripped its next dose into me. There’s been the doctor’s visit where the florid-faced internist tried to cheer me up by telling me, “Well, at least you know what will kill you.” And there’s been the other doctor’s visit, where the thin-lipped doctor in a skirt and boot ensemble just a little too fashionable for Montana said I shouldn’t count on seeing my then two-year-old son graduate from high school. And I shouldn’t leave out the handsome cardiac electro-physiologist who wouldn’t promise me I wouldn’t drop dead from the sarcoidosis in my heart.

My point isn’t to complain. I know I don’t have it as badly as others with sarcoidosis. But I do feel besieged by this disease. It’s as if every week, I have some new manifestation of it, or some new reaction to the treatment, or some crisis emerging somewhere in my embattled body. Just as I’m sure those World War I soldiers self-edited some of their letters home (how many scenes of gangrenous feet, young men dropped by mustard gas, and dismembered bodies could a sweetheart really want to know about?), I have grown tired of being the bearer of bad news and catch myself omitting details about my illness. It pains the people I love to think of me hurting, to think of me stumbling around my own house because the disease has taken root in my head. My mother doesn’t want to contemplate her youngest daughter having lung damage; my friend Amy doesn’t want to hear that the sarcoidosis is in my bones; my sister doesn’t want to find out that my steroid therapy has left me diabetic or that I might not live to see Andrew enter college. I’m not saying they want ignorance — because they don’t. They want the truth, but they want the truth to be good news, something I’m in short supply of these days. Every phone call I make to report on a doctor’s visit leaves me feeling like I’m disappointing people. So rather than repeat my daily dose of doom and gloom to the many people who care about me, I find myself choosing silence. I’ll let a day or two go by before returning a phone call from a friend; before I know it, weeks have passed without me having delivered bad news.

But my newfound silence isn’t entirely noble in its origin. It’s not just about sparing other people from worrying about me. I get tired — physically, emotionally, and spiritually — of rehashing the very things in my life that make me feel sad and hopeless. I want to — I need to — step away from this disease, to have conversations about the weather, the Democratic primaries, or my son’s latest accomplishment. But everyone, quite rightly and quite kindly, wants to know how I’m doing. If I side-step the question, they become more direct: “How’s your health?” Brush that off with, “Oh, you know, ups and downs” or “Pretty much the same,” and they start asking specifics. It’s like trying to brush off a cobweb. And having a chronic disease already involves living among too many gossamer threads that refuse to release me. Having sarcoidosis has imbued me with a reverse claustrophobia. It is not me that is confined to a small space, but the disease within me is pressing against my cells, wiggling into crevices, crowding me out of my own body. There is no space left for me.

Once the silence starts to assert itself, it is difficult to end it. I have a hard enough time keeping up with the vicissitudes of my disease. Explaining it to everyone else has begun to feel impossible. Just yesterday I learned that my lungs — which have always been sound (odd, I know, given that sarcoidosis is primarily a pulmonary disease) — are now affected. Every week seems to bring a new test that reveals a new aspect of what sarcoidosis is doing to my body. I’m on a fast-moving merry-go-round. If you’ve stepped off it for a week (or if I’ve kicked you off it through my silence), how can I ever pull you back on and get you up to speed? In one week, I might have been hospitalized, had a trip to emergency room, or learned that my heart isn’t functioning properly. It is too much work to keep up, to keep you up.

Also, there is a great divide between the well and the unwell. We who live in chronic town might look like you, but our lives are fundamentally different. We move to a different rhythm — one dictated by medical appointments, medical regimens, medical successes and medical failures. Something as simple as accepting a lunch invitation is a tricky proposition for me. Will I even be awake by lunchtime? Sometimes the fatigue that comes with my illness makes me sleep until late in the afternoon. Will I be able to get out bed? Ever since the disease has moved into my brain, I have bouts of vertigo where walking across my bedroom is like navigating a ship’s deck in a storm. Will there be food for me to eat now that prednisone has made me a diabetic? Will I have the stamina to answer how I’m doing? And will I have the inner resolve not to feel like a worthless human being because my life is spent in hospitals and waiting rooms, not working at an exciting job or raising a pack of children?

Not talking about my disease — or not talking at all, which is sometimes easier given the persistent “how are you doings” — also involves a vain part of me not wanting to become tiresome to family, friends, or even acquaintances. “There’s Rebecca,” someone might say to themselves in the grocery store, before ducking out of sight down another aisle before I catch side of her. “Run into her and you’ll get stuck for an hour hearing about her liver and her T-calls.” I imagine myself as a sort of Jacob Marley, dragging my sarcoidosis around after me with a lot of clanking and ceremony. Maybe it’s better if I’m the one who scoots out of sight at the grocery store.

I know it’s ironic that in explaining the silence that has claimed me, I am broadcasting the news of my disease to the world through this blog. I know this means there is a piece of me that still wants to build that bridge between chronic town and your town. I can create a cathedral of silence, a welcome respite from the world of illness. But still I crave to be heard.

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Someday My (Housework-Helping, Democratically-Elected) Prince Will Come

March 7, 2008 at 2:32 pm (Uncategorized)

“At the touch of Love’s First Kiss, Snow White awoke,” I read to my son Andrew, who was nestled next to me in bed. “There, bending over her, was the Prince of her dreams….” My voice trailed off. We had already covered Snow White’s mother dying, and the huntsman hacking out a deer’s heart instead of Snow White’s. I had reassured Andrew that “everything will be OK” as he whimpered next to me when Snow White crumpled, barely breathing, to the floor of the Seven Dwarves’ cottage. I would not be stopped, here, on the very last page, by a bit of anti-feminism.

So I performed a minor modification to the end of the story. The original text proclaimed, “Snow White knew that she loved him, too.” But to my son, I read, “Snow White knew that she would grow to love him, too…” I fumbled a bit, and then added, “because he was a kind man…and a good leader…and a fair ruler…and they would share their lives together.” My husband Jay, who was reading a magazine in bed next to us, began to make aggressive throat clearing sounds in an effort not to laugh. I did stick to the tried-and-true final, formulaic sentence: “She said good-bye to the seven dwarves and, mounted on a white charger behind her Prince, rode off to his Castle of Dreams Come True.” I refrained from expounding that his Castle was only his temporary abode — one of the perks, like the White House for our President, that came with being a democratically-elected leader. And then I closed the book.

I can already hear a great harrumphing barreling down my high-speed cables. “It’s just a story,” the harrumphers say. “What’s wrong with love at first sight? Why must you politically correct people take the fun out of everything?” I must admit there is a piece of me that agrees with the grousing of those readers to the right of me. I felt slightly ridiculous — almost prudishly Victorian — in my tentative reworking of a story I had cherished as a child. And nevertheless, I had done so. Why?

Snow White is indeed “just” a story. But stories aren’t mere words on a page, especially ones like fairy tales that we’ve been telling and retelling ourselves since feudal times. Snow White and the rest of the Brothers’ Grimm fare carry along hundreds of years of cultural connotations in their wake. They help shape how we think of ourselves and our place in the world. They teach us — about good and evil, about the powerful and the powerless, and about the perils that threaten those who are good and powerless.

If you think I’m way over-reading things, well, at the very least I’m not alone. For painfully academic lit-crit, it’s hard to top the heavy-handed psychoanalytic interpretations of Bruno Bettelheim. Try this one: When Snow White’s mother pricks her finger sewing and wishes for a daughter “with lips as red as blood, skin as white as snow, and hair as black as ebony,” Bettelheim interprets: “…the significance of menstrual blood [is] symbolic here of the birth of Snow White and, later, of Snow White’s own sexual and social maturation involving a threefold unification of the white, black, and red parts of nature.” Yikes.

I’m much more partial to “Peasants Tell Tales: The Meaning of Mother Goose,” a chapter in Robert Darnton’s The Great Cat Massacre, a masterful – and very funny – book about pre-modern Europe. Darton believes that folk or fairy tales — like all stories — provide the reader or listener insight into the social construction of their reality. The message delivered by the story isn’t that Snow White wants to roll in the hay with her daddy (as Bettelheim would have it), but that life is very fragile and that one’s fate, even if you are a princess, is determined by seemingly random and capricious events. Snow White survives because of the kindness of strangers, who are weird outcasts themselves.

Of course, none of this was on my mind when I opened a tattered book from my own childhood to read to Andrew. I just needed something new to read. Now that he’s four, we’ve finally been able to progress to longer and more interesting stories. As much as I love my kid, there’s only so many times I can plow through the Berenstain Bears dealing with their god-awful gimmies or visiting the dentist without wanting to rip out my hair — or at least the pages of some of Andrew’s books. I was sorely ready for something with a real plot.

Jay got the jump on me in the realm of reading longer books, however, by starting Andrew on Jay’s childhood copy of The Hobbit. Even though I’m more than ready to leave behind the smug, moral order of the nine thousand Thomas the Tank Engine books we’ve consumed, I still thought my husband was overreaching a bit. Andrew is intelligent and all, but The Hobbit’s pages number in the hundreds and our edition has nary a picture to distract a preschooler. Honestly, though, my resistance was more primal. I’m not quite ready to launch my little fledgling out of the tidy nest where Thomas, James, and the other engines reside — a lovely island where, in the end, the truth always gets told, punishments are fair, nothing ever turns out too badly, and there’s always a cup of tea to be had — into the shadowy underworld of Tolkien. He’ll learn soon enough that “ignorant armies clash by night,” to quote Matthew Arnold. “He’s either not going to understand a bit of that, or you’re going to traumatize him,” I warned Jay.

I was wrong. Andrew can’t wait for their nightly forays into the adventures of Bilbo Baggins. From time to time, Andrew will reproduce some plot detail for me. “The sunlight turned all the trolls into stone!” he told me the other evening in a happy voice. “And Bilbo got their treasure.” There’ve been no night terrors, no lingering worries that he’ll be stuffed into a sack while someone contemplates roasting or boiling him.

I wasn’t expecting how much the story would bother me, though, with its largely amoral and English-ly sardonic world-view. (There is much longing for tea, at least.) Maybe that’s because my cherished childhood book was a Walt Disney compilation of various folk tales, replete with peril but ending neatly and happily. Which is not to say I’m a huge Disney aficionado as an adult. I know some folks adore all things Disney (taking it to extremes, I’ve heard of Mickey Mouse-themed weddings, where they bride wore mouse ears, and of people moving to a planned Disney community in the Florida swamps). But I’ve long been put off by some of the messages the company delivers right along with its “wholesome stories.” There’s a slickness to everything they produce — a blurring of the line between innocent childhood play and flint-eyed marketing. It’s as if there’s a conveyor belt delivering kids straight from the movie theater to the store to purchase the latest big-breasted “Disney princess” and then to MacDonald’s (or Burger King, or whoever else stumped up the millions in licensing fees) to obtain the plastic, movie-themed trinket to accompany your deep-fried lunch. It feels very far from Darnton’s notion that these stories are teaching us about our place in a fragile world. Or maybe it’s not that far. The Disney re-tellings are teaching us, all right – to buy, buy, buy. Oh, and also that someday your prince will come.

Perhaps I shouldn’t worry too much about this last one. I’m lucky to have a boy, so I can (hopefully) set aside my feminist worries about my child chirping away like a cricket that some handsome dude will rescue him from all the injustice and intolerance of the world. But then, I also don’t want my son to view damsels in distress as the norm. Even though I’ve had to rely physically, financially and emotionally on my own version of Prince Charming (Jay) since my sarcoidosis diagnosis, I want Andrew to find his equal in the world — a woman who tackles her own problems, has her own passions, but who can help take care of him. In other words, I want him to marry pre-sarcoidosis me. (I don’t want to contemplate what Bettelheim would make of that bit of information.)

I also think I was also brought up a little short when I re-discovered that Snow White follows what seems like a patented Disney formula: kill the mother — without a backward glance and before you’ve hit page two. Now, I know that Disney — and the folk tales from which it’s constructed many a hit movie — aren’t plotting the demise of all mothers. They are simply moving the plot along with a tried-and-true strategy. How can a young man or woman (or fawn or fox for that matter) undertake the journey necessary to become a hero or heroine (or simply have an adventure) if Mommy is always there, calling you home for dinner, pre-screening your suitors, and declaring glass footwear both unsafe and thoroughly ridiculous. “You’re going out? In those shoes? I don’t think so, Missy.” (I’m surprised that once Disney acquired the rights to Winnie the Pooh it didn’t immediately off Kanga, the kind and doting mother of Roo, who gets her scampish kid out of many a scrape, and replace her with an evil step-Heffalump or something.)

I know I’m being oversensitive. And I know I’m talking out of both sides of my mouth. If the original folk tales are about conveying the painful yet magical, reality of our world, then I should applaud Disney for letting the mothers die. Mothers die all the time, and back when Snow White was an oral folk tale, they died in droves, not least from childbirth. Here’s the catch, though: I’m acutely worried about becoming a dead mother and I have enough reality on this topic. Just a few hours ago, I had chest pains and heart palpitations that nearly sent me to the emergency room. Ergo, I don’t like reading about dead mothers. And I don’t want Andrew worried about me becoming a dead mother. As it is, he makes a habit of asking quite solicitously after my blood sugar. He also claims he’s going to “bash” the sarcoidosis right out of me. I like the spunk in that approach, and dread the day he asks the inevitable question: “Mommy, are you going to die?”

As I read the story to him, though, I didn’t revise the portions of dealing with the dead mother, or with the helpless princess awaiting rescue. It was only when I got to the end and Snow White instantly fell in love with the Prince that I started spinning a secondary tale — the one that amused the hell out of my husband. It was a small statement on my part against many things that prickled at me. And perhaps I am being a femi-Nazi, or a zealous politically correcto. Maybe I’m ruining a good story by making it more than a story. But if Disney can rewrite history of Pocahontas and John Smith as cavalierly as it did (and then produce a Pocahontas “Disney princess” for sale at Wal-Mart to boot — one that conveniently omits her small pox scars, I presume), why can’t I encourage my son to believe true love involves more than a magic kiss? Why shouldn’t this not-dead mother try to conjure up a new kind of Prince for our new world?

As I pondered further my hesitations with both telling the story and taking liberties with it, it occurred to me that my queasiness about revisionism transcends gender roles and corporate rewrites. Living with a chronic disease — one that has taken from me the image of myself I want to pass along to my son — requires constant rewriting and revising to maintain my sanity and my dignity. For instance, I catch myself apologizing to Andrew and Jay for not being able to go ice skating or downhill skiing with them. “That’s OK, Mommy,” Andrew will say. “You needed rest.” And he’s correct; I did need the rest. But his is not the original version of the story I wrote for myself as a mother. Yet just as surely as Snow White deserves a prince who helps clean the toilets (and, hey – me, too, come to think of it), Andrew, Jay, and I needed to revise the wonderful fairy tale we had spun for ourselves about the three of us kayaking amid Pacific islands and backpacking the Rocky Mountains for weeks on end. Instead, our kid knows a lot about medicine and can do a credible job of starting an IV line on one of his stuffed animals. He doesn’t know the woman I was before sarcoidosis. This used to bother me intensely, but now I wonder if we aren’t telling (and re-working) a more nuanced vision of life for him. Parents get sick; sometimes they run out of energy and patience. This is real; this is reality. We make it up — and then try to fix it — as we go along.

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