I’ve been in a funk. And I’ve been feeling like crap. Neither of these are medical terms, I know, but they help explain why writing—or moving, or making the bed, or talking on the telephone—all feel like monumental efforts more in keeping with summiting a mid-sized Himalayan mountain than accomplishing the very minimal tasks of daily living.

It used to be (back in my pre-sarcoidosis days) that when I fell into a funk, I could use activity to jar myself out of my mood. A brisk walk or hike or a bike ride on a dirt road rutted enough to knock loose the funk was all it took to remind me that I had much to be happy about and little to fret over. Even when I was nine months pregnant with Andrew and the cumulus clouds that precede depression moved in, I would climb aboard a stationary, recumbent bike at the gym. Twenty minutes later, I felt re-charged, calmer, and paradoxically, more energized.

My other funk-busting strategy in the halcyon days before I moved into chronic town was to find people. I am, by nature, a loner. I like quiet, seek the corners (preferably behind plants) at large parties, and can endure a limited amount of social interaction in one day before feeling overwhelmed. Still, I love meeting with a good friend and gossiping over a cup of coffee. Lunch dates with people working out in the world (instead of typing away in a home office like me) took me out of my funkified head and left me revitalized.

Ever since I’ve had sarcoidosis, I’ve tried variations on these two strategies and have come up short—and still in a funk. I’m learning that what feels like depression is really the all-consuming fatigue that characterizes my disease. Nevertheless, when my mood turns sour, I still try to pedal (albeit for much shorter distances) on my stationary bike. However, instead of feeling rejuvenated at the end of the workout, I feel bludgeoned. Every day, I look at the bike in my room, and a little voice whispers inside my head, “You’d feel better if you rode that.” I argue with the voice. “Every bone and muscle in my body hurts; my head is pounding; I’m dizzy; I’m tired; I’m so short of breath.” Lately fatigue and more severe manifestations of the disease (along with what my husband Jay calls common sense) have won out and I haven’t forced myself through a workout. But I’m left with the funk, along with a feeling of failure for not having pedaled my way to a brighter frame of mind.

Meeting with friends is equally complicated. Talking on the phone too often leaves me with a screaming headache. (Interestingly, phone conversations—as opposed to face-to-face ones—leave the left side of my face totally numb.) I’m on so many different varieties of immunosuppressants that venturing outside the house to meet with friends feels like I’m contemplating cliff diving instead of meeting a buddy for a cup of joe.

This sick and tired dog needs to learn new tricks. I remind myself of our beloved dog Calypso, who, after having surgery, had to wear one of those plastic Elizabethan-looking collars to prevent her from licking her wound. Once home from the vet’s office, she had a terrible time navigating the house. She would misgauge the size of a doorway and walk into a wall. Bonk. Rather than back up and re-position herself, she would simply take two steps back and walk into the wall in exactly the same place. Bonk. This probably would have gone on for hours if Jay or I hadn’t intervened and guided her through the doorway.

I need someone to guide me through my own doorway of disease and depression. The old ways don’t work. They simply exhaust me more than they help me. If I could stop walking into the same wall, perhaps I could figure out new ways to cope with the funk. Bonk.

This evening, my niece (and goddaughter), is getting confirmed in the Catholic church. My mother is there with her, as is my sister. I am not.

When my niece was an infant, I worked for a few months as her nanny. My brother and his wife egregiously overpaid me to play with their child. I loved almost every moment I spent with my niece. It was through the acts of caring for her—changing her soiled diapers, tickling her tummy on the changing table, re-reading the same picture book fifteen times in a day, spooning sweet potato mush into her mouth only to have her spray it back on me with peals of laughter, pushing her stroller through the hot, deserted suburban streets, ripping off her socks for yet another round of “This Little Piggy”—that I realized I someday wanted to have a child and that when I did, I could manage the practical aspects. Now, she is a teenager, and, after tonight, she will be an adult in the eyes of the church.

I want to be there with her tonight. Even as late as last week, I toyed with the idea of flying or driving so that I could sit in a pew with my family and watch my niece be confirmed. But I can’t. A drive to Missoula and back (for a total drive time of under four hours) two days ago to see a specialist about my bone sarcoidosis made it clear that I couldn’t. I’m still recovering from the Missoula trip. Something about the minute movements of my neck in the motion of the car set off testy old cranial nerve number eight, and I’m still nauseous, dizzy, and half-blinded with headache.

I reason with myself that not being there isn’t such a big deal. “It’s not like I could do anything if I was there, right?” I ask myself. This is true. I wouldn’t do much if I attended her confirmation—just like I wouldn’t have done much at my husband’s brother’s wedding, or at my husband’s father’s marriage, or at the opening of my mother’s museum art show, all of which I missed because of my illness. We come to these public events not to do something, but to bear witness to the turning points in the lives of those we love. If I could be there, I could convey to my niece that she matters to me in ways that transcend any message I’ll write on the belated card I’ll send her. I’m adept with words, but they fall so short of human presence, of the connection of the flesh. I feel robbed by my disease to be present to confirm my love of her, to confirm my role as her godmother, to confirm myself as a part of her life, to confirm a bond that began with sweet potatoes and will last, I hope, a lifetime.

In the ceremony tonight, she’ll confirm her membership in the church her parents chose for her at birth. At baptism, she was a passive recipient; her parents and her godparents made vows standing over her. Tonight, she’ll use her own voice to make her own commitments. I’ll send the aforementioned card; I’ll call her later to congratulate her. I won’t have any words of wisdom for her. What I will say is, “I wish I had been there.” And there is a sort of confirmation in that.

It’s been a rough few weeks on my avenue in Chronic Town, and it’s been difficult for me to find the energy to write.

If I could make the healthy world understand only one attribute of living with a chronic illness, I would choose fatigue. Yesterday, I napped for seven hours (yes, that’s 7), woke up long enough to take my evening medications and slept for another eight. And today, I’m exhausted. I slept through a Remicade infusion, fell asleep in the lab at the hospital waiting to get my blood drawn, fell asleep listening to a book on tape. This level of fatigue—this gnawing, persistent, cry from my bones to go to bed and sleep—can last for weeks.  I’m hoping this latest bout of deathly tiredness only persists for a few days.

Partly I’m to blame for the exhaustion. I pushed myself hard to put together a book proposal. I had to work the equivalent of eight-hour days for about two weeks. Sadly, this crushed me, though I am glad to have the proposal done and proud to have been able to produce a 40-page document I can send to agents or editors. I’d really like to turn the meat of this blog into a book, and I needed the proposal to do so.

We had a couple of visitors, and even though I have given up cleaning, cooking, and fussing for guests, it still requires more energy than usual just to be upright for a greater percentage of the day than I usually am.

The real reason for this latest bout of exhaustion, though, is that somehow my sarcoidosis has become active again. How I can have a documented flare whilst receiving the maximum dose of Remicade along with a hefty dose of prednisone is making me a genuine scientific curiosity. I’ve avoided having sarcoidosis involvement in my lungs until now. My once perfect pulmonary function tests aren’t so perfect anymore. I huff and puff walking around the house. My liver tests are a mess, my heart is skittering again, and the large granulomatous lesion on my foot bone is back. I continue to have the headaches and vertigo caused by the neurosarcoidosis. Consequently, my last few days have involved very little besides limping, huffing and puffing, listening to my heart skitter, tilting with vertigo, seeing doctors, and sleeping.

I shouldn’t forget worrying. I spend plenty of time doing that. The White Coat Brigade wants to add a third drug to my immune-suppression mix. It’s called Imuran, and I think it is mostly used to treat organ transplant patients. But it does tamp down another part of my immune system, which is believed to be the source of my disease. I have the prescription, but I haven’t filled it yet. Jay did a preliminary Internet search on Imuran, and one of the potential side effects is cancer, especially when it is mixed with the anti-TNF agents like Remicade I’m taking.

Cancer is a scary word. But, then, so is the thought of sarcoidosis running rampant and a potential lifetime of sleeping eighteen hours day. I’ll do some mental weighing, putter around on the Internet to see what I can learn, and probably end up taking the drug—at least for a few weeks. But, now, I’ve got to go back to bed. I’m so tired.

“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.

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.

“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.

I want to thank Paul and Nelda and Nancy and all the other people who wrote in response to my last posting either by commenting on the blog or e-mailing me. “Careless” was a difficult piece to write, but even more challenging to broadcast to the world. Knowing that I’m not writing into the void—and also that other people understand and relate to the less savory aspects of living with a chronic illness—is a gift.

One recent night, long after my husband, Jay, and my son, Andrew, had gone to sleep, I found myself standing in front of the refrigerator, wolfing down hunks of the apple pie a well-meaning friend had brought us.

I wasn’t hungry, and the pie, although delicious, didn’t satisfy a particular craving I was having at that late hour. Nor was I savoring the experience of eating it. I didn’t warm a slice in the microwave, garnish it with a bit of whipped cream, and sit at the table to let the flavors of the flaky crust and the tart apples wash over my tongue. Nope, I deliberately stood, half-bent over the ice box, as if a tsunami might come and wash it away, and scooped pie with my fingers. I half-listened for Jay to come down the stairs and see me in the bluish glow of the appliance’s single light bulb with handfuls of forbidden food. See, I’ve been diagnosed with diabetes, and apple pie is not exactly on the Top Ten List of diabetes-approved foods.

The picture I am painting is not a pretty one. I’d rather my readers — both those I know in person and those who have come to know me only in cyberspace — not see this ugly side of myself. But whether or not the image of a fat woman uncontrollably wolfing down pie is pleasant or cheerful, it is true and it is real, and not enough people talk about what is true and real in chronic town. Also, I know I am not the only person who engages in rampantly self-destructive behaviors — even though at three o’clock in the morning, with a handful of pie, I sure felt lonely.

I am an overweight — no, to be fully honest, a fat — diabetic on enormous doses of steroids. I am nearly eighty pounds heavier than I was before I was diagnosed with sarcoidosis four years ago and started steroids. My body valiantly tolerated fluctuating doses of prednisone for those years without becoming insulin-resistant, but a recent boost to 80 milligrams of prednisone (necessitated by a sarcoidosis flare-up in my cranial nerves and bones) has apparently pushed my endocrine system over the edge. I, like millions of others, am now a diabetic. My physician told me to check my blood sugar six times a day, record and count my carbohydrates, and inject myself with rapid-acting insulin before every meal. The doctor sent me to a perky diabetes educator at the hospital who determined my carbohydrate range for each day. She encouraged me to keep a food log and measure and define the amount of every morsel I put between my teeth.

I’ve been having an extremely hard time with this new food regimen. Eighty milligrams of prednisone makes a body plenty hungry, but still, I tell myself, I should be able to manage. I’ve done more difficult things than eschew pasta and chocolate chip cookies in the name of fighting this disease. I took methotrexate and wanted to barf for days on end. I injected myself with Enbrel and watched the needle marks well into six-inch painful “injection-site reactions.” I’ve put off trying to conceive or adopt a much-wanted second child. I’ve undergone almost every kind of cardiac testing known to the field, including two heart catheterizations, and even geared myself up to have a defibrillator implanted in my chest, until the doctors blessedly decided that this could be postponed. I’ve strolled through hospital halls from Montana to Mount Sinai in New York with my ever-enlarging ass hanging out the back of insubstantial gowns to have my lungs, liver, heart, brain, and nerves, biopsied or evaluated. I snort saline solution thrice daily to ward off sinus infections. For six months I breathed into the rubberized mask of BIPAP, a sleep apnea machine, when my cardiologist thought that my right-heart enlargement might be aggravated by possible sleep apnea. It wasn’t. You get the idea. I’m not opposed to the idea of compromise or personal inconvenience in the name of getting well. Except, apparently, when it involves carbohydrates.

It baffles me because I’ve always been such a good patient. Why then, do I chafe at my carbohydrate restrictions? Why do I take my doctor’s orders as a personal affront—or, rather, almost like a challenge? Compared to the lovely day when I had a dual endoscopy/colonoscopy, a few less pieces of bread should be a piece of cake — or maybe pie. Yet I want to — almost need to — break as many carbohydrate rules as possible, to wallow in the glory of pasta, bread, and dessert. I stave off the desire most of the time. But I break down too often. I’ll eat seven cookies in quick succession, or half a pie in the middle of the night. I’ll loathe myself for being such a bad patient. I vow, never again will I do this. Until the next apple pie or batch of cookies arrives.

I’m not so clueless as to think my problems are about an unfulfilled sweet tooth and a hearty appetite. My sugary binges are all about control — or the total lack of it. Oddly enough, I once witnessed this scenario of a diabetic disobeying doctors and damaging herself from the other side. I was on the outside, living obliviously in the the land of the healthy. Although I didn’t fully understand the situation then, revisiting it now helps me make sense of my own erratic behavior.

A few years ago, Jay and I took spinning classes at the local gym. The instructor was a bike racer — and a good one at that. But chatting after class one day, as we wiped the sweat off our stationary bikes, he mentioned that he hadn’t always been the thin, muscular, motivational guy who spent his lunch breaks leading group stationary cycling and his Saturdays slogging out hundred mile rides on Montana highways. He had been overweight, listless, a smoker.

I ended up hiring him as a personal trainer to put together a strengthening program for my own bike racing season. We never became friends, exactly, but as I gasped beneath heavy squat racks and lunged forward with a bar on my shoulder, we’d swap a few personal details. He liked to hear stories about my glory days as a cyclist, back when I trained with the big wigs at the Olympic Training Center in Colorado and met (and raced against) some folks who went on to become pretty famous in cycling circles. I wanted stories from his day job as a drug and alcohol counselor. Truthfully, though, besides a passion for going fast on two wheels and for hearing tales about people skating (and crashing) close to the edge of their choice, we didn’t have much in common. That’s why I was surprised when one day, as I was in the midst of some torturous exercise, he turned to personal matters and said that his marriage was falling apart. His wife, he said, hadn’t made the transition from plump smoker to lean, mean, cycling machine as he had. She was a diabetic, but she took very bad care of herself, he said. It had become too painful for him to watch her health deteriorate while his soared. He was moving on. They divorced a few months later.

His pain was real, and my sympathy for him was genuine. As to her, though, I was a simpleton in the realm of compassion. “Why doesn’t she just lose weight and take her diabetes medications and go on bike rides with him?” I wondered, with the befuddled earnestness the healthy sometimes carry with them onto twisted streets of chronic town. How could she sit back and eat sweets while her husband packed his bags and the diabetes destroyed her nerves? Didn’t she have any self-control?

Back then I didn’t understand how chronic illness can turn everything on its head and warp the meanings of our intentions and actions. Trying to understand why you do something — or what something means — is a lot like excavating an ancient city — the polis of the self. But instead of chipping away through rocks, pottery shards, and the detritus of daily life that remains, you have to get beneath the mood-altering medications, chronic pain, endless medical tests, ongoing fear, surgeries, hospitalizations, and the looming thought of death. Then you’ll reach the place where reason and reasonableness and reasonable behavior don’t always reign. You’ll be far below the strictures of logic. You are at the base layer of chronic town. You’ve dug down to control.

In this place, sometimes the only way to regain a piece of control, sometimes the only way to survive the weight of illness is to abdicate control — to grab a handful of pie and not do the very things to care for yourself. When your body is no longer your own, when it is assaulted by disease, pumped full of drugs, and prodded on a regular basis by a parade of white coats, reclaiming control means eating the pie. With each bite, you say to yourself and the faceless white coats in your mind, “This is mine.” My spinning instructor’s wife probably felt both her least and most in control of her diabetes when she cheated on her carbs and chose a Seinfeld re-rerun over an aerobics class with her husband.

Funny isn’t it, how that simpleton’s compassion can come back and bite you in the ass? Now I’m the diabetic with a super-fit husband. Jay has shown only unconditional love and support, but I can’t quite believe that some day he won’t head for the hills with someone who can match his aerobic capacity. I know that Jay wants me to take better care of myself on the blood glucose front. I should be logging every carbohydrate I chew and calorie that I ingest. I should be losing weight — or at least giving it the old college try — so that my beleaguered body might have an easier time withstanding the ravages of both my disease and its treatment. But here’s the rub. I don’t want to. And it’s not like I’m thinking “I don’t want to” with an adult’s reasonable tone. My inner voice is akin to Andrew’s when I’m forcing him to floss his molars or blow his nose. The voice is loud; it’s petulant; and it adores apple pie. I don’t want to.

It makes sense that my new food restrictions chafe with extra force. Plenty of people struggle with making the shift to a diabetic diet, even if they haven’t had four years as a medical pin cushion as a run-up. Food taps into our primal selves. It is linked with our survival, our communities, our cultures. I wrote my undergraduate thesis on medieval women mystics who used their bodies — especially by withholding food (even to the point of starving themselves to death) — in their spiritual practice. For them, going without food was a vehicle that drove them closer to God.

And, as every anorexic worth her salt can tell you, food — perhaps because it links into a nerve center as complex as it does — is about control.

Pardon a little excursion down a self-pity path, but I have no control — zero — in my life now. Because my immune system is so weakened from the daily bombardment of prednisone and the monthly one of Remicade, I have been ordered by my doctors to avoid coming into contact with potentially sick people (i.e., the world). I’m lucky to have good enough friends that I’ve had lots of visitors, but still, an outing to the grocery store sounds downright exotic. Even if I wanted to break out and head to Safeway, I’ve been forbidden to drive because of my sarcoidosis-induced vertigo and the cocktail of drugs I swallow every morning. If I bribed the babysitter to drive me, I can’t be in the car (even as a passenger for more than about ten minutes) before the seasick feeling sets in. I have to cover my eyes with a shade like some Victorian neurasthenic and pretend I’m not moving through space at what feels like disturbingly impossible speeds. As I’ve mentioned in earlier entries, the new neurological impact of my disease has made it difficult for me to read or write. Since I’m a writer, I’ve lost my income (which was never that grand to start with, I admit, but still, it was mine). The horrible headaches keep me bedridden and unable to care for my kid. I listen to expensive, but very good babysitters, raise him.

Since nothing in my life feels like my own, you would think that being able to control one aspect of my illness — my food and its direct impact on how I feel — would make me want to count every carbohydrate that even thought about sneaking into my body. You would think that I would want to chew on nothing but celery and cabbage in the hopes of reclaiming my face, which, with the prednisone bloating and the extra weight, is unrecognizable to me. (I have no neck, and it looks as if I’m storing up acorns in my cheeks. ) But, no, I want to eat spoonfuls of cookie dough, chased with pound cake and a bag of chips. I am ashamed to be such a bad patient, such a bad person, such a fatty. Who knows? Maybe being able to loathe myself on cue is my way of asserting my autonomy.

I wish I could close this essay on a hopeful note, that I could tell you that I have figured out a way to turn the feeling of being completely out of control — in my body, in my life, in my marriage, in my family, in my world — in a new direction. I am doing the best I can. I record my bloods sugar levels and I loosely log my carbs. I try deep breathing exercises when Andrew and the babysitter are making cookies. But yesterday, when my doctor called to tell me that I might need to get a bronchoscopy (where they run a tube down into your lungs) to isolate the pneumonia bug that seems to be resisting all the best antibiotics they are shooting into me, all I wanted to do was head down to the kitchen and shove something sweet into my mouth. I didn’t, but it was a close call. I found out later that I don’t need the bronchoscopy because the CT scan showed improvement. I would have endured the tube in my throat and the indignities of minor surgery. But I’m not sure I could have done it without a cookie beforehand.

Sometimes I wonder if we didn’t get our geography all wrong. Maybe the world is flat, like medieval cartographers once imagined. I certainly do feel as though I have fallen off the edge of a flat planet. But there aren’t puffy clouds and cerulean skies to greet me on the windswept end of the land - only a sick room I’m not leaving, strange manifestations of a strange disease, and my once familiar life becoming more distant, more like a movie I watched a few months ago. The round earthers have never made it to Chronic Town, I guess, where many of the streets drop off into oblivion and the rules that govern the rest of the world don’t apply.

My personal world narrowed even more a few days ago when I was hospitalized with pneumonia. I caught a cold from Andrew, my son, who at four, is a walking virus. The cold became what I thought was a sinus infection, and my doctor prescribed a course of antibiotics. The only weird thing was that I couldn’t breathe walking up the stairs. I’d rest at the top landing, panting, as though I had just scaled the mountain behind our house. I was irritated when my doctor ordered a chest x-ray. How could I have pneumonia when I wasn’t even coughing?

I did have pneumonia. (The coughing came later. And plenty of it.) My doctor called at six in the evening with the results of the chest x-ray and the order to go to the hospital for admission. I was napping, and our babysitter was about to leave. The pneumonia was mild, the doctor said, but the high dose of prednisone and Remicade I take, supposedly to cure my sarcoidosis, make lung infections particularly pernicious and particularly quick to become deadly. She said that once she had dallied a day before hospitalizing a patient with a chest x-ray and a medicine cabinet comparable to mine. In twenty-four hours that poor fellow’s pneumonia had blossomed into tuberculosis and pneumocystis pneumonia (a lung infection more common in AIDS patients.)

So, we went to the hospital. But not before I had to explain to my son in my brightest tones possible that Mommy had to go sleep in the hospital to have special medicine put in my veins. He was understandably resistant. After all, the last time I went to the hospital, I stayed there for days, and came home a changed mother - one with constant headaches and balance problems. “No,” he sobbed, clinging to my leg, “I don’t want you to leave.” That did good things to my Mommy guilt stockpile. Meanwhile, Jay called my parents to deliver the news. Without us even having to ask, they packed their bags and prepared to make the four hour trip the next morning. Upon learning that Grandma and Grandpa were coming, Andrew stopped crying and started celebrating. (I was glad for his mood shift, but, still, is my son so cheap that even the promise of grandparently doting quells his fears of going motherless?) I packed a bag slowly. I even made a pot of coffee and frothed up for myself a passable sugar-free vanilla latte before we headed out the door.

The sheer banality — the lack of sturm und drang — was disconcerting in itself. Usually, trips to the hospital are adrenaline-laced. In November, I thought I was having a stroke as Jay sped down darkened streets in the middle of the night to deliver me to the emergency room. In happier times, we had both sweated and stressed our way to the hospital for Andrew’s birth. But this was so bland, so blasé, so terribly everyday. Then it hit me. Yes, every day. This is my life now in Chronic Town. Routine hospitalizations, constant medical disruptions. Jay told me later that our babysitter, who has only worked with us for a few weeks and doesn’t know how frequently some health crisis erupts with us, was terribly worried and upset. Hospitals mean death and disease. Poor Rebecca must be very sick, right? I guess. But it’s as if all Jay and I could muster emotionally, once we calmed our son, was a shared shrug and a cup of coffee.

I only had to stay in the hospital for three nights. Pumped full of antibiotics I can’t pronounce, much less remember, I returned home to my bed. The irony is that some of the problems that plagued me since my last hospitalization and my latest flareup of sarcoidosis in my brain had seemed to be easing somewhat before the pneumonia. I could read part of a magazine article with only mild sea sicknesses ensuing. I could work at the computer for close to an hour a day and was chipping away at some essays to post here. And doing so didn’t make me either throw up or fall over (as long as I didn’t push it too much). Best yet, the day before the pneumonia struck, I had taken a walk with Andrew and Jay. This was the first time, since before Thanksgiving, that my small family had simply ventured forth for fun - to tromp in the snow, to begin building a snow fort, to make up stories as we walked on the squeaky winter ground. The sunlight didn’t blind me, and my balance was nearly steady.

I feel worse again now. Who knows if my returned neurological symptoms are from the drugs they gave me in the hospital, the stress of being in the hospital, or simply from missing a dose of Remicade? Maybe all the coughing is just making my headache worse, or the quantity of phlegm in my head and sinuses is re-impinging on already inflamed cranial nerves. Your guess is as good as mine - or my doctors’. Once, this loss of momentum would likely have bothered me much more than it is now, and I would have pitched an inner fit. Once, I would have been more concerned that my pneumonia isn’t really improving and that I had to return today to the doctor for new IV antibiotics (outpatient luckily). But all that struggling and worrying feel like too much work, here at the end of one of Chronic Town’s streets. Illness has become our way of life. It has become normal - a virtual routine for me, my husband, my son. And that bothers me more than the thought of free-falling off the edge of our supposedly round world.

Hi all–

Jay again, with another brief update. Well, maybe it’s not so much of an update, as that seems to imply something new. What we have on our hands instead feels more like a holding pattern. Bec still feels really poorly and continues to have difficulty (and much nausea) reading and writing. She appreciates all of the care and concern you, her loyal readers, have and continue to express, and she looks forward to getting back to posting more regularly just as soon as she is able.