Responsible Programming

June 29, 2006 at 11:54 am (Uncategorized)

I’m calling for a moratorium on all depictions of children dying on television. If I had my druthers, I’d just ban the whole concept of children dying – on television or in life. Come to think of it, I’d do away with the dying thing in general. But, as my daily lamentations about illness and injury must make abundantly clear, I just don’t have that kind of pull with the powers that be. So I’m focusing on something attainable.

I don’t know what happened in the world of network and cable executives, but there has been a spate of little ones meeting untimely ends. Rescue Me, Dennis Leary’s portrait of a New York firefighter, ended last season with Leary’s son being struck and killed by a drunk driver. This season finds Leary having to deal with this loss. For instance, in this week’s episode, he comes across his son’s baseball glove and later sees the boy twiddling with a Game Boy next to him in the car. These scenes are so spare – so achingly real in the way they pop into Leary’s life out of nowhere – that they rip your guts out. Then there’s Deadwood, which also closed out last season with a kid dying, this time trampled by a horse. Of course, there was an agonizing deathbed scene in which the parents talk to their unconscious son. House typically seems to relish inflicting children (even babies!) with horrible diseases, and killing them off with regularity. A recent Medium had Patricia Arquette comforting the ghost of a dead child and helping him leave the earth.

These are all excellent programs – examples, in my opinion, of why television isn’t merely the vast wasteland some claim it to be. Dig a little and you’ll find these gems buried in the rubble and ruin of American Idol and Dancing with the Stars. I know that part of what makes Rescue Me and Deadwood so good is that they don’t shy away from the darker aspects of the human condition (and the human soul). Children die, and their parents don’t quite know how to go on living after this. I’m all for quality programming, but my God, enough is enough!

I have a suspicion that I’m a tad oversensitive when it comes to watching other beings, especially innocents, suffer. One day about ten years ago while flipping through the channels, I ran across a documentary about gorillas that had been taught to communicate with humans in rudimentary sign language in a lab and were later being used for pharmaceutical studies. One of the sign language researchers tracked down one of the gorillas and it started frantically signing from inside its small cage. I cried (well, actually sobbed) for about five hours. I made a puddle on the floor. Even now, when I think of that gorilla, I get a little misty-eyed.

Maybe I’m thin skinned because I grew up not watching much television. My parents thought we had better things to do, so aimlessly surfing wasn’t an option. As a result, I’m completely lacking the reference points of The Brady Bunch, Three’s Company, Happy Days and whatever else my generation grew up with. I don’t mind. I read a lot of books, grew bacteria to analyze under my microscope, and started a novel when I was nine.

But the dying kid thing strikes at a deeper level than the gorillas. I don’t so much feel like crying when I watch these scenes in Rescue Me or Deadwood. Rather I feel a shadow pass over my soul leaving me with a darkness in my chest. Because I know it’s so damn possible to have a kid die. Now that I have one, it seems miraculous that they live through birth, much less childhood. Fragile doesn’t even begin to describe the human condition. The most recent edition of Granta, a British quarterly of new writing, has a photo essay of quadrapalegics and parapalegics detailing how these people were paralyzed. Most weren’t injured in car crashes or by diving into empty swimming pools. No, these photos brought to life the trauma of everyday, ordinary living. One woman slipped and fell on the sidewalk, another in the shower. One boy broke his neck jumping into the ocean. One minute everything proceeds neatly according to plans. But then it’s as if in the middle of mundane living – running errands, driving to a concert, crossing the street – tectonic plates of tragedy and trauma bump together. And everything changes.

I don’t know if I’m unusual because I tend to look for those plates and expect an earthquake. Maybe most other people do too. I come from a long line of proud pessimists whose unspoken motto is, “Expect the worst and then you’ll never be surprised.” I’ve been like this long before I got sick and was forced to dwell on my mortality. My heart problems and the uncertainty of sarcoidosis certainly have upped the ante when my thoughts turn to darker things, but this vision of the world was there all along.

Because I was diagnosed with this illness at almost precisely the same time that I gave birth to Andrew, I have spent time trying to come to grips with my mortality in the midst of the joy of witnessing new life. This can get confusing and sometimes a little depressing. Every milestone that Andrew achieves – his first steps, his first words, the first time he told me to “go away” so he could pee in private – make me as proud as any parent. But they also make me melancholy. Perhaps every mother feels this way; I don’t know because I never had the opportunity to be a mother when I was not sick. But beneath each of Andrew’s accomplishments, I sometimes hear the dragging and rasping of those tectonic plates. He is growing up too fast, moving away from me too fast, changing too fast. Every step could be fraught, every passing car could careen out of control. A cell could mutate and become malignant.

And this is a horrible way to look at the world, to look at my son’s place in it. It is a horrible way to live. And I refuse to do it. I believe it is possible to change my thoughts – or at least to clamp my hands over my hears so I don’t hear those god-awful plates. This is why I hate the reminders brought to me by Rescue Me and company. I am all too aware that drunk drivers come flying out of alleys. I am all too aware of how small my son is. I am all too aware of how quickly life can change. Maybe there’s something to be said for American Idol. There’s no dead kids to contend with.

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June 28, 2006 at 11:45 am (Uncategorized)

Last night was a terrible night. A horrible night. A night of feeling helpless and worried and scared.

Andrew caught some variation of the flu, and around 3 AM he spiked a fever in the vicinity of 104 degrees. We gave him Tylenol; we gave him Advil; we pumped him full of fluids and put a cold washcloth on his forehead. And his fever would not budge.

Jay and I are still figuring out this parenting thing. Should we dash him to the emergency room? Call his pediatrician in the middle of the night? Make a burnt offering in the hallway? While Jay held Andrew and made the universal clucking sounds that parents make when they’re comforting their children, I read the children’s health guide that has proved to be the single best baby present in the history of the world. Don’t totally freak out, the book said (though slightly more eloquently than that), your kid’s brain is not going to fry unless his temperature goes to 106.

I’ll give it a half an hour, I thought, and held my hot bundle of boy as he whimpered and shivered. The cat circled him, acting pretty worried herself, before finally nestling up against him. About twenty-nine minutes into the allotted thirty, Andrew’s fever dropped to 102. I took a breath, and realized every muscle in my body was clenched.

This is the normal stuff of parenting. Kids get sick; they run high fevers; they make their parents crazy with anxiety. And Andrew was such a sweet little patient. He asked for his favorite stories and then embellished them along with me in a voice as pure as a choirboy’s. He fell asleep around seven o’clock, and finally woke up after noon. He is still sick, but better.

There is nothing like helplessly watching the person you love most in the world suffer to make you realize how trivial the rest of your concerns are. As Andrew shook and shivered, I had a couple of moments of absolute clarity and pure love. I would do anything for this small person– anything. I have been stressed about whether to fly to Jay’s brother’s wedding on Friday while I’m still recovering from pneumonia. I have been stressed about work projects and being away from Jay. I have been stressed about the sarcoidosis and my prednisone taper and my pneumonia. Five minutes with feverish Andrew in my arms drove home to me that everything in my life is small in scale next to this little man. He towers over chronic illnesses, deadlines, and family obligations.

Perspective is one of the things you shed first with a chronic illness. Lurching from health crisis to health crisis, feeling uniformly crummy on a good day, getting dire news that later gets reinterpreted by another doctor. It’s like living in or looking at the world as pre-Renaissance painters created it, before they had developed the technique of perspective. Everything looks oddly close; the scale is wrong. Stare too long at one of these paintings and you’ll start to feel a little seasick.

Andrew restored my perspective last night. He is fine; Jay is fine; I am fine. It’s a better way to look at the world.

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Sinking In

June 27, 2006 at 10:12 am (Uncategorized)

I have a question for all of you readers who have been playing the chronic illness game longer than I have. Does the knowledge of your disease ever sink in permanently, or do you have to continually relearn that your life is fundamentally different? The reason I ask is that I seem to be doing a fairly lousy of job recognizing – and accepting – that, as Yeats said so much more eloquently than I ever could, my life is “changed, changed utterly.”

I’ve only had sarcoidosis for two years, but it seems like in those months I have had to relearn perpetually what it means to have this illness. It means never feeling entirely well, even on good days. It means never being able to take for granted how I will feel tomorrow, or next week. It means I spend much of my free time in doctors’ offices. It means that the scary pronouncements these doctors have delivered will pop into my head at the most inopportune times – watching a movie with my husband, bathing my child, or teaching a writing class. It means the medications I take are usually more bothersome than the disease itself. It means every time I am around a sick person, I will catch their cold, flu, strep throat, stomach bug, whatever. Mostly, it means never being able to get away from sarcoidosis. It pursues me like a jealous ex-lover, catching me eventually, even though I have changed the locks, gotten a new phone number, and taken out a restraining order. Once it has found me, it grabs me with its bony fingers, and then I re-remember, relearn, readjust to my reality. Over and over again.

“Wow. Feeling a tad dark today, Rebecca?” I’m sure you’re thinking. Why yes, I am. I’ve been sick for going on three weeks with pneumonia. Yesterday, during my scintillating day of napping and running a fever, I squeezed in a doctor’s appointment and started my fourth antibiotic. The highlight of my visit with Dr. Doogie of the Blue Eyes was being told that “we’re running out of classes of antibiotics” to give me.

In the midst of all of this, a clearly articulated thought popped into my head – this is the way my life will be for the rest of my life. And it depressed me mightily to learn this anew, yet again. My solution to the re-realization that having a chronic illness sucks was to eat a very large helping of ice cream. Not the most productive outlet for anger, sadness, impatience, and bitterness, but, let me tell you, Dreyers does make an excellent pralines and cream.

Sometime after dinner, though, the fog in my head lifted a little. The sun didn’t shine through, but I didn’t feel quite as though I was in the clouds and mist of Wuthering Heights. What cheered me up was playing an after-supper game of Chutes and Ladders with Andrew and Jay. There’s nothing like watching a two year old’s version of a board game to put things in perspective. Andrew has no concept of winning the game or advancing the pieces. His idea of playing Chutes and Ladders is take the cut-out game pieces, name them, and then have them play together on the “slides” of the board. Last night, he christened Leonard, Bobby, and Annie. Mostly what these three characters did was say, “Hello, my name is…” and then step on each other’s “feet” (the plastic stands they are propped up in) before getting to the important work of sliding.

For a while, I couldn’t decide what was more amusing – watching Andrew say for the fiftieth time, “Hello, my name is Leonard,” or watching his father attempt to enforce some type of rule-based system to the whole process ( “No, Andrew. You spin. See you spin. Spin. And then you go…No. You had a five. That’s five spaces. No. You’re not at the ladder yet…”) before finally giving in to Andrew’s version of the game and saying, “Hello. My name is Bobby” back to Leonard. Who would have thought three years ago that this would be our lives? In all my imagining, I never would have thought that something so silly and prosaic as misplayed Chutes and Ladders would feel as important as it did.

And that’s when it hit me. Having a kid is a whole lot like having a chronic illness (and I don’t mean just because they both are expensive, time-consuming, and mess with your sleep cycle.) Andrew has changed everything about our life – from the small to the grand. Not only have our ambitions and plans changed utterly, but so too have the day-to-day details of our existence. I sometimes think that nothing about our lives now would be recognizable to our pre-baby selves. And just like I’m continually relearning what it means to be sick, so too am relearning what it means to be a mother. Every day.

Perhaps I can learn to approach the vicissitudes of illness with just a pinch of the grace I have when it comes to all things Andrew. I have let him turn my life upside down, and I re-recognize this every time I change poop-laden underwear in Safeway or toss my own book aside to read Frog and Toad or Curious George Takes a Job for the billionth time, or when I plan my days around outings to the town’s construction sites. I have accepted these changes.

Does this mean that having sarcoidosis is a good thing? Does this mean I would turn down a cure or at least a pill that made me feel consistently better? Does this mean I value the sickness? No, no, and no. But I have it, and it has changed everything, no matter how diligently I try to forget that. Maybe instead of running from it, if I slowed down and accepted that everything has “changed, changed utterly,” maybe, I’d get to the poem’s end: “a terrible beauty is born.” Whatever that means.

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June 24, 2006 at 5:21 pm (Uncategorized)

Those of you with children probably won’t be shocked to read that my two-and-a-half year-old son Andrew’s favorite word is “no.” He says it approximately 8,000 times a day. I’ve riffled through about a dozen child-rearing books and have learned that “combativeness in attitude” is fairly common among the three-foot tall and under set. The universal suggestion of these books is to ride out this phase. Like the joys of teething and the tensions of potty training, it, too, will pass. Or so they say.

It’s nice to know my kid is normal, but, still, I’m getting tired of the N-word. What’s especially irritating is that Andrew seems to utilize the word without even thinking. For instance, I’ll ask, “Do you have to go to the potty?” and he’ll produce a bored “no” in a microsecond, but one minute later, he’ll be standing in a pee puddle. Ask him if he’s thirsty, and he’ll say “no.” It doesn’t matter that it’s been five hours since he’s had a sip of water. “Do you want to paint?” No. “Do you want to call Daddy and say hello?” No. And so on. I’m thinking he could star in a revision of Maurice Sendack’s Pierre. Instead of telling his parents, “I don’t care,” the new main character, let’s call him Andre, could learn that answering “no” to every question will likewise get him digested by a lion.

Part of the problem is that Jay and I provide Andrew the opportunity to say “no.” There’s an old saw I picked up while Jay was in law school that you should never ask a witness a question in court that you don’t already know the answer to. The same goes with parenting. We would hear a lot less “no,” if we asked far fewer questions. Instead of saying, “Do you want to come in now and eat dinner, Andrew?” when he is clearly blissful in his sandbox, we should just order him to come in. Sure, he’d kick up a fuss, but at least then we wouldn’t have to try to convince him to change his mind after he predictably says “no.” There’s nothing sadder than a grown-up wheedling with a toddler: “But we’re having your favorite dinner – hot dogs and potato chips and orange soda.  And daddy will juggle while you eat and mommy will stand on her head.” It would be much more sensible to eradicate choice from his mental vocabulary. But, like other parents of liberal leaning, I think we are a little uncomfortable with implementing what could be construed (not least by us) as fascistic control of our offspring.

“No” is an extremely powerful word. It’s a conversational show-stopper. When a weaselly little man at a bar offers to buy a gorgeous woman a drink, and all she tells him is “no,” she’s doing more than responding to his question in the negative. She’s establishing a power relationship. When you beg your boss for an extra day of vacation and she tells you “no” without explaining why, you instantly get the message that you are a peon, not just that you can’t have the additional time off.  Andrew’s not dumb – he already has picked up on many of the language cues that rule us as adults. By saying “no,” Andrew is asserting himself as an individual. I’m sure he understands that “no” brings him power along with telling us he doesn’t want to do something. It must be almost fun for him to tell the people who rule him – his parents – “no.” It must make him feel like the bomb.

Yet unlike my son, “no” is a word and a concept that I am remarkably bad at using myself. When people ask me for something – my time, my skills, money – I almost always say “yes.” It doesn’t matter if I don’t have the money or the time, because I feel weirdly compelled to make people happy, no matter how distant from me they are. I am unfailingly polite: to the Jehovah’s Witnesses who knock on my door and won’t go away, to telemarketers who phone during dinner, to people who are rude to me, to friends who ask for a favor that I don’t really have the time or the energy to do. The funny thing, though, is that it would be better for them and better for me just to say “no” and leave it at that. Then no one would waste their time. But I hate dropping this verbal bomb.

I am of a mixed mind when it comes to Andrew’s “combativeness in attitude.” Part of me feels proud that my little man is strong-willed. I want him to grow up knowing what he wants. I don’t want him to feel, as I sometimes do, pressured into doing things he doesn’t feel comfortable with. There is enough nonsense and badness in this world, that being able to say “no” to it loudly and clearly is a sign of moral rectitude. But another side of me thinks that we should focus on inculcating flexibility as much as we let him say “no.” It’s not just that I’m tired of everything taking seven times longer with him than it should because of his innate two-year old orneriness. It’s that a key part of living is learning to compromise – not just with other people, but with the situations we are given. A person who always says “no” to what is not purely his choosing won’t last long in the “real world” of work, love, and illness.

In any event, it probably doesn’t matter what we actually say to Andrew about “no,” or even if we stop asking him questions and just bully him into doing what we want. As in other realms of his personality development, he will pick up on what he sees us do much more than on how we lecture him. As forthright as I tell him to be, if he watches me waffle with someone instead of saying “no,” he’ll likely end up a waffler too. It’s almost disturbing how much he learns from us. Watching him parrot an expression of mine – complete with inflections and hand gestures – feels right out of the Twilight Zone.

He’s probably absorbing a ton of information about illness right now. In this phase of brain development, which he probably won’t be able to conjure up later as memories, he’s learning about dealing with sickness. I try not to think about this too often, but I know that I am modeling for him how to act if he ever develops a chronic disease, or perhaps how to act when he comes down with the flu. No pressure, right?

The poor guys is having to deal with me being sick more than usual lately. Right after a medical trip to Philadelphia, where he knew that “Mommy had important doctors’ visits,” I came down with pneumonia. I’m still bedridden, still coughing like I belong in a tuberculosis ward, and still noticeably absent from his day-to-day life. He misses me, and I can see that. Today he and Jay went to a birthday party of a friend, but Andrew was adamant that he wanted to stay home with his train and Mommy. I’m glad to know I’ve risen to the same level as his beloved Thomas the Tank Engine. He likes nothing more lately than to lie in bed next to me and stroke my hair. It’s a little weird, but very adorable.

Like my cranky son when he’s asked to leave the park, I want to say “NO!!” to the pneumonia and “NO!!” to the sarcoidosis that makes it more likely I’ll get these secondary infections. Today I wanted nothing more than to ride my bike with Jay and Andrew to the Farmer’s Market and then go off to the birthday party. “Do you want to stay home on a beautiful day and cough?” Why, NO, I don’t. But the sorry truth is that there are some demons you can’t chase off by telling them “no.” Getting out of bed would have only made me sicker – and ultimately taken me away from Andrew for a longer period of time. So I told him I was sorry, that soon I would be well again and that soon we would be playing in the yard and scampering downstairs to see the train set. He didn’t look convinced.

But just as much as I believe it is necessary for me to exist within the parameters of my health and my body, I also think it’s important to push at those same boundaries at other times. There are days when I am exhausted and running a fever, and I say, “To hell with it,” and take Andrew to the park or for a walk up the hill behind our house to watch airplanes. There are days when I want nothing more than to sleep, and I tell myself, “no,” because my life belongs on a broader stage than the bed and there is only so much I can give this illness without putting up a fight.

Today, I was feeling tremendously sorry for myself because I am still sick and because two weeks in bed seem to have done little to improve my condition (and on top of it, I have the nastiest case of thrush in my mouth from taking so many antibiotics with a compromised immune system). All I wanted to do was grab a bag of potato chips and curl up in front of the TV, watch the most brainless program I could find, and become the living embodiment of sloth. But on occasions like these, I have to say “no.” There can be no waffling with this. I don’t want Andrew to peek at me from outside the room and think, “Gee, Mom sure is lazy and depressed. Why is she always laying around getting potato chip crumbs everywhere? I’m sick of her being sick.” So, instead of watching a cooking show, I’ve read to Andrew with him snuggled in bed next to me, even though my voice still sounds like it’s being filtered through gravel. When he scurried off, I read my book. (Somehow reading something just feels more productive than vegging out in front of the TV.)

Anyway, with the thrush in my mouth I wouldn’t really be able to taste the potato chips. And I guess, truth me told, maybe I’m not such a waffler as all that. Andrew’s a chip off the old block. I’m prone to plenty of “combativeness in attitude” myself.

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The God of Apple Fritters

June 23, 2006 at 12:14 pm (Uncategorized)

There’s nothing like simultaneously having a kid and becoming chronically ill to raise some questions about God. What was once a nebulous matter becomes suddenly pressing. Which pieces of your religion do you want to pass on to your child? What do you think will happen after you die? And why are you even having to think about dying when you’re 34? Clearly I’m not the only one wrestling with these issues. Harold Kushner’s book, Why Do Bad Things Happen to Good People, was a bestseller. And type “religion” and “children” into Amazon’s search engine and you’ll discover a lifetime’s worth of reading.

My husband Jay and I have always known that we would have to confront the G-word. This is partly because we were raised in different religions. I’m Catholic and he’s Jewish. While there is plenty of common ground between the two when it comes to morality and ethics, Catholics and Jews decisively part ways when it comes to the question of the Messiah. There’s no getting around the fact that Catholics believe Jesus was the Messiah, while Jews think he was just a nice guy who got the death penalty.

After we decided to get married, Jay and I pledged to ourselves to raise our hypothetical child to understand both of our religions of origin (let’s call them our ROO). In our minds, there was no reason we couldn’t celebrate Christmas and Passover, Easter and Rosh Hashannah. If it ever came to choosing a religion, we would arm our hypothetical kid with knowledge of both Catholicism and Judaism and let him or her pick the path to follow.

The only flaw in this logic is that neither Jay nor I are what you would call tremendously religious people. To instill our now no longer hypothetical but very much real son with the nitty gritties of our ROO would involve practicing them with some degree of diligence. I feel lousy and sick a lot of the time, so rising early to go to Mass on a Sunday is often the last thing I want to do. Jay feels the same way about running home from work to light the Shabbat candles on a Friday evening. Then there’s the tiny problem that both Jay and I have some concerns with aspects of our ROO. It’s tough to think about drilling religion into Andrew’s brain when we aren’t sure we like everything about our faiths – it sometimes feels it’d be trepanning more than kindly planting ROO seeds.

So, for the first two years of Andrew’s life we’ve done what any sensible person in our situation would do. We’ve half-assed it. We’ve practiced a Judaism and Catholicism-lite. We go to Church sporadically, but always make the biggies – Christmas and Easter. We celebrate the major Jewish holidays and play Jewish music CDs. I make a mean loaf of challah. But there’s been a distinct lack of rigor about the whole project. And that’s actually been OK with us because Jay and I don’t like zealotry. The last thing we want to do is raise a little fundamentalist, regardless of the stripe. I know we’ve disappointed both of our families, but, as we remind ourselves, our parents got to raise us exactly how they wanted. Now it’s our turn to mess up a generation.

The other day someone asked me if I was not actively participating in Catholicism because of sarcoidosis. She wondered if I had a hard time believing in a God who would allow me to become ill, especially at a time in my life that I expected to be joyful and good. Underlying her question, I think, was the short-fused problem that plagues all religions all the time. The title of Kushner’s book says it succinctly. How indeed can a just and good God allow suffering and pain? It’s all very un-Godlike given the tenets of faith.

As I told my friend, getting sick hasn’t damaged my lukewarm faith. No, my God train has kept puttering along at the same low speed. As I’ve written here before, though, what getting sick has done is make me pay attention more closely to the suffering around me, which has made me realize that having a chronic illness in the wealthiest country in the world isn’t the worse thing that could happen to me – especially since I have health insurance. But thinking about all the kids perishing in far-away countries because they had the misfortune to be born under a stupid dictator or during a drought does make me wonder about God’s supposed omnipotence and omniscience. However, just like my own illness hasn’t pushed me outside the walls of the faith, the monumental suffering in the world isn’t necessarily deal breaker for me.

I suppose this is because I am comfortable with the concept of the divine as a remote, non-interventionist force. It’s only when I begin thinking of God working daily miracles in people’s lives – that he might cure the chronically ill or prevent a bomb from dropping on one baby’s crib – that I start to feel squeamish. Because then I have to come to terms with the fact that if God were to choose to heal me, then it would also within his power to heal everyone. And he’s not.

In truth, I’ve never felt inclined to enter the camp of the interventionists. I remember when I was a teenager and a very good bicyclist, one of our neighbors in our Louisiana subdivision told me that I should be thankful to Jesus that I was such an excellent athlete and was winning so many races. “Why?” I asked, not even bothering to hide the snottiness in my tone, “Is Jesus out here training five hours a day?” (This same person also tried to exorcise demons from my mother’s injured arm.)

I used to think that the only people who believed in a meddling God were the wacko Christian fundamentalists – like my Louisiana neighbor. But I have come to realize in the past few years that this view of divine power is also shared by some of the touchiest-feeliest people out there. And it still makes me crazy and queasy to hear about it, even if the person proposing that God is a busy bee buzzing around the world fixing things is a nice liberal living in California. Take Anne Lamott. This author of books about spirituality and writing was a drunk and a drug addict who turned her life around – with the help of Jesus – when she discovered she was pregnant. She’s a great writer – very droll and ironic – but sometimes very, very messed up. I just read an essay by her in this month’s Oprah magazine (I told you, I love reading trashy magazine when I am at the doctor’s or the gym) about overcoming an overeating episode. Lamott used to be a bulimic, but she conquered that bad behavior along with the booze and the cocaine when she found religion. But, as this essay relates, she was going through a difficult spell and decided to go on a food binge. Here’s where it gets icky. She went to the grocery store to pick up some apple fritters, her once-favorite binge food, and discovered that the store was out of them: “In the history of Safeways, they have never once run out apple fritters. I understood instantly that God was doing for me what I could not do for myself.” Excuse me? God is buying up all the apple fritters so that you don’t eat them? What’s next? He’ll do the stairmaster for you and then magically apply the calorie deficit to you? I mean, he’s God after all. He could do that.

This is the most narcissistic, solipsistic , navel-gazing, and self-serving notion of God I have encountered in a long while. For her, God isn’t the ruler of the universe, the dispenser of justice, the mightiest of the mighties. No, he’s a helpful buddy in the quest for self-fulfillment that preoccupies Americans. He’s not emerging from the whirlwind as he did with Job, bellowing, “Where were you when I laid the foundation of the earth…Or shut the seas with doors.” Lamott’s God is a twelve-stepper like the rest of us, working miracles through the apple fritters, fretting about waistlines. But what about the people without apple fritters to worry about – or bread and water for that matter? Why isn’t God extending a warm, soft hand to help them?

I know a lot of people who believe in Lamott’s God. Many of them don’t actually bow down to a single, unified deity. Instead, they talk about “the universe,” as in, “I’m ill right now because the universe wants me to learn to deal with my issues of powerlessness” or “This divorce is putting me right where the universe wants me.” It’s a notion of the cosmos as an ordered, thinking sphere, ruled by forces of, if not benevolence, then of planning. It’s not what I think of when I think of the universe – I hear the winds of space ripping across planets, stars imploding, asteroids careening towards Earth, cosmic dust settling in the blackness. I see my own version of the monumental and impressive whirlwind of the Old Testament. It is so grand, so massive, so impressive, that, as God reminds Job, it is completely outside our understanding.

Which brings me back to Andrew and my goals for his religious education. What do I want to pass along to Andrew? I certainly don’t want to raise a child who is so self-absorbed that he thinks God is buying up the apple fritters. Or a boy who thinks his religion has given him all the answers and that’s why he gets God’s help. I want him to feel the mystery and the smallness that I feel when I stand beneath the black dome of the sky at night and watch the stars. Some of these stars are so far away that even though they have ceased to exist, we still keep receiving their light. I want him to feel the common threads of humanity and life that bind us. I want him to wonder – to wonder about what forces made us and then reclaim us and also to wonder at the power of it all. I guess what I want is for Andrew to believe in forces outside himself. I want his spirituality to push him to transcend himself, to remind him that not everything is about him. Will he get this in a church or a synagogue? I don’t know. To be honest, I don’t know how I feel about my or Jay’s ROO. I don’t know. But not knowing and being a little afraid feels like a good place to start.

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Help? Help!

June 21, 2006 at 10:35 am (Uncategorized)

Yesterday I got a package that contained a handmade quilted wall hanging from a group of women, The Cross Country Piecemakers, in Roundup, Montana. On the back of the hanging they had stitched a little note that said, “We hope this brightens your day and lets you know our hearts are with you.” I know only one of these women – a friend of my parents’ – and loosely at that, but the group had heard from my mother that I was sick and so they had wanted to do something nice for me.


When I got back from Philadelphia, I came home to a clean house. The bathrooms were spotless, the wood floors glowed, and the conspicuous layer of dust that usually covers everything in our home was absent. Although I secretly hoped that Jay had finally noticed that there actually is such a thing as dust and had cleaned, he hadn’t had to do any of the work. That’s because my sister hired a cleaning crew to come in to spiff the place up for us. She makes it possible for us to have our home professionally cleaned once a month. Not living in squalor – and not having to actually expend energy to clean the squalor – makes life feel a little more livable.


As I’m typing this right now, Andrew is upstairs playing with Andrea. Andrea is the best babysitter in the world; she has fun with Andrew and encourages his creativity, but she also sets limits with him and doesn’t put up with much of his crap. The only reason we can afford to have someone of the caliber of Andrea is because Jay’s Mom generously pays for most of her salary. She also sends cards, good books, and reminds us constantly that we are not alone with this.

Every time I have surgery, get sick, or tell my parents that I’m feeling blue, they offer immediately to come and help me and Jay. Usually, I take them up on it. I don’t think my parents are enjoying a mellow retirement thanks to me and my illness. Every three months, at least one of them flies across the country at their expense to be with Andrew while I see doctors. When Jay has to travel for work, my Mom usually comes to visit – even when she’s sick or injured. My Mom just got a statewide museum show commission and my Dad is busy working on at least a dozen writing projects, but they routinely put everything aside to come help us. They even took in my beloved dog when it became clear she could no longer live with us; they’ve given us so many gifts that make our lives a little nicer that I’m surprised we haven’t bankrupted them.


Spending most of our disposable (and not so disposable) income on medical bills and medical traveling means that Jay and I often are short of funds when it comes to, say, buying groceries. Jay’s Dad and his step-father Don have “loaned” us a ton of money to pay for plane tickets, diapers, and small luxuries like music class for Andrew. My big brother Ken forgave us a significant debt (which we’re still determined to repay) that we used to pay for hotels in Denver for my treatment. My brother Larry is all but going to give us a car to replace the one we lost in January when Jay got rear-ended.

My friend Amy moved out to Montana last summer to help us for three months. She did our dishes, went to doctors’ appointments with me and listened to their grim predictions, and took Andrew early in the morning so I could get extra sleep. She eventually had to go back to work, but we still talk almost every day. Whenever I have some health crisis, her first response is to offer to come out from California to once again lend a hand. I know that whenever I have a terrible day, I can call her and weep and wail and bitch and moan – and that she will think no less of me.


I have three siblings who are more like friends than family. I sometimes hate telling them bad medical news because I swear it upsets them more than me.

I believe my parents have most of the people in this world praying and rooting for me. Jay’s Mom has covered the rest. And Jay’s Dad and his step-father Don prove there is such a thing as divine intervention by sending us frequent care packages of Harry and David goodies.

Not many days go by without someone calling or writing me to tell me that they’re worried about me or that they want to know about my latest appointment or medical news. A couple of days ago my niece and god daughter (and coolest darn girl in the whole world) sent me an e-mail just to check up on me.

Our friends in Helena, Martha and Geoff, are like family. Whenever Jay is traveling for work and my Mom isn’t in town taking care of six million things, I routinely show up at their doorstep for beer and dinner. Andrew adores their older children.


My cousin Susan, who has health problems that dwarf mine, routinely writes me letters and sends me cards and little presents that cheer me up.


My Aunt Dorothy put together this blog for me, so that all I have to do is cut and paste my entries into the template each day. We routinely get calls – and packages for Andrew – from Jay’s Aunt Barbara wishing us well.


Our friends Sarah and Bob will babysit Andrew on two minutes notice, as well as share their holidays with us. Sarah makes sure all my library books are renewed, crafts beautiful pottery pieces for us, and spontaneously drops off sackloads of clothes and toys for Andrew. She also treated me to a massage; I got the gift certificate for it in the mail on a day that was particularly sour. It turned everything around. Their boys Max and Jacob are the only people in the world Andrew has admitted to the ranks of his “buddies.” “Is Max coming over today?” is Andrew’s almost daily refrain.


My husband Jay, who works full time for the state, frequently has to drive to three of its four corners to try to settle the seemingly insurmountable water disputes between Montana’s Native tribes and its farmers and ranchers. He’s traveled so much for work that he’s racked up something like five months of comp. time. On top of that, he picks up contract legal work from other attorneys whenever he can to help us pay our bills. We’re always scrounging for money (there’s nothing like getting a $20,000 bill from Mt. Sinai Hospital), but never once has he suggested I settle for anything less than the best medical care available. He often can’t sleep at night and his face wears a tight look some mornings; I know this is from worrying about me and our future. But not once – not even in an argument – has he ever let slip a nasty comment about how my sickness has changed our lives for the worse. I know I would not be like this. I am petty enough that I would “accidently” mention how rarely we have fun and how often we travel to various hospitals. But Jay works two jobs, manages the money, and then runs home the second he is done with work to take Andrew off my hands. When Andrew wakes up in the middle of the night or at five a.m. on a Sunday morning, Jay usually jumps out of bed. “You need your rest,” he says. The question he asks me the most often is not, “Why is this happening to me?” but “What else can I do?”


Reading the myriad ways that people near and far have reached out in ways both small and large to help me is thoroughly overwhelming. I have always considered myself to be independent. Taking money or help from others is not an easy task for me. Amy loves to remind me of the time about ten years ago when I was very sick with a case of Hepatitis A I had picked up from bad water on a trip to Mexico. I was so anemic and frail that I had passed out on the street. Amy heard about this and was worried about me, so she hopped into her car and drove the eighty-odd miles from San Jose to Oakland to make sure I was all right. When she knocked on my door, I opened it and said “What the hell are you doing here?” and then berated her for coming to help me and sent her on her way. “That is classic Rebecca,” she likes to tell me – and anyone else who’s around. And she’s right, that was my standard operating procedure up until recently. In fact, part of me still considers it a personal failure that I can’t “handle” this disease without routinely turning to others. Part of me wants to slam the door on anyone who shows up trying to make my day a little bit more manageable – because to need help is to admit I am mortal. But the truth that I am slowly coming to accept is that I can’t possibly handle my life right now without the goodness and generosity and kindness of our friends and family – and of near-strangers like the Cross Country Piecemakers.

In his Meditation XVII, John Donne quipped that “no man is an island.” During my freshman year of college, I wrote an English term paper on Donne’s poetry, including this famous meditation. Fifteen years of real life have erased from my memory the academic angle I used to analyze the poem. It is only now, when I’m struggling to make sense of my illness, my life, and my place in the world, that this poem moves out of the dry realm of the page and demands a visceral response from me.

All mankind is of one author, and is one volume; when one man dies, one chapter is not torn out of the book, but translated into a better language; and every chapter must be so translated…As therefore the bell that rings to a sermon, calls not upon the preacher only, but upon the congregation to come: so this bell calls us all: but how much more me, who am brought so near the door by this sickness….No man is an island, entire of itself…any man’s death diminishes me, because I am involved in mankind; and therefore never send to know for whom the bell tolls; it tolls for thee.

Reading the passage in its entirety gives me the shivers. To be truthful, anything that drives home the notion of mortality prickles the hair on my arms these days. But this poem goes one step deeper than simply giving me the willies. For now, I am part of a community of the living, it says to me. And to be alive means that I am frail; to be alive means that I am in dire need of the help and goodness of others; and, inevitably, that to be alive means that soon I will no longer be so.

I think I’m like many other Americans. We desperately need to think we are strong and self-sufficient. We think we can go it alone, so we plant ourselves in enormous houses, lock the doors, and never talk to the neighbors. We think that if we can just hold it all together for one more day, we will be able to control all of the chaos and uncertainty writhing just outside our closed front doors. If we ask for help, we will have to open the door and let the whirlwind come through. Better to leave the door bolted; better to pretend there is no pain and ugliness and death and violence on the doorstep, waiting to be let in. Better not to hear the bell tolling.

I am blessed to have friends and family who routinely hammer on the front door. “Let me in,” they demand. And so I undo the deadbolt. Along with the fear of not ever being able to be an island, into my house comes comfort and strength. I am not alone. Thank God I am not alone. And thank you – every single person who holds me in your heart for a moment each day – thank you for keeping me not alone. Thank you for kindness. Thank you for patience. Thank you for your goodness. Most of all, thank you for your help.

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King of Hearts

June 20, 2006 at 12:50 pm (Uncategorized)

I’ve crossed my fingers and my toes. I’m not stepping on any cracks in the sidewalk, walking under any ladders, or breaking any mirrors. And I’m certainly not removing the good luck bracelet the Buddhist monk tied around my wrist in Thailand even though it has turned a sad grey color and is getting smelly. Today, and for the next thirty days, I need all the luck I can get.

Today I began my prednisone taper. I have dropped from 20 mg. a day to alternating days of 17.5 mg. and 20 mg. Because the last time I decreased my prednisone dose, I developed all sorts of odd heart rhythms, the cardiologist at Penn insisted that I wear a so-called 30-day event monitor for this initial phase of the taper. So, I’m hooked up to this little EKG recording device, and if I feel like my heart is misbehaving, I record the episode and then phone in the recording every evening via telemetry. Please don’t ask me what telemetry is; I only know that it sounds like a higher pitched version of the old dial-up modems.

I would be nervous about this taper, except that I continue to feel incredibly sick from the pneumonia. I went to see Dr. Doogie the internist this morning and he said I still have pus pockets (yum!) in my lungs, gave me another antibiotic prescription, and told me it was probably viral pneumonia but to take the third antibiotic anyway. Then I went to the cardiologist’s office to get hooked up to my event monitor.

I suppose I’m translating some of my anxiety about the prednisone decrease and what will happen if I cannot lower the dose without screwing up my heart, by finding everything about my situation highly ironic. For example, I kept chortling to the nurse who placed the monitor on me that it was such a hoot they called these things “event monitors.” I mean, really, what do you think of when I say “event?” Your probably conjure up images of a party, a wedding, some sort of significant festivity, right? Would you ever, in a million years, think of cardiac events – abnormal heart rhythms, heart attacks, sudden death, that type of thing? It’s all so innocuous and nice-sounding. “Oh, I’m just monitoring my events.” It makes you feel more like a wedding planner than a heart patient.

Then, there’s the fact that they call the monitor the “King of Hearts.” I found this really amusing, though Margaret, the nurse with a lovely British accent who kept scraping my skin with sandpaper to affix the electrodes, didn’t seem to agree. But, honestly, is it a good marketing strategy to associate a heart monitoring device with a card game? I guess health is ultimately a game of chance, but who wants to be thinking about odds when we’re talking cardiac issues? Even funnier is the way I associate it with the 1967 movie of the same name, in which a soldier has to take up residence in an insane asylum. Do the makers of cardiac event monitors even have marketing departments? Can’t you just see a bunch of doctors huddled together trying to figure out a brand name? “I know, let’s make the patients think of games of chance and crazy people!!!”

It should have taken Margaret and the rest of the staff at the cardiologist’s office about twenty minutes – tops – to place this thing on me. Instead, it took an hour and a half, which was really no big deal since I brought a book and it was quiet in the reception area. Unfortunately, they had all these magazines nicely fanned out on the table: Oprah, Good Housekeeping, Self, In Style. I’m a complete sucker for trashy magazines. I never buy them, but I love reading them at appointments. It’s part of the whole office visit gestalt for me, and I’ll gladly toss aside my “serious” book for lurid articles about sex, weight loss, more sex, and more weight loss. Anyway, in one of these decidedly middle-brow publications, I ran across an article about the power of positive thinking in dealing with illness. As I believe I’ve mentioned, nothing makes me pissier than the positive thinking brigade.  Not that I believe we should sit around and focus on everything crappy in our lives. But I do despise the notion that we can just will our illnesses away with happy thoughts. The article made a special point about “loving and nurturing” the parts of our bodies afflicted with illness.

As I waited, and waited, and waited some more, I wondered how I think about the organs of my body that are affected by the sarcoidosis. Loving and nurturing were not the adjectives I came up with, particularly when it comes to my heart. I don’t speak with gentle acceptance to my heart. I don’t know that I ever have. Even when my ticker was on its A-Game, I never paid it much attention at all. Now that I have begun an ongoing dialogue, I have taken a decidedly sterner tone with my heart. I talk to my heart with an abrasive inner New Jersey-accented Mom – let’s call her Fran. I picture Fran and her pudgy daughter, my heart, as my heart gets ready for a big date, say prom. Fran is zipping up the shy heart’s satin dress, all the while keeping up a steady stream of reproach. “Oh my Gawd. Look at your right side. It’s awl enlawrged. I can barely zip up this gowgeous dress. What? You don’t like me to point out that you’re looking thick on that right side? Should I, your own mother, nawt bring up your poor function? Do you think you can just keep blaming it awl on those granulomas? Well, maybe you should think about how you got those granulomas. All that running around on the weekend…”

Perhaps mock berating my heart isn’t the nicest thing to do, but it sure is a lot more fun than nurturing and loving it. And maybe it’s inappropriate to snicker in the doctor’s office about the name of a monitoring device. But it keeps me laughing – even when I have pneumonia and am hooked up to electrodes and am worried about what the next day will bring. So, I’ll keep my fingers crossed that this taper goes smoothly. But just in case that doesn’t work, I’ll have Fran prepped and ready for back-up.

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The Cat’s Bed

June 19, 2006 at 7:59 pm (Uncategorized)

Andrew does not go gently into that good night.  No, my little two-year old fights sleep with every muscle fiber, bone, and tendon in small body.  When he does finally fall asleep after squirming, chatting, singing, and sometimes even slapping himself in the face, he always climbs out of his bed at some point in the night and tries to crawl into our bed.

Lately, he has developed an aversion to his own bed.  He says he’d rather sleep on the floor than in bed, and has curled up on the pine boards to prove his point.  It’s hard to see your only child sleeping on the floor, his small frame curled into a comma.  So, we’d take him to bed with us and then ferry him back into his room after he drifted off.  But he’d resurface in our room minutes or hours later.  It was all starting to feel a mite sisyphusian.

We’ve tried to figure out why he has started to hate his once prized “big boy bed.”  We asked him if he was afraid; we asked him if he had fallen out bed and bonked his head; we asked him if he had bad dreams.  All he told us was, “I don’t like it.”  He even asked us to reassemble his crib.
This called for drastic measures.  We tried a brighter wattage night light, and then we bought him a bedside lamp with a timer so that he could read on his own in bed.  We played soothing music in the background to drown out the creaks of the house and the roar of cars driving down the road past his window.  We sang to him.  We made up stories about a boy named Lou who hated falling asleep until he figured out that he could lay in bed and think of all the good things in his life.  Then we encouraged Andrew, like Lou, to dwell on the positive.  “I like my tool set,” Andrew would say, “and my cars and trucks.”  And then he would refuse to stay in his bed, preferring, it seemed, to catalogue the things he liked either in our bed or on the floor.

Finally, three days ago I had a brilliant idea.  We would buy him new sheets – ones that he picked out – and we would place them on his bed with much pomp and circumstance.  My thought was that this would allow Andrew to symbolically reclaim his bed as his own.  Since I’ve been really sick, Jay and Andrew went to the store together and came home with a set of Thomas the Tank Engine sheets and a red fire engine pillow.  Andrew was ecstatic.  He helped wash the sheets and then named all the creepy railroad characters on the sheets: Thomas, Percy, and James.  (I hate Thomas the Tank Engine, and I don’t know why.  There is just something very disturbing about these grinning railroad engines all happily doing their jobs, eager for a bit of praise – “You’re a really useful engine” – from the baldheaded and spongy Sir Topham Hatt.  But Andrew, like every other boy in this nation, is smitten with the personified trains.)

Before bedtime the night before last, we gathered in his room and put the new sheets on his bed.  Jay and I oohed and ahed.  “Boy, I’d really like to sleep in this bed,” I said, trying to stir up some enthusiasm from my son.  “This is your bed, Mommy,” Andrew said back to me.  “And I’ll sleep here.”  Here was the small, round cat bed that Andrew had carried into his bedroom and had been messing with while Jay and I whipped ourselves into a tizzy about the new sheets.  He then proceeded to stuff his almost 40-pound body into the bed that fits our five pound cat; he looked like a plump yogi.

I’m usually pretty good at going with flow with Andrew.  I’m used to spending time in the kitchen making his favorite food, say, potato pancakes, only to have him turn up his nose and hoover down frozen peas instead.  I’ve bought plenty of toys I was sure he would love, but instead, watched as he tossed them aside to play instead with a toilet paper tube, or better yet, a stick.  But the sheets caught me off guard. I knew he would love them, dammit.  It was a brilliant idea.

Jay kept his cool while Andrew dragged the cat bed out onto the little balcony adjoining his bedroom, but I guess he could see the my blood pressure was rising.  I’m not stupid.  I know just how much Thomas the Tank Engine crappy merchandise costs.  Even worse, Andrew was ruining my totally brilliant idea.  “I’ll sleep here,” Andrew said again, folding himself back into the faux-sheepskin bed.  “It’s fine,” Jay whispered to me.  I honestly felt like locking Andrew out on the balcony in his underwear with his precious cat bed and going away.  “See how much you like sleeping out there now,” I would say, as I watched TV downstairs.  It is at moments like these that you realize how truly lucky you are not to be a single parent.

Andrew came back into his room in a few minutes and went downstairs to play with Jay while I stalked off to bed.  A little later, Andrew fell asleep in his own bed, tucked between his branded sheets, and did not show up in our room until seven the next morning.  But by then I had lost the thrill of my incredible genius at coming up with a solution to his bed phobia.  Now all I could think of was how angry I had become that Andrew had not responded to his new sheets in the manner I had expected.  The sheets shamed me more than they pleased me.  That he had actually fallen asleep in his own bed was irrelevant.

I can only imagine how many times I will re-learn this lesson as a parent.  Children do not always conform to their parents’ expectations.  (Lord only knows how much I didn’t.)  You expect them to be decent, polite, and pliant little creatures. Instead, they are actual human beings with their own needs, interests, moods, preferences, and desires.  Andrew might join a fraternity, hate reading, refuse to eat vegetables, play golf – even though my hopes for  him are the exact opposite.  How do you coexist with someone who so clearly has not met your expectations?  I know that I will always love him unconditionally, but I’d be dishonest to say that I don’t want him to grow up to have certain political, intellectual, and social leanings that conform to my own.  We’d all be liars if we didn’t acknowledge the myriad ways we’ve let our parents down and the equally manifold ways our parents remind us of our failures.

I’m sure I’ve spun the drama of the Thomas the Tank Engine sheets far out of proportion.  Perhaps it’s because I’ve been thinking quite a bit about expectations, particularly those I harbor for my own life.  Sometimes having a chronic illness feels eerily like having a toddler.  Both conditions mess with my autonomy, as well as my expectations.  Never once, when I envisioned my life in the future, did I see myself as chronically sick, chronically tired, chronically unable to live up to my expectations of myself.  For instance, yesterday was Father’s Day, but I am still very ill with pneumonia.  So, Jay made me a lovely breakfast of waffles and rhubarb compote, and Jay and Andrew went off kayaking in the sun, while I stayed in bed coughing and feverish.  This was not what I expected from life when I was 34.

I’m beginning to believe that perhaps the single most difficult lesson in life is letting go of expectations that no longer fit.  You simply can’t go around all day long being disappointed in yourself or in others.  It’s hard, though, because so often my expectations bump right up against my dreams.

For now, I’m focusing on mellowing a bit on my concerns for Andrew’s sleeping habits.  We’ve done everything our pediatrician, parents and the book “experts” have counseled us to do, and he’s still a horrible sleeper.  If the Thomas sheets don’t work, I suppose we could always toss him out in the yard in a cat bed.  Otherwise, we’ll just have to take it one night at a time.

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Poor Me

June 17, 2006 at 4:23 pm (Uncategorized)

I’m not having a good day.

It doesn’t help that I’m exhausted. Andrew slept even worse than usual last night. He awoke around 3 AM screaming, “I do not like that animal.” We had to turn on the lights and try to convince him that it was all a bad dream, that there was no vicious animal that had crossed over from the nightmare realm to the bedroom. He finally fell asleep with one eye open, after jerking awake a dozen or so times, mumbling about that “animal.” This morning he was chipper again and even described his nightmare to us. Apparently he was being chased by “a really big animal just like stegosaurus.” “Wow. That sounds really scary,” we said. “His name,” Andrew continued solemnly is “Coyote-O.” Keep in mind this child is two, and that to the best of my knowledge, no one has ever frightened him with either a stegosaurus or a coyote. Where does this stuff come from? I must admit there are moments – few and far between, and usually in the dead hours of the night – that I wish I had a slightly less intelligent and creative little boy. You know, the kind that sleeps.

It also doesn’t help that I still feel incredibly sick. Several people close to me have pointed out that I have, er, unrealistic expectations when it comes to illness. “You have pneumonia,” Jay screamed at me, as I whined about being confined to bed for “another day.” It occurred to me as I tossed and turned in bed, contemplating the pile of magazines and books next to my bed that I am just too wiped out to read, that I am the least likely candidate to succeed at having an acute, much less a chronic, illness. I lose patience with the whole resting and recuperating thing after about two days, at which point I want to tidy up the room, change the bedsheets, go to the gym, write a novel, win the Pulitzer Prize. You know, realistic expectations. But instead of ruling the world after a couple of days of antibiotics. I continue to have this horrible pressure in my chest, a headache, and mid-level lousiness pervading every fiber of my being. Someone told me that pneumonia means you have puss pockets in your lungs. That thought has been horrifying me all day long, along with the fact that my heart has been acting up and doing what feels like a tango in my chest cavity.

Poor me. Puss pockets in my lungs. Palpitations. A headache. A chronic illness on top of it all. A kid that won’t sleep. And a rumpled bed to boot

Once my mind starts executing these circuitous paths of perfect self-pity, it is time to employ one of Andrew’s new favorite words: “HALT!” “That means stop,” Andrew will tell you, if you ask. And that is just what I needed to do. That and remember the most important rule of the universe – things could always be worse, so stop yer complaining.

What do I mean by this? I call it my Back to Earth line of thinking. I probably heard it first from my grandmother, who learned it from her mother, and so on, back to the days of Eve after she was expelled from the Garden and Adam and kids kept mewling about having to wear clothes and work. But my hunch is that trying to keep perspective in the cosmic scale of suffering is decidedly uncool these days. It works for me, though.

Here’s how I steer my thoughts to come Back to Earth. “Yes, it’s true that I have a serious, and possibly fatal, chronic illness. It’s hard, and it sucks, but isn’t life itself a long, slow unwind into death? Waking up in the morning is a potentially fatal condition. Are things really that bad? Stop brooding!”

“Oh my God – That is so 1950s,” I can hear some of you shrieking. “Aren’t you invalidating yourself and your feelings?” Why yes, I am. I’ve had this disease for about two years and it is finally beginning to sink in that feelings are like Coyote-O of Andrew’s nightmare realm. Feelings are not real. They may feel real. But they’re not. Feeling afraid that I’m going to die in my sleep tonight does not mean I will die in my sleep tonight. Sometimes, the best antidote for feelings isn’t to give them the keys to the liquor cabinet, the car and a hundred bucks and tell them, “Now, go express yourself. Drag race through town; down the Scotch. But don’t cause any danger.” No, sometimes, I think it’s best to turn on the bedside lamp, look around the room, and tell myself, “There’s nothing here.”

Being acutely aware of my feelings – of how bad I feel and how lonely I feel and how scared I feel with this disease – does things to my psyche I don’t like. You’d think focusing on suffering and pain would make a person more empathetic. But for me, it doesn’t. I don’t notice all the other people out there who are sick and in pain and alone – unless I shut up my internal yammering and look around me. HALT.

Here’s what I see. There are so many people in my life alone who are far sicker than me and far braver in facing it. I have a cousin who is a warrior – there’s no other word to describe her. She has a defibrillator in her chest that fires hundreds of times a day, and she has to ingest a cocktail of drugs that makes mine look banal. She’s my age, and yet she has had several strokes. Still, every day, she wakes up, gets the kids to school, and does the things she needs to do. She even sends me cheerful cards to make me feel better. I have a friend who has been undergoing chemotherapy constantly for an entire year, and just learned that another friend, who reads this blog and worries about me and always offers to help me, is having surgery on Monday for a tumor. I received the most beautiful e-mail from an old friend of Jay’s who is in remission after battling cancer for two years. Her daughter is almost exactly the same age as Andrew. Sarcoidosis is just starting sounding a lot better.

The circle of sickness extends out from there. While we were in Philadelphia, our hotel was hosting one of Alex’s Lemonade Stands – a national fundraiser for children’s cancer. Children with cancer. Makes puss pockets seems fairly insignificant. And what about the millions of people, most of them children, who die from completely preventable diseases like malaria, every year? I’ve read that what would save their lives is bug-spray treated sleeping nets that cost less than twenty dollars. Twenty dollars. I think my PET scan cost something like $20,000.  You can see where this is heading, and I imagine you’re feeling like I’m being a downer – and a mean, preachy one at that. Yeah, well I have puss pockets in my chest and a big-ass coyote ruling my son’s nights.

We all had to take Introduction of Psychology. Do you remember good old Maslow’s hierarchy of needs? His premise was that there are certain needs, like food and shelter, that are more acute and that must be met before we seek to fulfill “higher” needs like spirituality and relationships. From my limited understanding, I took it to mean that you’ve got to eat before you find love. Herewith I propose Rebecca’s Hierarchy of Suffering. There are some conditions, like having cancer, or living in a war-torn country, or losing your parent to AIDS when you are an infant, that are way, way worse than others – like having sarcoidosis, or gaining weight, or going through a divorce. There are forms of sarcoidosis that are way, way worse than mine. About a month ago, one of the leaders in raising awareness about this disease, Dan Stoddard, died. He was 36 and left behind a toddler. (You can read about his struggles with this disease at

Rebecca’s Hierarchy of Suffering doesn’t have to end in a worldview of doom and gloom. It doesn’t inevitably have to lead us to a dark place where all we see is the pain in the world and in others. It doesn’t make me evaluate suffering and disregard it. Rather it spurs me to compassion. I have a quote from what I believe is the Talmud stuck on post-it note to my computer: “Be kinder than necessary because everyone you meet is fighting some kind of battle.” And that includes me. It propels me to get out of bed and meet the day because, in reality, things are not as bad as they sometimes feel. And today, it is spurring me to get back in bed and stop whining until I am well enough to read a book to Andrew without getting out of breath.

Mostly, though, placing myself in the continuum of suffering makes me appreciate all that I have and all that I will, as a member of the living, lose one day. Today is one of those Montana summer days that would make an atheist believe in God. The air feels scrubbed, and the sun is warm without over-heating. It will be light until 10:00 at night. The poppies have unfurled in our yard, as have the lavender plants and apple blossoms. Earlier today, Andrew and Jay were playing in the driveway, amid the riot of orange and purple from the flowers. Andrew was hurling rocks and furiously pedaling his tricycle, flitting from place to place like a bee drunk on nectar. There was no thought of Coyote-O on his mind. You could tell by the peace and glee on his face. And that is as it should be on a sunny Montana day. Any dark thoughts should be met with one command: HALT.

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Now Hiring

June 16, 2006 at 11:22 am (Uncategorized)

I am currently accepting applications for someone to manage my internal yes-woman.  Clearly I’m not having much success reigning myself in, so I’ve decided to outsource the task.  Applicants should be able to set limits, enforce those limits, and be well-versed in utilizing the word, “No.”  They should also not be prone to guilt and should think only of putting me first.

There’s nothing like spending a couple of days flat on your back feeling like you’re drowning in your own phlegm to put a gal in an introspective mood.  Or maybe it was the codeine cough syrup.  It’s hard to tell.  But in between sulking about being sick yet again and composing miles-long mental lists of all things I need to do, but cannot, I’ve been pondering why it is that I have pneumonia.  Now, I know what my gorgeous doctor told me.  My immune system is compromised by both the sarcoidosis and the prednisone, and the prednisone masks early signs of infection, so one day I feel fine and the next…let the drowning in green gunk begin.

It’s terrific that my illness has afforded me a brief class in immunology for third graders, but I’ve been trying to ask my question on a deeper level.  After all, other people take prednisone and don’t spend their lives lurching from one illness to the next, and having their hottie doctors tell them if they’re not careful they’re going to wind up in the hospital getting IV antibiotics.  (I love it when Dr. Doogie gets stern with me.)

My mother has a theory to explain my latest bout of pneumonia.  She believes that I don’t rest enough, that I don’t spend enough time focusing on my health, that I spend way too much time running around doing things unrelated to my health, and that I perpetually wear myself down trying to please other people.   I’m beginning to think she’s right.  I hate it when that happens.

It’s no coincidence that I got sick one day after returning home from a very stressful week in Philadelphia, followed by two days of intense running around in New York.  The Philadelphia part can’t be helped.  I’ve got to travel to get medical care.  Perhaps there are ways to make these trips more restful, but I must make space – real emotional and physical downtime on either end of these voyages – to travel for healthcare without it devastating me.  The New York part, though, was a classic case of me wanting to make everyone happy, without giving a moment’s thought to what was best for me.  Jay wanted to go there to be at his baby brother’s bachelor party; his father and step-father wanted to show us a good time; Andrew was excited at the prospect of all that vehicular sight-seeing.  “Sure,” I thought.  “That’s no problem.  How hard can it be to dash back and forth between New York and Philly and take care of Andrew and move hotels three times?”  Apparently it was pretty hard on me because sometime in the middle of all this I began to feel broken.  That feeling persists, but with a lot more snot now.

Reading this will likely make Jay feel guilty.  After all, he was the one who specifically asked me if we could structure our trip this way.  He shouldn’t feel bad, though.  I’m the moron who can’t take my own internal temperature.  I’m the one who feels like saying “no” is akin to saying, “I’m incapable” or “I don’t like you.”  The problem is that I hate people who are always blathering on about their “needs.”  I don’t get along with people who always put themselves first, no matter what the cost to others.  And saying to Jay (or to anyone for that matter), “You know, I’d love to go to New York, but the reality is that I will be exhausted and strung out after a week of doctors’ visits, I won’t have much fun and it will probably wear me out and make me cranky – is there any other way we can do this?” feels like a betrayal of myself, of him, and of the way we like to live, that I am becoming one of those folks who are oh so good at taking care of themselves and couching this selfishness in the language of need.

Hence my help-wanted ad.  Since improving my skills with the word, “No,” doesn’t seem to be happening, I’ve decided to follow the lead of Delta Airlines, Dell and most of the rest of corporate America.  I’m outsourcing the management of myself.  From now on, I’ll forward all requests to my back office in India.  Those of you wanting me to fly across the country or host a party or make calls and write press releases for the local non profit or babysit your kid will have to answer to Rajesh (a.k.a. Sean) in Bangalore.  He’s quite skilled in saying, “No.”  Someone around here has to be.

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