I Love My iPod (And Other Strategies of Denial)

May 31, 2006 at 2:43 pm (Uncategorized)

The odds were probably in favor of me writing today about my impending trip to Doctorville. But there’s really nothing more to say. Either my treatment changes, or it stays the same, and either way, I will be vaguely unsatisfied as well as vaguely grateful that things are not as bad as they could be. Anyway, I’m in denial. Ask me why I’m going to Philadelphia tomorrow, and I’ll give you a lovely blank stare. Philadelphia?

No, my topic for the day is my iPod. I love my iPod. It was a Mother’s Day present from Jay and Andrew, though I doubt Andrew had much of a role in picking it out; left to his own devices, he would have selected a miniature garbage truck and then kept it for himself. Before I had my very own iPod, I had no idea how it would revolutionize my life. And no, I only wish Apple was paying me to gush like this.

To understand my relationship with my iPod, you’ll need a little back story. One important aspect of my life is getting exercise, which usually involves going to the gym. I love how I feel once I’ve worked out. There’s nothing like the flush of endorphin, the sense of accomplishment, and the honest fatigue of having slogged out a chunk of time on the elliptical trainer or the stationary bike or the treadmill. When I skip a week or two of exercise, I feel as though toxic sludge has accumulated in my veins and my entire being is greasy. I also get moody and stiff-jointed.

But, even though I know I’ll feel better when I’m done, I still have to overcome the forces of inertia to get myself to the gym and then to make it through a workout. I am one of those people who cannot grind away at exercise with nothing to distract me from the fact that my legs are hurting, I am flailing my arms and legs to stay in place, and only two minutes have passed though they feel like twenty. Even when I was a competitive cyclist and spent hours every week training, I was like this. I consistently tanked in time trial events, which pits individual riders racing against the clock instead of against each other in a giant pack. Forty feet down the road from the time trial start line, I would become acutely aware of how incredibly dull this all was, and I would lose heart. I needed other riders threatening to crash into me or sprint away. Since that’s not likely to happen on the treadmill (at least not without hiring a really edgy personal trainer), at the gym I must listen to music or read something incredibly brainless if I have any hope of lasting longer than those two minutes.

Unfortunately, I am not one of those people who can make do with just any music or any magazine. I most strongly feel that my husband is an alien when I catch sight of him soaking an Economist or Financial Times with sweat while he plows through a workout. When we were living in Palau and he was desperate for American football, I caught him watching European soccer league games while he rode the stationary bike. Now there’s a sport for the insomniac. I’m much more picky.

This pickiness takes two forms and my iPod addresses them both. Pre-iPod (or what I now think of as the dark ages), I was forced to depend on our gym’s two communal CD players that you can claim on a first come first serve basis. This means that you’re just as likely to end up listening to something like Crosby, Stills & Nash or the Beatles as you are something of your own choice. Remember, we live in Montana, which means that alternative radio is Christian light rock, and it seems to be against the law to play any music released after 1979. I don’t know about you, but one whiff of “Yesterday” when I’m trying to get my heart rate above 120 beats per minutes and I lose my will to live. I once had a spinning instructor who insisted on playing Sarah McLachlan. Imagine spinning as hard as you can to that rainy-day music. I’d find myself yawning and dreaming of my down comforter in the middle of the exercise class.

I am not sure what it is about a blog that puts a gal in a confessing mode, but it’s high time I reveal the dark side of my soul. I’m talking about my music of choice for exercise. Now let me preface my dirty little secret with the disclaimer that I truly do have the capacity to listen to songs played on real instruments and that I have a wide range of music I like to hear when I’m not working out. When I’m puttering around the house, I might put on Iris DeMent or AFI or Bill Monroe or Mozart or Louis Armstrong or Lifehouse or the Old 97s or The Clash. But when I am on the elliptical trainer, I want all techno dance music all the time. Gasp. Well, sometimes I want popped out “alternative” music like Blink 182, The Offspring, or Sum 41. But that’s pretty bad too.

Here’s what makes a good workout song in my book. Most important is the beat – the faster the better. I want my music to inspire me to want to keep pace with my exercise machine, not induce narcolepsy. If this means the singer sounds more like Minnie Mouse than an adult, so be it. If this means the song consists of basically three notes replayed at very fast speeds, then fine. Second, the more vacuous the lyrics, the better. There was a time and place for intense teenage angst, and it is no longer now. I do not want to contemplate my mortality, the ultimate destruction of the world, or the general pain of the human existence on the Stairmaster. I spend enough time doing so in my real life. A good dance song has repetitive meaningless lyrics, like “Hit, hit, hit the dance floor,” which banish thought and make me want to move. Even better are the amazing Eurodance songs I found on iTunes. These songs are in various foreign languages, including Romanian and Polish. Listening to them conjures up images of a crowded club in Warsaw, packed with fresh-faced teenagers who exude promise and hope as they writhe and groove across the dance floor, moving their bodies into the future. But best yet, are Eurodance tunes sung in heavily accented English, which makes for some hilarious attempted rhyme schemes, like “I will be sad, sad, sad/If I can’t take you to bed.” There’s just something wonderful and hopeful about these songs. They do not make me want to fall off the elliptical trainer and lurch home, which happened the one time I listened to Nirvana at the gym.

I’ve now downloaded about 100 songs that I am too embarrassed to play in public. I’ve got the complete remixed Erasure oeuvre, along with Blue Ice’s seminal remix of the Supremes’ “You Keep Me Hangin’ On,” O-Zone’s “Dragostea Din Tei,” (which, after seeing Andrew become addicted to this song after one listening, I am convinced is the musical equivalent of crack), and DJ Bobo’s “Love is All Around.” With my iPod, I don’t have to worry about other people listening in on my bad habit. After all, I’m a writing teacher now. I should be listening to Verdi or Coltrane, not “Feel the Vibe.” Plus, my iPod lets me customize my playlist so that whenever I tire of, say, DJ Mangoo’s “Eurodancer,” (though how one could ever have enough of this masterpiece, I’m not sure) I can ditch it and add more Floorkiller.

Even if I were willing to suffer the shame of putting a disk with these tunes in the public CD players, I have another musical itch that the iPod lets me scratch. I can be, um, temperamental when it comes to matching music to my mood. There are days when I simply must listen to Erasure’s “Blue Savannah Sun” four times in a row. The closest Jay and I have ever come to divorce is on long car trips when I nix forty-five songs on his iPod and settle on one that I play over and over. “Don’t you just love this music?” I will say. “Well, I did once,” the sourpuss responds. (I’m happy to report that Andrew has inherited my predilection. On our drive back from Seattle we listened to “Rawhide” at least nineteen times in a row at Andrew’s request.)

The other benefit of the iPod is that it makes me a self-contained unit at the gym. When I go to work out, I don’t want to have to deal with my “real life.” I typically am unwashed when I arrive, and since I come for decompression, the last thing I want to do is chat with someone about my health status, their health status, or any other topic that requires thought. Which can be a problem in Helena, Montana, a town so curiously provincially social that the mayor sidelights by driving a bicycle rickshaw outside the local taproom on weekends. It’s not a small town, but it’s small enough to guarantee that I will see someone I know at the gym. Walking around with headphones and a blasting beat ensures that most of these folks leave me alone. While I know this attitude would earn me a Communitarian group tongue-lashing, I will say in my defense, that being left alone with DJ Magoo for one hour makes me a much nicer person for the other 23 hours of the day.

I’ve tried talking to my friends about my particular distraction needs at the gym, and, to tell you the truth, they’re pretty clueless. “Why don’t you just watch TV like everyone else?” they ask. (Our gym has three televisions you can plug into. One is perpetually tuned to CNN.) The last thing I want to do when I’m exercising is watch the news. Let me provide an example. Yesterday, CNN devoted the entire hour I spent on the elliptical trainer to the civilian deaths at Hadith, Iraq, and the likely role U.S. Marines played in the massacre. Whenever I glanced at the television, I saw images of corpses wrapped in bloody white cloths, or of a scrawny little boy showing a bullet scar in his back, or a ceiling spattered with the blood of a civilian who was shot in the head, or of the accused Marines, none of whom looked old enough to shave, much less kill on their journey into their own hearts of darkness. Even seeing these visuals without the sound was enough to fill me with a sense of the futility and bleakness surrounding us all. I don’t care what your political stripe is, this should make you feel physically sick. I stared, thinking about atonement and how the real politicos would undoubtedly say “This is war,” but I have had too many people like this in my own life (with its problems small in comparison) not to want to hurl my breakfast all over the person next to me. I stopped watching and concentrated on the pulsing rhythm in my ears. Does this make me a bad person?

I’m not advocating wholesale tuning out. I scrupulously try to stay abreast of world, national, and local news with the Economist, the paper, and NPR–just not at the gym.  In my opinion, a key part of being a citizen of the world involves staying somewhat informed. I just need an hour here and there away from the gore of war, the starving children’s faces, the ever-mounting trade deficit. I also need a break from Andrew’s constant and insatiable needs and worries about my health and future. Really, there’s only so much fretting you can do in a day. I certainly am avoiding reality when I shut my brain off and let the cheesiest music in the world take me to a zone that transcends conscious thought. I like my dance music precisely because it helps me not think.

Jay likes to joke that I am Cleopatra, the Queen of De-Nial. There’s a lot of truth to his moniker. I think that surviving a chronic illness (or a crazy world, financial difficulties, rowdy kids, a tweaked back – whatever ails you physically or spiritually) requires that you forget about it when you can. Which can be tough. Worry is a social beast; it likes to collect a pack of friends and go rooting through your mental trashcans just to see how much of a mess can be made. Enter my iPod and my other mechanisms of denial. They work.

Now, if you’ll excuse me, I have a date with Polish techno and a treadmill.

Permalink Leave a Comment

Fear of Flying

May 30, 2006 at 2:05 pm (Uncategorized)

Early in the morning on Thursday, Andrew and I will fly from Montana to Philadelphia for my next round of doctors’ appointments. This will be the first time I have ever flown alone with Andrew. Because of work obligations, Jay won’t be able to join us for another week. I’m meeting my mother in Philly, but the airplane ride with my sometimes cranky toddler is wholly my responsibility. I am scared.

My solution is to support slave labor in China and non-union American jobs. Indirectly. Whenever we travel, it’s time for Mommy to hit the Dollar Store. Whooo-hooo. For our last trip, which involved something like fifteen hours of air time to Thailand, I spent over $40 there. “How can you possibly spend $40 at a store where everything costs a dollar?” Jay asked me when I got home and showed him the cache of airplane entertainment I had procured. For a man with an Ivy League education, Jay can certainly be obtuse. Duh. “You buy forty items each costing a dollar,” was my quick response.  “That’s not what I meant,” he said.

For our Thailand trip, the Dollar Store was the last stop on my airplane shopping circuit. First, I loaded up on higher-end “educational toys” at our local toy shop. That receipt was significantly more than $40, but for the most part, Andrew was uninterested in these arty wooden objects. The Dollar Store, on the other hand, cheaply provided travel (and life) essentials, like five stretchy dinosaurs nestled in a translucent purple plastic miniature suitcase, ballpoint pens with fuzzy creatures perched atop them, fake cell phones that emitted piercing notes when you pressed the buttons, a four page book about dump trucks, and a toy aircraft carrier labeled “Peace Mission” on its side. The stretchy dinosaurs were a particular hit, although to me they looked more like poodles than extinct reptiles. But then I wasn’t the one stretching them.

Tomorrow it’s time for another D-Day–Dollar Store Extravaganza. I’m ready to hunt down the latest round of cheap, plastic crap to distract my son from the fact that he is in the process of being confined for several hours. You have to understand – Andrew doesn’t even stay still when he’ssleeping, and now he’s supposed to stay in his seat for five hours on one flight alone. I need the big guns to fly these friendly skies. I’m hoping for something along the lines of small, stretchy tigers or a tank on a “Mission of Mercy.”

Whenever I’ve broached the subject of how terrified I am of making this trip with Andrew by myself, everyone says, “Well, he’s flown all over the place before and wasn’t any problem, right?” True. I’ll admit, he’s been a champion world traveler. When he hears the call for boarding at the gate, he grabs his wheeled backpack (which he calls his “luggage”), tells us, “We’re all set to go” and marches down the jet way rolling his bag with nary a look behind him. He flirts shamelessly with the flight attendants and is mesmerized by all the machinery involved in the process of getting airborne. And if he eventually starts bothering other passengers (typically by kicking the seat in front of him or fiddling incessantly with the blinds), all we have to do is tell him, “The pilot will be very disappointed in you,” and he settles down immediately.

I know that Andrew can be a tremendous airplane traveler. But I also know exactly how much effort it takes to keep him entertained and sanguine for the duration of the flight. We read to him constantly; we work on several truck sticker books; we talk about what the pilots are doing; we play with cars; we do Play-Doh; we sing songs; we tell stories; we read more books; we go for walks up and down the aisles. If we could stand on our heads, we would, but TSA officials would probably shoot us if we tried. (Jay once had a plastic Starbucks cup confiscated as a potential weapon). When we finally land, Andrew is in a terrific mood and ready to explore our destination. Jay and I feel like our souls have been sucked from us and we must sleep pronto. The thought of doing all this without the prospect of handing Andrew off to Jay when I feel most like chucking my son out the window at 30,000 feet is what is getting to me. Let’s just say that I’m experiencing a renewed respect for single parents.

I’m not blind to the fact that I’m transferring my anxiety about my upcoming doctors’ appointments onto the logistics of travel. I’m behaving as though everything will be fine– medically and otherwise – if I can just remember to pack both of Andrew’s favorite toothbrushes, my lucky pen, and the MapQuest directions I’ve already printed. If I forget these things, though, I fear that everything (and I mean everything) will be out of control.

Even though I’m aware of my underlying loopiness, I can’t stop crafting the perfect packing list and scheming about what crappy toys will make the flying experience easier. I figure if it costs me another $40 in plastic toys to ease my anxiety, that’s worth it. After all, toys for my son are a whole lot cheaper than long-term therapy or a serious drug and alcohol habit, right?

I know, too, that once I’m on the plane, I will feel much calmer because I will be on my way. I will have a sense of fatalism that will bring relief. “There’s nothing I can do now to prepare myself,” I’ll think. And this same weird calm will hopefully carry me through doctors and tests. Then all I have to worry about is the flight home. I hope they have a Dollar Store in Philadelphia.

Permalink 1 Comment

The Barn

May 29, 2006 at 2:51 pm (Uncategorized)

Montana in the springtime can give you whiplash. Last week it was over 90 degrees; Saturday, it was snowing, with a high of around 40 degrees. By Thursday, it’s supposed to reach the upper eighties again.

Not only do fifty degree temperature swings wreak havoc on the sinuses, they also seriously mess with travel plans. We were supposed to drive the 200 miles to my parents’ ranch for the long Memorial Day weekend. Having survived several springs in Montana – and thus several canceled visits to my parents’– we should have known better than to mention the trip to Andrew. But we did, and for the past two weeks, the little guy has been telling everyone from random strangers to his babysitter, “I’m going to Grandma and Grandpa’s.”

Unfortunately, Grandma and Grandpa live ten miles up a dirt road. When it’s dry, the road is rutted and bumpy, but certainly passable in our Subaru. But when it rains or snows, the normally dusty dirt turn into a viscous substance the locals call gumbo. The stuff reminds me less of the spicy thick soup of New Orleans, and more of tremendously thick mucous – snot on steroids. Car tires get no traction in gumbo, and quickly mire in it. This is just as true for my parents’ 4-wheel drive trucks.  It doesn’t matter what kind of vehicle you drive, because when it rains on that road, nothing’s getting through. So we canceled our trip and rescheduled for June.

Andrew has been only mediocre at handling his disappointment this weekend, and is seeing a lot of his time-out chair. But I do feel bad for him. Trips to the ranch have a mythic cast for Andrew. For one thing, he has hundreds of empty acres to run around, wholly unfettered. There are also bunnies and birds to feed, and more dirt than all the world’s sand boxes combined. Grandma fulfills her job description and shamelessly spoils him. Grandpa whips him into a frenzy of silliness. Cookies are considered an acceptable lunch, and naps need never interfere with playtime. Andrew spends most of his visits in a state of perpetual dustiness and hyperactivity.

But I’m pretty sure Andrew’s favorite part of the ranch is The Barn. Unlike their neighbors, my parents don’t keep livestock, horses, or even tools and equipment in their giant barn. No, in a decision that I’m sure was designed to lure their hapless grandchildren to rural Montana, my parents filled the enormous structure with nothing but… toys. Every single race car and board game and doll that survived its initial go-round with my three siblings and me is housed in the barn, along with our old tricycles and wagons. There’s a basketball hoop and, in the winter, an indoor ice-skating rink. There’s sidewalk chalk for drawing on the concrete floor, and a little loft that is perfect for holding tea parties. Better yet, most of the toys are at least twenty years old, which means they are likely covered in lead-based paint or don’t meet modern safety standards. Extra fun for all involved!

But it’s not just that The Barn is a 40′ x 60′ x 25′ cathedral of fun with slate grey floors and aluminum siding that clangs loudly when a ball bounces off it. It’s metaphysical. Andrew insists that, when we meet my Mom in Philadelphia this week for my next academic medical experience, he’ll be able to play in The Barn, which he utters in hushed, reverential tones. The Barn is old toys, wild running around with sticks, alone time with Grandma and Grandpa, and handfuls of stale, but very sweet, popcorn. His mother, with her stuffy rules and rigid schedule, holds no sway in The Barn. The Barn is the place of eternal play. In short, it is paradise.

And that’s what we’ve deprived him of this weekend, I try to remind myself, as I struggle not to shake Andrew very hard every time he’s yelled, “NO!!!!” to most everything Jay or I have said over the last three days. I’ve also tried to take a step back and think about the conception of The Barn we each carry within us. Whether we’re Christian, Jewish, Muslim, Hindu, Buddhist, animist, atheist, or something in between, don’t we all nurture an inner sense of paradise just as surely as Andrew does? The perfect world for a two year old involves grime, access to toys, unlimited play time, and no rules. I spent my rainy weekend contemplating the parameters of my Barn, and how it has changed since I had Andrew and got a chronic illness.

The Barn, for the pre-child, pre-prednisone me, was an internal landscape of what I’ll call Big Dreams. I wanted to be a successful writer, and my definition of success was quite narrow. It meant getting into the New Yorker, Harper’s or the Atlantic. Anything short of that was mediocrity. I also wanted to be an athlete. I had begun to acknowledge that I probably wouldn’t be an Olympic champion, but it was still damn important that I be in the best shape possible. Jay and I liked riding centuries together and teaming up for different events. When he ran a marathon in Lake Tahoe, I did the 10K (running has never been my strong suit). We kayaked ninety-five miles down the coast of Palau together. But our biggest dream was to hike the entire Pacific Crest Trail (a path from Canada to Mexico that traverses some of the most spectacular land in this country) in one long trip. Having good friends was definitely part of this older model of The Barn, as was my relationship with Jay. Those of you single folks can hold your noses and gag, but I’ve never doubted the concept of true love since Jay and I met.

A lot has changed in the past two and a half years, so it shouldn’t surprise me that The Barn within me has modified itself with the developments. Health was never part of my earlier vision of paradise. Like almost everyone else who has never been sick for an extended time, I took my health for granted. Of course I would always be able to travel where and when I wanted; of course I would always have the physical stamina to lug a heavy pack on a multi-day hiking trip; of course I would always be able to stay up for four days to finish a deadline. Now I know what a gift it is to be able to do these things, and when I think of my Barn, I visualize a reality where I don’t wheeze walking up a hill or have chest pains wake me in the middle of the night.

Andrew was never in the earlier Barn. His coming into the world has launched a revolution in my own. I don’t think I’m a different person after his birth; rather I am the same person with radically different priorities and ways of seeing the world. My new Barn has Andrew in the center, and Andrew is healthy, happy, and full of love. Of course, Jay has been a constant in both Barns. He has consistently made me a better person and pushed me to become myself more fully. But in my new Barn, Jay has to hold less of the world on his shoulders than he does now, juggling finances, a child, and my ongoing health crises.

The major difference is my sense of goals. The ambitions of my dreams haven’t changed as much as they’ve shrunk. And I mean this in a positive way. Hiking the entire Pacific Crest Trail seems far less crucial than being able to hike on our local trails with my family. My definition of success in writing has evolved as well. This blog reflects that. It feels important to share my experiences with others, especially if they are struggling to make sense of how a chronic illness can meld with paying the bills, getting the kids to school, and staying sane. I also started teaching writing classes for beginners. The joy I’ve uncovered here is almost shocking. I never expected to find pleasure in hearing other writers discover their voices and gather the courage to write every day.

But before we all get too cozy in this new Barn, let me tear some of the threads of homey simplicity I’ve been spinning on my loom. If getting sarcoidosis has forced me to reduce my expectations to more appropriate, and possibly more fulfilling levels, aren’t I implicitly suggesting that illness is a moral force – that getting sick somehow made me more whole and internally healthier? This may be true in some ways (a radical mortality check can be helpful to one’s sense of perspective), but this view also deeply chafes at me. If there’s one thing I believe, it is that we, as a society, need to shed our Pilgrim skins and stop viewing illness as something other than its physical manifestations. Saying that getting sick made me a better person is only a hop, skip, and a jump from saying that God punishes people by giving them cancer or AIDS. I always come back to Susan Sontag in Illness as a Metaphor. Sickness is sickness, she said. And that’s that.

But is it really healthier to dream only of being alive for my son’s graduation or to have the strength to walk along a flat road instead of a mountain? Is it really personal progress to limit my Barn to the immediately tangible, not the castles in the air I built when I was younger? Besides, I do still want to get my work in the New Yorker, race my bike again, and hike for nearly a thousand miles. If I give up on these dreams, and tell myself that really, I only want to live another day, then I think I truly am giving up and letting this disease fill my Barn with its shriveled droppings. So, let’s just leave it that my notions of paradise have shrunk and swollen. I have scaled them back, but I conceive of this more as pruning than dying. This is a Barn I can sleep in at night.

As for Andrew, we’ve been patient with him this weekend. After all, he feels like we stole his Nirvana away. He doesn’t understand how rain and mud – the sheer physical muck of this life – can get in the way of The Barn. I hope it’s a long time before he learns this.

Permalink 1 Comment

The List

May 27, 2006 at 2:24 pm (Uncategorized)

Lately we’ve been reading a lot of Frog and Toad around here. Andrew has fallen in love with these stories, and has even chosen them as his special potty books, which means that he only gets to read them when he’s sitting on his pint-sized potty trying to poop. Enough. I have to remind myself that those without toddlers aren’t as interested in the constant talk of excrement that seems to define parenthood at this stage.

I’m glad that Andrew has chosen the adventures of Frog and Toad for constant rereading. I remember most of the stories from when I was a kid, and perusing them again only sharpens my appreciation for them, though I’m not sure what it says about my life when I catch myself deconstructing Frog and Toad.

Be that as it may, I especially like the character of Toad. For those of you unfortunate enough to have never read these books (or even worse, to have forgotten them), Frog and Toad are a sort of Mutt and Jeff of the amphibious world. Toad is plump and lazy, given to fits of brooding; Frog is tall and lean, and eternally (and infernally) cheerful.
You can see where this is going. I have accused Jay of being like Frog on those all too frequent mornings when he is sickeningly peppy. Like Toad, in “Spring,” I pull the covers over my head and say “Blah” and “Go away. I am not here.”

As of late, Toad and I share a certain lumpiness about the waist and thighs; neither of us wants to be seen in our bathing suits. Also we both are often fretful and impatient. In “The Garden,” Toad plants some seeds Frog has given him and is outraged and saddened when they don’t sprout immediately. “Grow!” he bellows to the ground, five minutes after he’s buried the seeds. Those of you who have seen our weed patch (er, yard), will agree that while Toad and I have a zeal for beautiful plants, we lack the requisite persistence to make them happen on our watch. And then there’s the matter of our common sweet tooth. In “Cookies,” Toad eggs Frog on in eating enormous quantities of his homemade cookies and thwarts Frog’s plans to instill willpower in them. In my opinion, the ability to eat just one or two cookies is a character defect.

But the story that has caught my fancy – and Andrew’s – lately is “The List.” In it, Toad draws up a list of planned activities for the day and then proceeds to stick to it compulsively. When he is out on a walk with Frog (item number four), his list blows away in the wind. Since running after a piece of paper is not included on his list, Toad is paralyzed and cannot chase after it. Frog (always so damn helpful and perky) dashes after the list, but can’t find it. Toad falls into a deep funk, unable to budge without guidance from his lost list. It is only when he remembers the last item on it – go to sleep – that he can end his day.

Like Toad, I am a compulsive list maker and feel naked without one. I have been know to construct to-do lists that span three pages and are so complicated I have to rewrite them and break them into subcategories. (Rereading these lists months later provides bizarre snapshots into the epistemology of the self. How did “get the cat’s vaccines” end up under the heading “Correspondence?”) I can’t pack for a weekend trip without compiling a comprehensive list of everything we might need, ranging from children’s Tylenol to a heart rate monitor. We have running lists of items we need from three different grocery stores stuck on the refrigerator, as well as lists of who has borrowed what books. I’m thinking of starting a list to keep track of all my lists.

Toad and I part ways when it comes to enacting our lists, though. Once I have created a list, I feel oddly liberated, almost as though the task I have detailed is completed simply in the writing of it. This is bad, because I am enough of a procrastinator without adding highly developed psychological ploys to enhance my worst trait. For instance, I don’t really want to deal with my upcoming trip to Philadelphia to determine the course of my treatment. I need to compile some medical records to bring along to my appointments. Have I done this yet? No, but I wrote it on my list, so now I can blithely avoid it. Sometimes, I don’t even read my lists after I have made them. This vexes Jay, who studiously scribbles items on our shopping lists, in the misguided belief that I will bring them along to the store. I usually go shopping with the list still neatly stuck on the refrigerator and return home with a weird assortment of items I seem to have drawn from the recesses of my subconscious. “Marshmallows,” he’ll say incredulously. “Why did you buy marshmallows? And olives? We already have three full jars.”

However, there is one list I need to work hard on, review, and actually use. This is the list of questions about my condition and treatment I’m going to bring to my appointments next week with my pulmonologist and cardiologist. I am a firm believer that a patients should never enter a doctor’s office without a detailed list of questions. There is something hypnotic about those white coats physicians wear – without a piece of paper to anchor you to your concerns, you’ll end up dumbstruck while the doctors breeze in and out of the exam room in the fifteen seconds they allot each patient and only remember everything you wanted to ask when you’re trying to find your car in the parking lot. Most doctors hate my lists. They sigh audibly when I pull one out of my pocket and start asking things. Doctors all say they like a prepared patient, one who is informed and involved in her treatment – but they are lying. What they want is a patient who follows orders and doesn’t take up much time trying to understand something or, God forbid, question some doctorly dictate.

The upcoming appointments are critical – both for my physical health and my sanity. While I was at the gym this afternoon, I was able to crystalize my nebulous anxiety about these visits. What came to me was the realization that I can’t go on like this for much longer. Not that my life is bad. I need to be clear that my goal with this blog is not to have my own personal pity party every day. It’s just that I can’t drop below 20 mg. per day of prednisone, the dose I’ve been stuck at for about a year, without my heart problems flaring up, and 20 mg. a day is too much predinsone to be taking long-term. I keep gaining weight, no matter hard I try to reverse this trend, and I am constantly sick because of prednisone’s immunosuppressive qualities. I’ve been off strong antibiotics for a sinus infection for only a week, but already I am getting sick again. My throat is sore; my temperature is rising. I practically bathe in hand sanitizer after I touch a doorknob or shake someone’s hand, and I am compulsive about trying to minimize our contact with germs. But I can’t live in a bubble. My doctors need to decide whether to try a prednisone taper one more time or begin another drug instead.

“Enough fence sitting,” I feel like yelling. “Make up your mind and get me well.” But I’ll never do that. I’m pretty polite in doctor’s offices. I will go in armed with my list, though, and like Toad, I won’t deviate from the items on it. If they try to make me, I’ll just say “Blah” and keep plodding along.

Permalink Leave a Comment

Goldilocks

May 26, 2006 at 12:47 pm (Uncategorized)

Yesterday Andrew got his first haircut.

“What?” I can imagine you asking, since I’ve already heard similar shocked responses about Andrew’s hair about 500 times in the past year. “You waited until your son was almost two and a half before cutting his hair?”

Yes. We did. And yes, he got mistaken for a girl every time we left the house. His tousled mop of curls was also a nightmare to shampoo and comb. What propelled us to sit Andrew in the barber chair yesterday was the realization that if his hair was to stay long, we’d need to deep condition it. It’s a good day when I get to wash my hair, much less take a shower. Let’s just say that I wasn’t about to start leaving Pantene conditioner in my toddler’s hair while he shrieked and flailed in the tub.

I had been agitating for his haircut for over a year. I was tired of people telling me how cute my little girl was. I was surprised by my discomfort. I have never approved of the gender-ification of babies and toddlers. Little ones are little ones, I always said, and I hate the sharp divide in toy stores and society at large. Everything pink and fluffy is for girls; everything blue and treaded is for boys. Andrew has always been wonderfully eclectic in his interests. His favorite things in life are motorized–cars, trucks, airplanes, and construction equipment. He can recognize and name the “rapid intervention vehicle” and the “articulated rescue vehicle” in his picture books. He knew what a Concorde was before he could crawl. Yet at the same time, he loves ballet, my old dolls, and the toy kitchen from his Grandpas Steve and Don. His favorite color today is hot pink, but last week it was royal blue. I like this about him; it speaks to a promising future as a nonconformist. Nevertheless, I was still concerned about him being confused about being called a girl all the time. I couldn’t explain the anxiety that circulated around in me, but it was there. Andrew, of course, didn’t seem bothered by it at all; in fact, I doubt he ever noticed.

Jay loved Andrew’s hair long. When I pressed him on the topic, he just said, “I like it long.” I tried to correlate his resistance at cutting his son’s hair with his desire to hold on to Andrew’s babyhood. “Are you having a hard time letting go of this part of his life?” I asked. “No, I just like it long,” he replied. One of the most annoying and wonderful things about my husband is his capacity not to dwell at deeper levels. By deeper I don’t necessarily mean more significant, but instead of the darker, subterranean realm. He takes people at face value and doesn’t ever seem to brood about the possibility that contradictions lurk within him and others. I, on the other hand, am always looking for the hidden, unpleasant meaning behind every seemingly innocuous reality. He can be relentlessly cheerful; I can be willfully pessimistic. Somehow, after nearly nine years of marriage, we haven’t killed each other but have instead achieved a weird balance.

There was a lot to love about Andrew’s long hair. It was a sumptuous, silky blond, completely unlike Jay’s dark brown hair or my red. Andrew’s hair was also curly, and with the proper amount of humidity in the air, it formed perfect ringlets. He looked like Shirley Temple. When we went recently to Thailand, which has an average humidity of around 2000 percent, Andrew was the spitting image of a cherub, with his halo of curls framing his face and spilling down his back. People treated him like a small god. Strangers on the street wanted to caress those golden, bouncy curls. Back in dry Montana, he just looked like a rock star. But, he was getting split ends, and his tresses were ratty, not heavenly, on most days. We made the appointment with Jay’s barber.

We were worried that Andrew would panic in the chair or melt down once his long locks were shorn. We should have known better. In any sphere that Andrew is the center of attention, he does just fine. He spent the entire haircut chatting with the barber, craning his neck to examine his new look in the mirror, and mugging at himself. Jay collected every strand that fell on the floor and put them in a zip-lock bag. He even did a credible job of looking cheerful for Andrew, although I could see the sadness in my husband’s eyes. When the haircut was finished, Andrew hopped down and proclaimed, “I like my new short hair.” He didn’t bring up the subject again for the rest of the evening, except to tell his granndparents on the phone. You could just hear the five of them thinking, “Thank God.”
When we got home, it was time for me to start dinner. I felt inexplicably off, as if the kitchen floor had tilted a degree or the lights were subtly flickering. But I had spaghetti and meatballs to make, so I shrugged it off. On my way downstairs to fetch a clean kitchen towel out of the dryer, I caught sight of Andrew’s long, beautiful curls stuffed in their unceremonious baggie. My off-kilter internal lurch escalated with each step down, and by the time I reached the dryer, I was sobbing and was having difficulty breathing. Luckily Andrew was upstairs, playing with one of his eight million matchbox cars. “This is utterly ridiculous,” I thought to myself, as I forced air into my lungs. “I was the one who wanted his hair cut in the first place.” So much for me being aware of my subterranean emotions; I guess Jay’s surface dwelling is contagious.

It took me a while to sort out what was swirling around in my head. Jay wasn’t the one who was afraid of Andrew’s babyhood ending. I was. With his short hair, Andrew looked like a little boy, not the fish-like creature who emerged from me on New Year’s Eve over two years ago. What I felt in the laundry room was the sickening, irrevocable passing of time. I could never get back the little cherub who scampered on the sandy beach in Thailand, or the infant who called garbage trucks “mims,” or the tiny baby who nursed while nestled in my hair. The march forward is relentless, and I wanted to pause the treadmill for a few minutes–or years–and come to terms with where I am and where Andrew is.

One crummy thing about my illness is that it came into my life at almost exactly the same time as Andrew. I’ve often thought that it is unfair that I have had to grapple with my own mortality precisely when I began nurturing a new life. It just seems as though the forces of birth and death should have their own spheres, at least for a couple of years. I have always resented worrying about my health and my future while I watch Andrew become a little more of himself every day. But this wish is an absurd one, and I know it. Life and death are not zoo animals you can keep in separate cages, letting one out when the other is safely asleep. They are woven into each other like strands of braided bread. You can’t get a taste of one, ever, without some of the other. Understanding this doesn’t mean I have to like it.

Who knows if my visceral realization that every milestone and step forward for Andrew is one step closer to my end–and eventually his–was informed by my illness and its effects on me. Maybe every mother feels the surge of these horrible, cosmic forces with every child she raises. Maybe every mother feels time slipping through her fingers like liquid. Maybe every mother mourns each passing moment because it is irretrievable–and indescribably important. I can’t speak for every mother, but this is the kind of mother I am. I can’t be any other way.

It might be easier if Jay and I were sure we could have another child. Perhaps with this knowledge, each of Andrew’s growth spurts and achievements would seem less final. We could look forward to some day experiencing all this again with another baby. Unfortunately, I’ve been told not to have another child–at least not yet. No one really understands what’s going on with my heart, and since I’m on toxic medication and pregnancy is hard on a healthy heart, much less a damaged one, we’ve been told to wait. We remind ourselves that my doctors have not said that I’ll never be able to have another child. But still, I’m almost 35. Time is not unlimited.

I think I did a good job of cheering myself up for dinner. It’s not that I wanted to be false with my son, but I certainly did not want to chance poisoning an early memory. He shouldn’t recall his mother having a nervous breakdown about his first haircut. Just imagine all the psychological issues that would create. Also, I was beginning to feel genuinely better. Andrew looks wonderful with his new short hair, and he is so proud to be growing up and becoming more independent. “Mommy, I am a big boy,” he likes to tell me. I would never want to undermine this or dampen his drive to reach his next step. To do so would be cruel. But that doesn’t mean that sometimes, down in the damp cool of the laundry room, I can’t ever cry at what I lose–and we all lose–with every passing day.

Permalink Leave a Comment

Herding Cats

May 25, 2006 at 11:08 am (Uncategorized)

There are mornings like this one when my cat seems strangely symbolic of my life. Granted, the connection might be tenuous because it emerged from a sleep-deprived mind. I didn’t get a whole lot of rest last night because our two year old son Andrew materialized in our bed at an ungodly hour and then proceeded to colonize the mattress by stretching out perpendicular to Jay and me. How can someone that small occupy so much space – and, more importantly, why did we ever teach him to walk? I would be much better rested if we had convinced him that his legs were vestigial rather than functional. Then he would be trapped in his bed unable to roam the halls at the wee hours looking for a cozier spot to thrash around in. But I digress.

Those of you who have visited me know about Kate the Cat. Those of you who haven’t, should never come stay at Casa Rebecca and Jay. We are actually slaves serving Kate, and you will be too if you set foot in here. What Kate lacks in poundage she makes up for in attitude. She’s da bomb – albeit more of an IED than a warhead. She’s only five pounds, but three of those pounds are her vocal cords and the other two in her hind legs (her head is pretty much empty). Kate isn’t afraid to ask to have her needs met, nor is she shy about changing her mind. After being inside the house for 2.5 seconds, she parks her skinny ass next to the door and starts meowing to go outside again. Once you let her out, you have another 3.8 seconds of quiet before she kicks up a racket on the other side of the door. This can go on for hours – days, really – and it doesn’t matter how late it is or what you are doing. For instance, Kate likes to sleep inside the house tucked into her orthopedic cat bed with faux sheepskin, but 4 AM is prime hunting time and she needs to get outside to terrorize the local bird population. We’ve stopped fighting it. Once she meows a single time, we virtually sleepwalk to the front door and let her out in the pre-dawn.

If you decide to assert your rights as a homo sapien and not put your opposable thumbs to use opening and closing doors, Kate will show you who really is the higher life form. She’ll alter the pitch of her howls with the skill of Renee Fleming. Her notes rise ever higher and become ever more frantic. If this fails to make you open the door, she starts climbing the walls. Literally. She can jump to the top of the refrigerator in one leap, and then crawl into the ceiling. Because we live near a busy road, my best buddy Amy was always slightly horrified that we let Kate outside. Whenever I complained about Kate wandering off for a day, which meant I would stay up the whole night calling for her and worrying she was dead, Amy would suggest that we just keep Kate inside. Then Amy came and stayed with us in Montana for a couple of months. “Jesus, throw that fucking cat outside,” she snapped one day when Kate practiced her kitty octaves and climbed the screens. I felt vindicated.

Disciplining Kate is a lot like, well, herding cats. If you catch her on the counter and yell at her, she looks at you with her yellow eyes and shrugs. I swear, she shrugs. If you swat her, she cocks her head. Sometimes she’ll deign to jump down, but she does it so languorously that it’s clear she’s just humoring you and your pathetic attempts to reign her in.

I’ve decided that Kate’s bad behavior has nothing to do with shoddy parenting – or cat-enting, if you prefer. Like many politicians of both parties, who spout about border fences and whatnot, I’ve opted to believe that Kate’s problems are because she’s foreign. (For maximum effect, pronounce this as “furrhn.”) You see, we actually brought Kate home with us from the other side of the world. That’s how dumb we are. We rescued her from the jungle in Palau, the Pacific-island nation where we lived for sixteen months before I was pregnant with Andrew, and paid hundreds of dollars to fly her back to the US. But she just isn’t integrating. She keeps her furrhn ways. One glance at her will tell you she’s not American. She’s rat-sized and has these enormous ears that she can rotate to track our whereabouts in the house. Also, since she hearkens from tropical climes, she doesn’t grow a whole lot of fur. Winters in Montana are tough on her.

I’ve digressed for an exceptionally long time. Bear with me. This is going somewhere. I promise.

Andrew adores Kate, and he also shares her penchant for late-night perambulations. Unfortunately, I can’t blame Andrew’s behavior on his origins. There’s no crack-addicted mother in his past that we can claim as the cause of his constant motion. No, Andrew emerged from me and has been in our care thereafter. Whatever qualities he has in common with Kate, he got from us, whether it is colonizing the bed, climbing on counters, or screeching in the middle of the night.

Then there’s the matter of disciplining him, which again is oddly reminiscent of our sad, sad attempts to control Kate. Jay and I have studiously followed the advice of the parenting books. We strive to enforce unwavering limits; we attempt to reward good behavior as much as we punish the bad. When he is engaged in a forbidden activity, we try not to yell right off the bat, but instead say calmly, “Andrew if you don’t stop sticking that fork in the electrical outlet (or pulling the cat’s tail or squealing like an infant pig or sticking a spoon down your throat) by the count of three, you will have to go to time out. 1, 2…”

The problem is that Andrew, well, is a little on the stubborn side. I’m convinced it is out of sheer spite that he claims to like going to the time-out chair. He even brought the chair upstairs into his room one evening. His favorite word is “no,” closely followed by, “I don’t want to.” And if you have the audacity to tell him no, in response to a request to read Bread and Jam for Frances or Monster Trucks for the fiftieth time that day, he will follow you around the house, doing his own operatic performance. His recalcitrance is downright impressive. One time he peed in his pants but didn’t want to stop playing with his clay. “Come on, Andrew,” I said. “Let’s go change your underwear because I know that doesn’t feel good.” Without missing a beat he said, “Mommy, I promise you. It feels good,” and proceeded to sit in his urine for quite some time.

One afternoon I was trying to change his clothes while he was lying in his bed. He kept squirming and kicking me in the face when I bent over him. I went through my usual litany of counting and warning–all in a steady, calm voice. He kept kicking. I could feel my anger rising from my stomach to my throat. “Andrew. Stop that right now,” I screamed, loudly and not calmly. He kicked me again. Something in me snapped and for the first time ever, I hit him–a solid smack right on his butt. I’ve heard that when other parents do this, their child immediately starts sobbing and behaving. Not Andrew. He laughed. When I told a friend this, she said, “Maybe you didn’t hit him hard enough.” Maybe I won’t drop Andrew off for babysitting over at her house anytime soon.

Those of you who know Andrew will immediately leap to his defense – because he actually is an amazingly good and sweet-tempered kid who tries exceptionally hard to please us. I’m just presenting an extreme view of one piece of his temperament. Because that’s the way it feels sometimes. There are mornings like this one when I can only see the bad in my son, my husband, my cat, my life. My house is a mess; the laundry piles have taken control of the bedroom and are threatening to overrun the rest of the house; my thighs are likely to join in this insurgency and expand even more; I have writing projects backing up; my mother’s day cards to our two Moms are still waiting to be mailed; I have a list of people to have over for dinner that is growing with what seems like a mutant force; I’m convinced I will never get well, will never feel rested, will never get off my medication, will never be able to function without a pot of coffee in my veins. I see life with chronic tiredness and a dirty house stretching into infinity. And it depresses me.

It is at moments like these that I must remind myself of Kate the Cat. She is perhaps the most obnoxious feline that has ever walked the earth, but she is also cute and kind. Andrew has nearly yanked her tail out of its socket and she’s never come close to scratching him. The highlight of her life is snuggling in bed with him. True, there is a lot of herding her (or, more precisely, being herded by her), but we make it work. Same goes with Andrew. A little herding every day, and I’m convinced he’ll decide it’s better to sleep in his own bed, to poop in the toilet and not on the floor, and that squealing is not an acceptable form of communication.

As to the messiness that is my life, I’ll just keep nudging its component parts around like stubborn cats as well. I know you can’t herd cats, but you sure can try. I won’t get well today, but I can take a nap. One load of laundry won’t kill me, nor will researching an article. Like Kate, the individual pieces of my existence sometimes leave something to be desired (all that damn prednisone and those doctors’ visits), but also like Kate, I love my oddball days. If only they were a little quieter.

Permalink Leave a Comment

You Don’t Look Sick

May 24, 2006 at 1:44 pm (Uncategorized)

As anyone who has ever suffered from a chronic illness knows all too well, there’s only one thing that comes close to being as annoying and draining as the disease itself: idiots responding to your disease. Perhaps idiot is too strong a word, because, really, these people aren’t stupid – they’re just insensitive, clueless, and afraid. But I like using idiot; it has solidity and verve to it.

I’ve only had sarcoidosis for two years. When I hear about folks who have suffered with this illness for fifteen or more years, I wonder how they have managed to interact with the world without losing their minds or resorting to assault rifles.

Before I continue this rant, let me be explicit that I have many wonderful people in my life who are not idiots about my illness. Every single member of my family is incredibly compassionate and nonjudgmental. I have friends who want to understand how my life has changed and how they can help make things easier, and I was lucky enough to get diagnosed with sarcoidosis right away. I know several people with chronic illnesses who had to endure insufferable doctors insinuating they were hypochondriacs or malingerers before finally getting the diagnosis and treatment they required. Although I complain about certain doctors in my life, I have been exceptionally fortunate in finding (and being able to more or less afford) specialists who know as much as there is to know about sarcoidosis – which is not a whole lot.

I am also aware that when people are idiots about illness, they are not responding from the compassionate part of their brains. Hearing about or seeing someone who is sick – and worse dying – activates some reptilian piece of our consciousness that is consumed with self-preservation and fear. I know that insensitive comments are really about the idiots’ fear of death and illness, not about me. I’m sure we have a primal survival mechanism that propels us away from sickness, even when we rationally comprehend that sarcoidosis or cancer is not contagious. But we also have the capacity to move beyond our lizard brains and act like humans. We can overcome the fear – but sometimes we seem to choose not to. There’s where my thoughts of assault rifles enter the picture.

But I suppose that might be a little drastic. So, in case you are an idiot who has happened onto my blog, or if you are unfortunate enough to have a chronic illness and also have idiots in your life, I have prepared an easy-to-follow guide of how not to respond to someone who is chronically ill.

1.) Never, ever tell a chronically ill person, “You don’t look sick.” Saying this is totally invalidating and minimizes the illness. I have a friend with cancer who has been undergoing various chemotherapy combinations for over a year. I met her for lunch recently, and if I had just glanced at her, I would have thought she looked fine because she was dressed nicely and was wearing a wig. The reality, though, is that she has lost a significant amount of weight and all of her hair. Her mouth is full of sores that are so painful she can’t eat solid foods. She is constantly sick with secondary infections; any spare time she has, she devotes to napping.

Now, let’s pretend that you’re an idiot who says to my friend, “You don’t look sick.” Whether or not you intended to, you are implying that she’s not really ill. This puts my friend in the odd position of either defending her health status and insisting she’s sick (and then feeling really weird about it) or walking away choked with rage. If you’re trying to pay a compliment and want to help someone focus on positive things, skip semi-accusing them with, “Well, you don’t look sick,” and try instead “You look amazingly well considering all the health problems you’re having.” See how easy that is?

2.) Never, ever say to a chronically ill person, “You’re still sick?” This oft-repeated phrase also carries the not-so-subtle message that the ill person should be better. No one who spends as much time at doctors as the chronically ill wants to take any of your crap on this. We already devote enough time flogging ourselves for not being well. Being chronically ill means you don’t get better quickly – or at all. People with lupus, MS, or sarcoidosis are sick for years and there is often little in the way of treatment, so don’t act shocked – and even outraged – that someone has the audacity to remain ill for more than a few days. I know that the thought of being ill for a long time is terrifying (welcome to the land of the chronically ill), but you’d better get used to it. Given all the chemicals and crap we’ve pumped into ourselves and our environment, there’s a good chance that you, too, will develop a chronic illness and can enjoy the comments of former idiots like yourself.

3.) Do not make treatment suggestions to a chronically ill person. I don’t care who you know who got better taking fish oil, distilling frog urine, or by subsisting on apple peels. I don’t give a hoot about who mysteriously recovered from a dire disease – even if it was you – with acupuncture. Unless you are a doctor well-versed in the disease of the person you’re talking to, don’t assume you can offer some quick-fix therapy. It doesn’t make us feel better. We worry about how to get well all the time, so we don’t want or need our friends (idiots though they may be) to pile in. Moreover, the subtext of this treatment “advice” (as with the two above) is that we sick people can fix ourselves, if only we worked hard enough at finding the right cure. Nope. We are not puzzles missing a key piece.

But if, despite the foregoing, you’re still absolutely, positively sure that you have useful information to impart, get permission first. At the very least, ask if your chronically ill friend or acquaintance wants to hear what you have to say. Try prefacing your miraculous cure with, “I know you must get a lot of health advice from people; I have some ideas about things that have worked for me/my mother/my pet pigeon. Would you like to hear them?”

I don’t know why it is that people who are interested in alternative/naturopathic medicine  (I’m going to call them “homeos”) are so much more tenacious than their antibiotic-taking counterparts. I’m sure there are many healing qualities to various supplements, minerals, and herbs. This does not mean that I want to hear about them.  Nor does it mean that 10,000 miligrams of goldenseal brewed into a tea will restore me to perfect health. I think the ferocity with which homeos disseminate this information stems from their belief that Western medicine suppresses any dissenting opinions or models (which it probably does). I sympathize with your desire to share your insights. Really, I do.  Being sick has taught me that people’s notions of health and medicine are frequently more akin to religion than science. But I don’t like proselytizing, whether it comes from homeos or Jehovah’s witnesses. Stay away from my front door! If it’s any consolation, I don’t want acolytes from the world of pharmaceuticals or surgery showing up either.

Worse yet are people who want to proclaim the power of positive thinking and healthy lifestyles. Please don’t assume that someone with cancer or an autoimmune disease is overweight because they are lazy or misinformed. We really don’t need you to tell us that we would feel better if we lost weight. (It reminds me of when I was a smoker and perfect strangers would stop me on the street to tell me that smoking is unhealthy. Gee, you think?) Quite often, though, the chronically ill gain weight because we take medications that bloat us and increase our appetites or because we feel too damn sick to make it to the gym or go for a hike. It’s not always a question of will power. This week, for instance, I worked out five days and followed my weight watchers plan. The result? I stepped on the scale this morning to discover that I’d gained two pounds. I really don’t need an idiot lecture on a day like today.

If you really want to address someone’s weight, diet, or exercise habits, do it in a way that is kind and loving. Put another way, be a friend, not an idiot like, say, the woman I encountered in the grocery store who managed to violate two of my idiot rules at once. “Wow, Rebecca,” she said. “You don’t look sick, but you do look like you’ve gained some weight.” Ouch. My mother did the most amazing job with this a few months ago when I was wearing pants that were too tight for my prednisone-enhanced butt. “You are so beautiful,” she said. “It doesn’t matter how much weight you have gained, you are still beautiful. You have beautiful skin, hair, and eyes. Let’s find you some clothes that enhance that.”

And people that lecture me on positive thinking will be shot. It’s just the most humane alternative. I know that there are people who believe that illness is caused by bad attitude, that somehow our bodies express the sickness festering in our minds. I once listened to a Louise Hay tape, where she soothingly intoned that all I needed to become healthy was to imagine myself healthy. Well-intentioned friends have given me books on point. Nothing makes me angrier than this worldview. If you subscribe to it, keep it to yourself.

In calmer moments, I know that this uncompassionate attitude comes from the reptile brain as well. We are afraid of sickness, so we imagine illness as something within our control. The warped thinking goes like this: “Suzie is dying of lymphoma because she swallowed her anger for years and years; I, on the other hand am psychologically healthy, so I won’t get cancer and I won’t die.” Not only are you being an idiot, you are setting yourself up for a big shock. Guess what? Everybody dies. You too. Blaming the victim, with a mindset every bit as Puritanical as the Plymouth colonists – even if you’ve dressed it up with New Age triteness – isn’t going to keep you well. It will just keep you an idiot.

If you are genuinely concerned about your chronically ill friend’s attitude, don’t inflict pop psychology, judgmental books, or corny tapes. Instead, try acting in ways that might actually improve your friend’s outlook. Chronically ill people feel lousy a lot of the time. It’s depressing and lonely. So rather than pontificating about positive thinking, bring dinner one night. Or take your friend to a mindless movie, babysit her kids, clean her toilet, treat her to a manicure. These generous acts of compassion and care will make someone feel instantly better about themselves, their illness, and the world they inhabit.

4.) Do not ask overly detailed questions about a chronically ill person’s condition and treatment unless you know them well. There is nothing more tiring than having to spend twenty minutes detailing my symptoms and my prognosis to a virtual stranger I’ve stumbled into conversation with at the gym. There is a line between concern and voyeurism. You know where it is, so don’t cross it. I’ve come to realize that the people who want the nitty gritties about my sickness are, once again, acting out of fear. You can see the busy wheels of their minds clicking off symptoms to see if they correspond to any of their own. I know someone with a deadly form of brain cancer; he told me that people perpetually ask him how his disease started. They are more concerned with their own health than his. It’s a natural urge to double check that you don’t have MS or inoperable tumors, but it is tremendously invalidating and selfish.

The bottom line is that chronic illness is a terrible burden – for those who suffer from it and for those who are part of the sick person’s world. It’s hard to be sick, and it’s hard to watch someone you know, like, or love struggle. People act like idiots when they ignore the core of fear at the center of the human condition. We all sicken and die. It’s not fun to contemplate. But rather than avoid this universal bit of pain and blame a sick person in countless flippant ways, admit to your unsteadiness in the face of it all. I wouldn’t think you were an idiot if you told me, “You’re sick and I don’t really know how to respond to you. Can you help me deal with this in a way that is OK for you.”

Permalink 4 Comments

Would You Like a Drink With That?

May 23, 2006 at 12:15 pm (Uncategorized)

It’s Tuesday and I’m 2 for 2. Sometimes I get a kick out of tracking my various medical appointments and keeping score. I’ve had a couple grand slam weeks, which means I’ve spent every day of the business week at a different medical appointment. But this week looks pretty average–two days, two appointments.

Today was a bone density scan. Long-term prednisone can cause osteoporosis even in younger women like me. My doctor started me on Fosamax, but wanted to obtain baseline data for future comparisons. The scan was easy, painless, and fast. It only took about ten minutes and didn’t require IVs, electrodes, or radioactive substances in my circulatory system. And they call this a test.

I won’t get the results for a few days, but I’m looking forward to reaping the rewards of this test right away. You see, Jay and I have a weekly ritual we’ve dubbed our House drinking game. If you don’t watch House, M.D., you should, not because it’s particularly good or even realistic, but because it will make you realize how shoddy your own medical care is. Every week, one of the misanthropic Dr. House’s team is dispatched to search a patient’s house for clues into the causes of a patient’s mysterious–and always imminently life-threatening– illness. I’ve been to top notch medical facilities across the country, and I’ve never caught one of my physicians snooping in my kitchen cabinets to unearth the roots of my sarcoidosis. It’s a good day when my doctors return a phone call.

Like other medical shows, House uses plenty of medical jargon to give the program a patina of realism. As the doctors toss around ideas to make a differential diagnosis, they name esoteric diseases and order hundreds of thousands of dollars of tests, none of which is ever questioned by a tightwad HMO. Jay and I began to notice–and then to take a sort of perverse pleasure in–that I had undergone an awful lot of the tests House and his team use. We also realized that a few of the bizarre diseases and their associated conditions are ones related to what I have. There was even an episode that dealt with sarcoidosis, even though the afflicted kid ended up not having it.

After a few days of perusing my blog, you’ve probably figured out that Jay and I don’t get out nearly enough. Perhaps this is why we began our game. Think of it as a medical variant of that old college standby, quarters. If House orders a test I’ve had, we drink once. Sometimes we assign an extra sip for a more rigorous test. For instance, at least one person per episode is given a lumbar puncture (spinal tap). In my book, “an LP,” as they in the know call it on TV, is worth at least two sips of beer. An MRI administered on the show means we drink once, but if they specify a cardiac MRI, which is far more uncommon and specific to me, we drink twice. I’ll be watching this week to see if Dr. House orders a bone density scan for a patient. If a condition I’ve been suspected of having but ultimately did not, like a pulmonary embolism, pops up on the program, it’s one sip time. A condition I actually have earns two sips. The diagnosis of some type of autoimmune disease requires one sip; the dispensing of prednisone to a patient for said autoimmune condition immediately makes for another sip. And if they even mention sarcoidosis, it’s a three sip minimum. As you can see, the rules are open to a fair amount of interpretation, depending on the desired sobriety level. Play the game with your own medical condition and see where you end up.

Unfortunately, the delightful cocktail of drugs I swallow every morning rules out over-consumption of the real thing. My limit is one beer a day, so Jay and I are forced to resort to a symbolic version of the drinking game. It’s still fun, but it lacks the urgency of the real deal.

Permalink Leave a Comment

Fear Factor

May 22, 2006 at 4:16 pm (Uncategorized)

At 4:15 this morning, my two year old son Andrew walked into our bedroom and announced, “I’m scared of the swans on my pillow.” Actually, what he said was, “I thcared of thwans on my pillow,” but Jay and I have special toddler-ese decoders implanted in our ears so we were able to understand him, even in our sleep-deprived state. Jay tried to take Andrew back to his bed, but it was futile. “I thcared,” he kept wailing. Here’s the kicker – there are no swans on Andrew’s pillowcase. In fact, there’s nothing animate represented there at all, just green stripes on a white background. Also, I’m not sure if Andrew has ever seen a swan or read a book that includes one – thcary or otherwise – among its characters.

But this seems to be part of a trend. Andrew has begun to express fears with some regularity, and I find most of them bewildering. When he goes into the bathroom, we have to open the curtain so that “no wolves can come in.” At least wolves are more menacing than swans, but how does opening something keep them out? We also have to skip certain pages of certain books that scare him, though, again, I’m perplexed by my son’s logic. For instance, we need to avoid reading about an innkeeper who makes a bear cub wash dishes, yet Andrew delights in Mr. Bird crying over what appears to be Mrs. Bird’s cat-chewed remains in P. D. Eastman’s classic, The Best Nest.

I shouldn’t be surprised, I suppose, because fears are certainly idiosyncratic. Apparently some large percentage of voters in this country finds something reassuring about Dick Cheney, yet whenever I inadvertently catch a glimpse of his curling lip on CNN, my skin crawls and I can’t help but hear in my head the nasal computer voice from WarGames (that cheesy Matthew Broderick movie from the eighties) intoning “let’s play global thermonuclear warfare” over and over. I’m pretty sure that Jay’s worst nightmare involves me taking control of the iPod, as well as capturing the remotes for the television, cable, TiVo, and DVD players. As the Romans (and Jay’s dad) have been known to say, De gustibus non est disputandum – there’s no accounting for taste.

Lately my fear-fighting strategy has involved more stuffing than your average Thanksgiving. I’ve seen far too many physicians lately – many of them highly renowned specialists – who have used words like “cardiac event,” “unknown prognosis,” and my personal favorite “drop dead” with me. I have what I consider to be the rational human fear of death – amped up on several shots of espresso.

The awful part of it all is that I feel like now I have the most to lose. I am married to a man I love more than anything, except perhaps for our son. We live in a town we like; I enjoy my work; we have wonderful friends and families. But mostly, I am now a mother, and that has changed everything. I cannot stand the thought of missing Andrew’s life. It’s not that I think I am an extraordinary parent and that he would collapse without me. Hell, if I disappeared right now, he probably wouldn’t even have concrete memories of me. No, my fear is fundamentally selfish. I want to see him grow up. I want to watch him unfold into the person I see becoming.

Beyond the metaphysics of it all, I’m settling into the long, dreary haul that is a chronic illness. Now that the drama and tension surrounding my diagnosis and initial treatment have faded, the knowledge that the rest of my life will involve constant monitoring, at best, and likely frequent medicine changes and ongoing health problems has sunk in. The allure of the cardiac MRI, the main diagnostic tool for cardiac sarcoidosis, has worn off. Having these claustrophobia-fests four times a year is not how I want to mark the seasons.

In a couple of weeks, I leave to see my doctors on the East Coast. I’m nervous about the outcome of these visits, no matter which way it goes. Either they’ll switch me to methotrexate, a chemotherapy agent with long-term health risks, or they’ll keep on prednisone, a steroid with long-term health risks. No wonder I feel like I don’t have many options. Having a rare disease mostly seems to entail having vague doctors’ appointments, where the most common answer to my questions is, “We don’t know,” and the most common strategy is to keep my high dose of prednisone exactly where it is and re-check me in three months.

Integrating this morass of sadness, fear, and frustration into my daily life is a challenge I haven’t yet mastered. Of course, I can’t talk about it with Andrew; he’s far too young to share this. I want to be present for him and with him. While it may be emotionally gratifying in the short-term, I also won’t countenance sobbing in my room about what might or might not be. I want to take him to the pool, teach him piano, read him books, and play with his trucks with him. Like I said, I’m selfish. These things are important to me.

This is where the stuffing enters. It is possible to push fears down. It’s called denial, and although I’m sure every therapist in the country will tell you that repressing your emotions is a bad thing, I’m actually a big believer in denial – which seems to me like a highly evolved psychological survival mechanism. I am enough of a control freak to believe there is a proper context – a time and a place – for melting down. Right now just happens to not be one of them.

One of Andrew’s favorite books is Bedtime for Frances, in which a lovable badger has to confront all of her night time fears and fall asleep on her own. First, she thinks she sees a tiger in the corner, then a giant in the chair, and spiders crawling out of a crack in her ceiling. When she complains to her father that the “something” is moving the curtains, he tells her it is the wind and that it is the wind’s job to blow the curtains. “Everyone has a job,” he tells Francis, and says he will spank her if she doesn’t go off to bed. She ultimately manages her fear by reminding herself that it is the moth’s job to bump against the window and startle her. “It is my job to go to sleep,” she thinks before she drifts off. I’m not sure exactly why Andrew loves this book, but he does. I find it somehow redolent with the worst strains of Calvinism: we’ve all got jobs, even the creepy crawlies, and your job is to sleep. If you don’t go to sleep, I will spank you.

As I lay awake this morning after Andrew had fled the army of swans for our bed, poor little Francis came to mind. Why doesn’t Father Badger take her by the hand and watch with her as the curtains billow with the wind? “See, Francis,” he would say, “It’s just the wind. It’s OK to be afraid, but this is just the wind.”

It occurred to me sometime around 5:00 this morning that perhaps I should explore the relevance of this kid’s book. After all, it was keeping me awake, although my eyes felt itchy with fatigue. Maybe, like Father Badger, I’ve been squelching anxiety by threatening myself with a flogging. As the birds roused themselves and began to sing outside my room and the light hardened as it came through the curtains, I began to wonder about the merits of strength – the trait I typically most admire in myself and others – in handling fear. Can we do our jobs and just go to sleep when we are afraid? Is it possible to power through fear?

A friend sent me a passage from a Quaker hymn:
Blessed are the vulnerable
for they shall be broken
and in being so
shall break open
the heart of the universe.

I’ve been turning these lines around in my mind. They come unbidden, as they did today on the cusp of day, as I resolutely tried not to think about the world without me in it. Perhaps the way through the fear is to become open to the breakage. For a flash, I felt a peace that came through vulnerability. For that moment, I felt that it is time to take a look at what’s rustling the curtains and see that it’s simply the wind bringing with it the dawn. Or who knows? Maybe it’s the swans.

Permalink Leave a Comment

Run, Daddy, Run

May 20, 2006 at 2:03 pm (Uncategorized)

There are days when I wish my son, Andrew, was more pliant. When I was pregnant with him, I had visions of our lives after he was born. I pictured myself typing away on my Pulitzer Prize-winning novel while Andrew happily lay in a wicker cradle at my feet, snoozing and chirping to himself.

I’ve heard that babies and toddlers like this exist. In fact, I’ve even seen some of these exotic creatures in their natural habitats. A while back, we went to dinner with people who had a three month-old son. This kid just sat in his bouncy chair while we ate, and then he sat some more. When Andrew was three months old, Jay and I resorted to wolfing our food down in shifts because Andrew treated his bouncy chair like it was a medieval torture rack. Same for his swing, his playpen, his crib, and pretty much anything else that confined him and allowed Jay or I to pay attention to something else.

One of the biggest mistakes we’ve made as parents so far is encouraging his mobility and verbal skills. Now he moves constantly while telling us exactly what we are doing wrong. For all you novice mothers and fathers, appreciate your child’s slug phase. It will pass, and someday you, too, will be cooking dinner and hear your little angel say, “Look, Mommy” (which Andrew only utters when he is engaged in something naughty), and you will turn around and see your child standing in the middle of the dining room table holding a fragile vase in one chubby fist.

The other major error we’ve committed is encouraging Andrew to do the things we love to do with us. In our pre-Andrew era – those halcyon days when getting up at 9:00 meant rising early – Jay and I spent a lot of time talking about what fabulous parents we would be. We would not have separate spheres for ourselves and our Hypothetical. If we went skiing, the Hypothetical would come along. If we hit the hiking trails, so would the Hypothetical. Same for traveling, cleaning the house, and all sorts of other things.

We’ve pretty much followed this plan for the past two years. We just got back from a family trip to Thailand. Andrew was an impressive traveler. He loved the seventeen hours of airplane time (perhaps because I gave him a new trinket every five minutes), navigated the streets of Bangkok like a pro, made friends wherever we went, and didn’t get sick once. My fondest memory of the trip is of Andrew sitting in the lap of a saffron-robed Buddhist monk at a remote, mountain monastery while the monk tied a prayer bracelet around Andrew’s wrist and cooed at him in Thai. Our son is also well-mannered at restaurants, thinks it is great fun to help me do yard work, is a good hiking companion, comes to get beer with us at the local tap room (as long as we let him stuff himself with popcorn), and likes nothing more than to sit on the counter and “help” me chop vegetables for dinner.

There are situations, though, where a two year old just gets in the way. Take the gym. It is simply not possible to watch a child and work out simultaneously. For Andrew’s entire life, Jay and I have been going to the gym separately, even though our health club provides free childcare. I have dropped him off at the gym daycare a few times in the past, but he picked up a virulent illness nearly every time. Since the prednisone I take leaves me with a severely compromised immune system, I too would get sick – and then sicker – within a couple of days. Since one joint workout could cost me a week of misery in bed, it was easier to juggle Andrew and go at different times.

But in Thailand, Jay and I realized how much we missed exercising together. Ever since the beginning of our relationship, we’ve hiked and skied, biked and stairmastered, taken spinning classes and kayaked, side by side. (I used to be able to kick his ass up and down the hills, by the way, but I’m trying to let that go. Really.) It’s not that we were fitness freaks (or not only, at any rate), but that we like sharing all aspects of our lives. We activate parts of ourselves out on the water or up on Mount Helena that are dormant during the routines of daily living. So we decided that my ridiculous illness has taken enough from us – like most of our money, vacation, and energy – and that it was time to stand up for ourselves.

Today, then, we made a childcare reservation for 10:00 and showed up with water bottles, headphones, and Andrew. Andrew knows that we go to the gym, and has even said, “one day, when I’m grown up, I’ll go to the gym, too.” Before we left this morning, we tried to hype what was ahead. “We’re all going to the gym together today, honey,” I said, my voice sliding up a few notes as it always does when I am trying to convince Andrew of something. “Won’t that be great?”

He strode into the daycare room with me on his heels. He was excited since he was finally getting to that mythical place, the gym, where exercise occurred. There was only one other kid there, a ten month old named Grace, and the facility had every imaginable toy truck and car, along with a three-story garage. I figured my little gear-head would think he had landed in paradise.

“OK, Andrew. I’m going to go get some exercise. I’ll be right out there, if you need me,” I said, pointing to the elliptical trainer five feet from the door. I should have just snuck out behind his back and gotten in five minutes next to Jay. But it always feels devious and cruel to just vanish on him.

His lip emerged, his voice quavered, and the water works began. “Noooooo, Mommy. Stay. Please.”

I know better than to reason with him, but I tried anyway. I would be right there. This was a kids-only room, so I wasn’t even allowed to hang out here. Look how nice the sitter is. Wow – check out that garage and that yellow taxi. He would have none of it. He shadowed me so closely, I could feel his hot breath on my calves. As long as I was sitting next to him, he was fine. The minute I even stood up, the crying began again. The worst aspect was how betrayed he looked. I could hear him thinking, “This is not what you promised.”

Jay took a turn back there with the same result. I tried again. We attempted to wait out the crying, but the sound of plaintive shrieking wasn’t enhancing anyone’s workout, including our own. “Geez, it sounds like they’re burning him with cigarettes back there,” the guy staffing the front desk said after a few minutes of this. It truly did.

“Enough,” Jay finally announced, and vanished back into kiddy-land. He reappeared with Andrew at his side. Now that we had taken him away from the inner circle of hell, the boy was fine, even chipper.

“I want to exercise,” Andrew said. Since the place was mostly empty and since, for a lawyer, Jay has a very nebulous sense of liability, Jay set Andrew up one treadmill while he started jogging on the other. I was directly behind Andrew on an elliptical trainer. Jay made Andrew’s treadmill go as slow as it could, but it was still a workout for our three-footer. He plodded along, his head barely reaching the handholds. His little sandals slapped against the machine. He was ecstatic. “Look at me, Mommy,” he shrieked. “I’m exercising.”

Andrew, being who he is, needed to oversee our workouts along with his own. “Don’t slip, Mommy,” he kept telling me, repeating the admonition his father had given him. When Jay slowed down to a walk, Andrew yelled, “Run, Daddy, Run.” Fortunately, our version was better than that pretentious German movie without dialogue. He stayed on the treadmill for a good fifteen minutes and then went off to “help” Jay do abs on the stability balls – which mainly involved kicking a giant blue ball into his father’s torso.

All told, Jay got in fifteen interrupted minutes of exercise – none of it next to me. When we returned home, I pondered our thwarted workout. A piece of me was disappointed that I didn’t get some time alone with my husband doing something we love. A piece of me was annoyed with my son, who seems to be more stubborn than Jay and I combined, and who can be thoroughly unhelpful when he sets his mind to it. A piece of me rebels against any situation that doesn’t resolve as perfectly as I have envisioned it.

The bottom line, though, is that we all had fun. I can’t blame (at least not too much) Andrew for not wanting to be stuck in some back room with a baby and a babysitter he’d never seen before, while we go off to engage in this mysterious concept of “exercise.” We’d told him this was an exercise outing, and he’s too smart to fall for ploys to convince him that his experience in the back was the same as ours up front. He is immensely strong-willed, and we’d promised him a trip to the gym, so he was going to get a trip to the gym, damn it.

I don’t think he necessarily views himself as a child, in the sense that he should inhabit a distinct sphere–a “kiddie zone”– that involves absurd cartoons, mediocre food, and adults talking to him like he’s an idiot. I’m not saying that he rules the roost. He listens to us and frequently obeys us, but he truly seems to see himself as an equal partner in our lives. In key ways, he reminds me of our beloved dog, Calypso, who is now residing at my parents’ ranch (story for another day there). Calypso never could acknowledge that she was a dog and we were humans, and that, as humans, we were entitled to do things like leave the house without her. This was an affront to Calypso’s sensibility, and she made this clear to us in ways that generally involved significant property damage. After years of dog training and expert advice, we just ended up taking the dog with us everywhere and you could see the relief in her eyes: “Finally, these morons got it.” There was a similar gleam in Andrew’s eyes today, when he wound up on the treadmill at last, exercising.

Our outing was a success in other ways as well. Too often, Jay and I let the perfect be the enemy of the good. If we can’t do something just the way we’ve always done it, then we might as well stay home and sulk. You’d think that after two years with a toddler (not to mention two years with a chronic illness, which constantly causes us to change our plans or just not make them in the first place), we’d have learned better. Maybe we’re slow on the uptake or maybe we’re just extra rigid. But something finally clicked in me today – sometimes it is just enough to show up to your life and leave the orchestrating for another day.

I have a difficult time with this. To say that I am a perfectionist is like pointing out that Joan of Arc was religious. The label just doesn’t catch the insane nuances. Unfortunately, the dark side of perfectionism isn’t that I accomplish a few things perfectly; it’s that I never finish a project because the results can never live up to my impossible standards. This has led me to delete entire drafts of college papers because the “words just won’t come our right.” It means I rarely clean my bathroom, because I’ll never be able to clean it thoroughly enough, and it used to mean that I shouldn’t even bother to start working out if I couldn’t complete at least 40 minutes in my zone. But apparently I’m getting better. Hopefully this personal growth won’t extend to include scrubbing my toilet.

We’re trying the whole daycare adventure again, by the way. But next time we’re going to use the branch of our gym that has the childcare room in the basement – far away from the workout machines and our ears. Andrew’s not the only stubborn one around here.

Permalink Leave a Comment

Next page »