June 14, 2006 at 10:25 am (Uncategorized)

Yesterday morning I felt fine.   This morning I have pneumonia.  Welcome to my wonderful world.

Around 11:00 yesterday morning I started to feel a little bit achy and lousy; by 1:00 PM I felt very lousy.  I took to my bed and thought I was just tired.  I even went and had dinner at a friend’s house.  I couldn’t sleep last night, though.  I had a cough and my bones hurt.  “Better go to the doctor,” I thought.  One chest X-ray and one meeting with my very cute doctor who looks like he’s about fourteen and I find out I have pneumonia.  How can this be?  Well, Dr. Doogie told me that prednisone masks the early signs of infection; this, combined with an underlying lung disease means I get really sick really fast.  Hip, hip, hooray!

Now it’s back to bed with me.

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The Freaking Liquor Store

June 13, 2006 at 10:31 am (Uncategorized)

We are delighted to be back home in Montana. The sky seems bigger, the air is cleaner, and I have Internet access, as well as the greatest thing in the world after grandmothers – a babysitter. Unfortunately, we also brought back a few bad habits from our journey east. After being home for less than 24 hours, Andrew has displayed a ferocious unwillingness to follow anything resembling a schedule. Here’s a sample of my day. “OK Andrew,” I say as sweetly as possible, my voice trilling up a bit. “It’s time for breakfast.” Or, “It’s time to go potty.” Or, “It’s time to get dressed.” Or, “It’s time to stop chasing the cat with the two giant foam sticks you pulled out of the garage.” The response to each of my motherly nudges: “NOOOOO!!!” Occasionally he adds, “I don’t want to.” I alternated between wanting to whack him on the head and bribing him to obey him. I did neither and just ended up feeling very tired.

He’s also expanded his vocabulary. From my mom, who spent the better part of a week in Philadelphia reading the same 20 books over and over to Andrew, he has learned that “halt” is a synonym for “stop” and that “rapid” means fast. From his Grandpa Steve and Grandpa Don he added “Times Square” and “Central Park” to his geographical lexicon. From his Uncle Isaac and father he picked up “bachelor party.” And from his mother, the person tasked to instill him with virtue and good manners, he got, “Oh my God. We’re back at the freaking liquor store.”

In my defense, Philadelphia has an awful lot of one-way streets that invariably went the opposite direction of what I needed. (For added fun, creative people in the neighborhood of our borrowed apartment also reversed many of the one-way signs.) If by chance I did end up on a major artery, it would usually mysteriously ferry me across a bridge to New Jersey. Also, the City of Brotherly Love seems to have ripped up most of its streets in “construction” projects that look like all the workers left for Mexico after digging giant holes in the middle of the roads; those streets not torn to shreds typically have large delivery trucks blocking the one existing lane.

After a few days of this, I was, shall we say, frustrated. I reached my nadir returning to our borrowed apartment after a long day of doctors’ appointments at Penn. I had just had a long tube with a light and camera attached to one end shoved up my nose until it came out in the back of my throat, while the doctor cooed, “This might be a little uncomfortable.” Then I had an hour of pulmonary function testing, in which I was locked in a little airless booth and had to blow into a tube while my nose was pinched shut with clamps. I lost my car in the parking lot, couldn’t find my wallet , and had a whopping headache. Then I had to drive around the City Next to New Jersey. I spent – and I kid you not – a good 45 minutes circling the neighborhood in South Philly where we were staying without once crossing the piddling street I needed. (It was a one-way thread of a street that ran for only one block between two other one-way threads of streets). Everything looked familiar – the park where people congregated to smoke pot five feet away from children playing on the monkey bars and where a charming four year old boy hucked a crumpled beer can at my son’s head; the laundromat where the Cambodian owners practically cried when I told them I had been to their country; the trash strewn everywhere, including the trees. But I could not find our street. I finally resorted to calling Jay in his office in Helena. I think my desperation came across the line loud and clear because he pulled up a satellite map and navigated me home. I love that man.

That evening, my Mom and Andrew and I went out in search of a grocery store. We needed dinner ingredients, and we needed something to drink. Well, I seriously needed something to drink; maybe my Mom was just being polite and going along with it. The nice lady who lived next door, and whose son we saw snorting cocaine off his dresser one evening, wrote down directions for us. We made it to the grocery store by navigating around semi-permanent barriers erected to contain a construction site. We found crab legs and salad ingredients. We found apples for Andrew, and Andrew found cupcakes for Andrew and was distraught when we didn’t put them in the cart. However, we did not find beer. Apparently, in Pennsylvania you have to buy all alcohol in state run liquor stores. “Fine,” we said, and got directions from someone in the parking lot to the liquor store.

Although the liquor store was in a strip mall directly behind our strip mall, every road between the strip malls and then all the roads adjacent to those were ripped up. So the directions took us on a wide circle of the neighboring streets, jolting across the rutted dirt that formerly paved roads had been reduced to by the ever-zealous Philadelphia road workers. We arrived, almost surprised that we hadn’t gotten lost. I could almost taste the local brew, a canned wonder called Yuengling, and waited in the car with Andrew while my Mom went in. She emerged empty-handed. In Pennsylvania, we learned, you must buy your beer at liquor stores distinct from the liquor stores that sell wine and hard booze. Even though there is not even a shadow of logic in this system, clearly, the state’s efforts to control drinking have worked. Now our little neighborhood’s apparent drug problem finally made sense. Desperate for a can of Budweiser after a hard day’s work digging asteroid-sized craters in their streets, and realizing that it would be quicker and easier to drive to New Jersey than to the liquor store a block away, the residents near our apartment have turned instead to using drugs in local parks. Hooray for blue laws.

Even though my mother bought a bottle of wine, I really wanted the frothy bite of a beer. So, armed only with vague directions to “the back side of this mall,” we set out again. “I don’t think we’ll make it before they close in ten minutes,” my Mom said ominously. “The guy at that liquor store said it would take us at least twenty minutes.” Twenty minutes? To drive around to the back side of the parking lot? I ignored her and bumped my way along for a good fifteen minutes–past the Ikea, past the brick wall, across the railroad tracks, near the Home Depot, to arrive…where we started.

“Oh my God,” I said. “We’re back at the freaking liquor store.” Andrew, who had fallen quiet in his car seat and was, I suspected, sleeping, immediately chirped, “Oh my God. We’re back at the freaking liquor store.” Then he said “freaking liquor store” at least fifteen times in a row. This was astonishing because for the past week he had developed an adorable (and, according to all the experts, totally normal) stutter, which made it tough for him to get any word out, much less phrases. But “freaking liquor store” emerged perfectly pronounced, without a hitch, every time. “Oh, honey,” I said, in a completely transparent attempt to repair the damage, “Mommies sometimes say things they shouldn’t say. Freaking is one of them. It would be better to say, ‘silly liquor store.’” I caught Andrew’s eye in the rearview mirror and knew that he wasn’t buying this for a nanosecond. “I like freaking better,” he said. And thus entered his new favorite phrase, which he offers up at all the wrong moments. I’m thankful that at least I didn’t say the more profane version of “freaking” that I felt like using and somehow didn’t.

Having my two year old son tell the flight attendant on the trip back home that “we’re back at the freaking liquor store” has quite rightly made me do some thinking about my role as moral guide and protector for my impressionable two year old. One moment of frustration on my part, and my kid now sounds like a hardened drinker. Now I know that he’ll forget this phrase in a few days or weeks if we stay mum about it. (Although he does still say, “Go Yankees,” after a friend’s children taught him this phrase seven months ago specifically to irritate my die-hard Sox fan of a husband. It continues to amuse Martha and Geoff to watch Jay visibly pale when he hears his son – his own son! – cheer for the vile Yankees.)

But I fear that there are pieces of this trip, along with all the other medical trips, that will have more staying power with Andrew. It’s become pretty obvious that the little guy is anxious about his mother’s health. One night in Philadelphia my Mom tried to entertain Andrew with the story of how I got pinched by a crab at the beach when I was a kid. Instead of finding this tale of his Mommy as a young kid funny, as he usually does, Andrew was horrified and started crying hysterically, wailing, “Mooooommmmmy.” I felt wretched. My two-year old shouldn’t be worrying about me. As a corollary to this, he has been clingy and needy. “Mommy, I need you,” has become standard parlance. He doesn’t want to sleep without me; even handing him off to Jay or his beloved sitter Andrea causes crying. I know this is partly due to this dislocation of travel and of having grandparents cycle through his days. In fact, he still starts each morning telling me, “I am sad today. I miss Grandma.” I know that learning to deal with change is an important part of growing. But I also know that my little Andrew has had to cope with far more disruption than a three-foot tall person should have to.

I don’t know what to do about this. I need to travel to get the care I require. The specialists in Helena sent me to specialists in Denver who sent me to specialists in New York. Getting local care is simply not an option. This means that every three months I need to go East. I’ve thought that bringing Andrew along is the best thing for him (and I’ll admit for me). Having one or more grandparents as part of the equation alleviated some of the stress on him, I believed, by making the trip more of a vacation for him. Now I’m reconsidering this. Maybe it would be better for Andrew to spend the time with my parents at their house or mine. I just don’t know. But I hate the fact that the tentacles of this disease have reached past me to ensnare first Jay and then our families and now, the most important person in my world, Andrew. It’s one thing to mess with me, but I feel like a Mamma Bear – albeit one shackled and caged by the confines of her biology – trying to protect her cub.

One of the hardest things about having sarcoidosis is slowly coming to realize that it’s not going to go away. Even in my last, mostly upbeat appointment with the cardiologist in Philly, I was told not to expect to get off prednisone (and this was presented as a best-case scenario). It’s finally sinking in that “chronic” means that the illness won’t disappear one fine morning. And apparently this means it won’t go away for Andrew either. I cannot convey how deeply this saddens me. Contemplating my future – and that of my precious family – sometimes feels eerily like navigating Philadelphia’s maze of streets. If I let my attention lapse for one second, I’ll be heading into oncoming traffic or sailing across a bridge to another state. I spend a lot of my time lost in the grid of illness. And all too frequently, I end up exactly where I started, back at the freaking liquor store.

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Good News

June 9, 2006 at 1:28 pm (Uncategorized)

Yesterday morning before I left the house, Andrew gave me a good luck drawing to take to my doctor’s appointment. It looked like a spirograph of vivid pinks and purples. “That is breakfast,” Andrew told me, when I asked him what he had drawn. “There’s the sausage, and there’s the egg,” he added, as he gestured at two particularly dense hot pink squiggles. The boy certainly draws what he loves — protein sources. And he certainly can make his mother cry. I felt like my heart would burst when he handed me that picture. He is overflowing with sweetness.

Andrew’s picture worked its charm. For the first time in a long time, I got good medical news. From now on, whenever I leave for an important doctor’s appointment, I’m propping Andrew up in front of his easel first. Maybe if he drew me lunch and dinner I’d be completely cured.

I met with the cardiologist who works with the pulmonologist who specializes in sarcoidosis at the University of Pennsylvania. I often think back fondly to the days when I had only one doctor, instead of a team of physicians each specializing in one organ of my body. I liked Dr. Brozena, the cardiologist, tremendously — and not only because she said that I could try another prednisone taper without immediately adding another toxic drug to the mix; without soldering metal to my heart in the form of a defibrillator; and without cutting away bits of my heart muscle to biopsy. She was funny and thorough and listened to me. She rightly assumed that I knew a lot about my disease and didn’t seem a bit put off by my three-page list of questions. Plus, she likes fly-fishing in Montana. Wow – I’m surprised they haven’t taken away that woman’s medical license yet.

Her plan is to cut down my prednisone even slower than last time, when I failed to get below 20 mg. For the first month of the taper, I’ll have to wear a monitor to check for any weird heart rhythms. If things don’t go well, the other three options will come out of the pantry and be back on the table. I’m having a stern chat with my heart as I write. “Now listen to me. You better behave. Don’t blow this again.”

It’s been a while since I’ve gotten good news, so I’m not sure exactly how to act or feel. I am relieved and thankful that I’m not being operated on right now. I feel grateful for finding a pair of physicians in Dr. Wasfi and Dr. Brozena who I like and trust and who have, for the first time in a over a year, given me a plan. I am hopeful that my health will continue to improve, that the sarcoidosis in my heart will go into remission, and that in a year or two I’ll look back on these times through the funhouse mirror of distance and think to myself that it all was a bad dream.

But I’m not dancing around the hotel room with joy. If there’s one thing I’ve learned after two years with this weird sickness, it’s that steps forward often are followed immediately by a backslide. If you hope too much and invest every small gain with too much significance, you won’t be able to bear it if things take a turn for the worse. I’ve learned that the hard way.  So my optimism is measured.

Perhaps I’m being too grumpy or pessimistic, but I’m still figuring out how to have a chronic illness and not make myself crazy. One key strategy is to do as I always have on long hiking trips when I’m exhausted and still miles from the campsite. I look at my feet and focus only on putting one in front of the other. I don’t think about the trail or whether I’m climbing up or down; I just keep on plodding. Yes, I can barely wait to drop down a tiny bit on my prednisone. But I know that it’s likely a windy, hilly path ahead. I need to return to Philadelphia in three months for more testing, including new neurological work to address my numb leg. One foot in front of the other.

Before we head home to Montana, we’re spending the weekend in New York with two of Andrew’s three Grandpas. We’ve promised Andrew horse rides in Central Park along with hot dogs and maybe a trip through the new miniature Victorian village. I’m happy with my good news, but my goal is to forget about all the health stuff — positive and negative – for the weekend. I just want to be a tourist.  And the mother of the best (and sweetest) little artist in the universe.

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June 8, 2006 at 11:57 am (Uncategorized)

The other morning Andrew ran into my mother’s room in our borrowed apartment, hopped into her bed, and proclaimed, “I really like being in Philly.”  I’m glad that someone around here is having a good time, although I’m a little perplexed about exactly what, besides Grandma, is so awesome about Philadelphia for my two-year old son. 
My best guess is that in addition to the greater variety and frequency of motorized vehicles passing him here than in Helena, he’s thoroughly enjoying the lack of structure.  At home, bedtime is (theoretically) enforced, as is naptime and mealtimes.  Here, he gets to stay up late reading books, having pillow fights, and weaseling one more bedtime story out of either my mom or me.  Because the time change has screwed up all of our internal clocks, I tend not to worry if he’s still running around at 11:00 PM and is napping until nearly 8:00 PM.  His diet is a lot looser here too.  I wouldn’t say that I’m a food Nazi at home – more like one of Mussolini’s Black Shirts.  Not much junk food; fruit and veggies with every meal; water or rice milk to drink; and a nutritious, organically-raised protein source.  Here, he can have a burger and fries twice a day, and I don’t bat an eye.  A calorie is a calorie, I tell myself, even if it comes from a potato chip or a cookie.  I’ve drawn the line at soda, though.  Well, and double lattes.  He also gets a bunch of toys for simply keeping quiet and not acting like a cannibal on the airplane flights. 
Andrew’s delight in a less rigid existence makes sense to me.  After all, some of my own best childhood memories were from summers when my three siblings and I, along with other kids on the block, formed a roaming pack that simply “did stuff.”  I also loved days when my mom would drop us off at the pool and we would spend hours floating in the water and getting sunburned.  No camps, no routines, no activities – just time unmoored from obligation.

Now that I’m an adult, though, life without a schedule has lost its allure.  Unlike my freewheeling toddler, I don’t really like being in Philly.  My only task for these eight days is to show up on time for doctors’ appointments or tests.  You’d think that with this open range of time to wander about in, I’d feel rested and refreshed.  Instead I am exhausted beyond reason, moody, and overwhelmed.  I want to go home. 
I’m convinced that structure is what keeps most of us sane by trammeling the realm of the possible.  Without it, we would be overwhelmed with the range of possible options for what to do with the next minute.  And if you are like me, that overwhelmedness would translate into three slices of chocolate cake in bed and a nap rather than in doing too much.  I guess there are some people who can twirl through the universe without schedules or obligations, but I’m never sure they’re happy as much as they are simply unfettered.  We all say we want nothing but time, but once we get it (in the form of a long weekend, a vacation, or retirement) we usually bottle up the sea of time into something more manageable – structured activities, classes, or even something as small as going to the same café every morning to begin the day.  I like to think there’s a global undercurrent to our marking up time.  Whenever I read Genesis, I’m struck by how God spends most of his efforts separating and segregating aspects of life from one another.  Can’t you almost see him with his Palm Pilot creating the world, structuring the universe and time into those bite-sized bits we arbitrarily call days? 
One of the more difficult aspects of feeling lousy all the time, as one often does with a chronic illness, is the havoc it wreaks on this planning and structure that seem so fundamental to the human psyche.  For the past couple of years, I have had little success in keeping any sort of momentum going — professionally or personally.  Take these sojourns to the other side of the country.  “What’s the big deal?  You’re only gone ten days.” I can hear someone saying.  “Why don’t you think of it as a vacation?”  Well, for one, Philadelphia is not my first choice for a vacation site.  Don’t get me wrong; I’m sure this city has many lovely qualities.  I’m just not getting to see them as I wander through the basement hallways connecting the seemingly infinite number of dreary buildings comprising Penn Hospital.  And nothing against the city of brotherly love, but there are other places on my “to go” list I’d rather visit first. 
Also, ten days in medical and structural limbo is a lot of time to leave behind the recognizable trappings of order in my life, especially since I lose two more days traveling and a day on each end of the trip packing and unpacking.  I can almost guarantee that I will pick up some vile germ on one of my flights (in fact, right now Andrew and I are enjoying a delightful stomach bug) that will further slow re-entry to normal life.  The upheaval of traveling throws Andrew off for at least a week afterwards.  He is surly, temperamental, and very insistent that a new truck will help him stop yelling.  He also demands hot dogs for three meals a day, and his favorite phrase becomes, “I want it.”  Just thinking about post-trip Andrew makes me want to sleep — for a very, very long time.
Finally, fourteen unmoored days every year — spent neither in the pursuit of pleasure or profession – wouldn’t be that bad, but having to do this every three months is beginning to wear me down.  It’s not like I relish meeting the White Coats and getting shot up with the latest dye and filling out the same freaking form yet again.  The psychic toll of these trips lasts much longer than their real duration, particularly when I remember that I will likely have to make these quarterly pilgrimages to places I don’t want to visit for the rest of my life.
Before I embarked on this trip, I set as a seemingly manageable goal of not losing my focus on my life. On these long medical trips, I usually forgo exercise, writing, reading anything other than trashy magazines, and thinking about the caloric content of anything I put in my mouth.  I typically spend my spare time either worrying or avoiding worrying — enter the eating whatever I want and the trashy magazines.  I’ll say in my defense that I’m usually kept pretty busy with a fun-filled itinerary of tests, tests, more tests, and a doctor’s visit, but, still, I surrender to the chaos with too much readiness. 
So in keeping with my resolution, I brought along reading I have to plow through before I begin writing a magazine article with a fast-approaching deadline, as well as my laptop to work on this blog.  I also packed my heart rate monitor, my running shoes, and my iPod to make sure I got in five workouts a week.  But, as it usually happens, my best-laid plans had unwoven themselves before I’d even enacted them.  Since we left the hotel, I have no Internet connection; the laptop I’m using is capricious; and my articles are putting me to sleep.  Also upon leaving the hotel, I’ve lost easy gym access.  I called around town today and discovered that the going rate for a day pass is $25, which is way out of my budget.  I found one place that was mysteriously offering free 7-day passes – and it’s called “Sweat” to boot.  But it’s way across town, and by the time I’m done with the doctors, I shudder at the thought of negotiating Philadelphia’s maze of three-foot wide one-way streets clogged with angry people with dubious driving skills all in a hurry.  Plus, I don’t want to stick my Mom with Andrew for the entire day and then flit off to the gym in the evening.  Well, actually I do want to do that, but it sure doesn’t seem nice. 
Losing control over the plans of daily life isn’t something peculiar to medical travel, though.  Since getting this disease and getting Andrew, I start each day with what feels like the giant spin of the energy roulette wheel.  Will I feel crushing fatigue the minute I open my eyes? Will I have aches and joint pain that make it hard to walk around the house? Will going to the gym loosen me up or make it worse? Will I get a migraine? Have I caught some other illness that will make me stay in bed?  How numb will the left side of my body be from the peripheral nerve damage from the sarcoidosis and will it cause me to trip and fall on the stairs yet again? If I push myself to work, will the psychological benefits of accomplishing something outweigh the invariable physical crash?  Or, will I feel fine when I awaken, ready to greet the world with some pep in my step?  Can I stop worrying about how I’ll feel and just get out and enjoy the day?  It’s hard to make plans, meet deadlines, or even schedule a meeting when doctors’ appointments eat up most of the time with my babysitter and I often feel like I can’t keep my eyes open and my limbs functioning when I’m actually home.  
I really want to delete the prior paragraph because I sound like one of those people that I used to inwardly roll my eyes about before I got sick.  I would hear about people with chronic fatigue syndrome or a similar condition and think to myself, “Well, that’s not a real illness.  You’re either sick or you’re not.”  Wow.  Sometimes when I ponder the asinine thoughts that passed through my pea-brain before I had sarcoidosis, I wonder if perhaps contracting this disease is a bit of karmic alignment.  But at least the forces of retribution let me have a medically confirmed weird disease.  I can’t imagine how hard on myself I would be if I had morons telling me I wasn’t “really” sick every other day. 
I’m keeping the paragraph because it sheds light on life without momentum — which in my view is one of the defining aspects of a chronic illness.  It’s a lot easier to get up and go to work every day when you’ve been getting up and going to work; the first two weeks of an exercise program are the hardest, say the professionals.  After you’ve gotten into a routine, going to the gym becomes a habit.  Living with constant sickness (or the threat of constant sickness) means that every activity of every day has to be begun anew.  It’s an extremely good week for me when I’m not too sick to miss at least one day of work.  I feel like a long jumper forced to begin my leap without a running start.  “Jump!” I scream to myself, but my legs are mired in sand. 
Jay often says that I have unrealistic expectations for myself on these trips.  He counts keeping myself sane as an achievement when I enter the land of the doctors.  He says I should be much more patient with myself when I’m sagging a week after our return, and sometimes he’s right.  About a year ago I had to have a spinal tap done in Denver.  Being me, all medical procedures must necessarily result in the worst possible outcome, which in this case, meant the hole reopened somewhere in Wyoming on the drive back home.  I had the most excruciating headache in my life near Cheyenne (and I get bad headaches a lot), so Jay pulled into the emergency room, where they patched the hole in my spine with spinal fluid they took from another part of my back.  Double yuck.  Anyway, I was working on a reference book then and became extremely angry with myself for not getting right to work the next day and for feeling lousy for a while more.  In retrospect, that was weird behavior on my part.
But I do think I can do a better job of at least pretending to have structure on these trips.  Otherwise, I’m going to feel like Andrew when he’s sitting in the swing at the park and desperately wants to be flying as high as “Charles Lindbergh’s plane,” as he says.  Without a nudge from me and without that beautiful momentum to keep him going, though, he’s stuck in limbo — his legs dangling in the air, but decidedly earthbound.  I’m not asking for much from myself, I think, just a little nudge to keep me going.  I don’t need to go as high as a rescue helicopter, which Andrew also likes to tell me.  I’ll settle for somewhere near the treetops.  Is that too much to ask?  Who knows.  But tomorrow I’m going to the gym.

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The Mall

June 5, 2006 at 1:39 pm (Uncategorized)

I’ve had some down time in Philadelphia. One doctor could only see me last Friday, and another only this Thursday. I have a couple tests and one other appointments in between, but I still have plenty of hours to spare. So I’ve done what any sensible woman with a credit card and time on her hands would do – shop.

Before we moved into my friend’s brother’s apartment in downtown Philadelphia, we were staying in King of Prussia – home to the world’s second largest shopping mall. It just doesn’t get much better than that, especially when you hearken from Montana, where retail therapy is limited to Wal-Mart or Target or, if your husband is in charge, Home Depot. King of Prussia, on the other hand, has a Nordstrom’s and a Macy’s and a Bloomingdales and a Lord and Taylor, and pretty much every other chain outlet found in every other mall in America. (Who knew Pottery Barn had launched a children’s store, stocked with shockingly expensive overstuffed armchairs for the two-and-under set?) The King of Prussia mall is so big it’s practically a town; in fact, you have to drive between mall segments.

My mother and Andrew and I went to the mall with a single objective – to find a dress to wear to Jay’s brother Isaac’s wedding next month. Isaac’s bride, Rayna, is incredibly mellow – so mellow, in fact, that I’m wondering if they’ve already eloped and are making us fly to North Carolina in July for a potemkin wedding – and has given me free reign in choosing what to wear, even though I’m sort of in the wedding party. Everyone else up front will be wearing back and white, so I figured I should blend in. And how hard could it be to find something floor length and dressy in black and white, right?

Well, pretty darn hard if you’re bigger than a size fourteen. What should have been a lovely day playing hick amid the retail cornucopia of the King of Prussia mall turned into a frenzied quest for a dress that wasn’t utterly ridiculous looking. And like all true odysseys, this sartorial one had less to do with the end result, which turned out to be $500 worth of clothing, and more to do with confronting the darker aspects of myself and the world I encountered along the way.

I should note here that I haven’t always been, um, plus-sized. I’ve never been what you would call a delicate wisp of a girl, since I’m nearly 5’10 and have a sturdy build. But I’ve been as low as a size six and, prior to my adventures with prednisone, only as high as a fourteen. Shopping in the Woman’s Department, as they so politely call the clothes for fat people, is a new experience for me.

The name of the department is practically the only thing tasteful about clothes for fat people. In store after store, we found nary a dress, only “separates, ” consisting of elastic-waisted polyester skirts or pants combined with flimsy tops. I finally turned to my mother and asked her, “If you are bigger than a fourteen are you supposed to stay home from formal events?” Apparently, you are, unless you want to show up in knitted separates. You are also not supposed to wear pants that reach your ankle, given the almost exclusive reign of Capri pants; nor are you able to put on a top that doesn’t have some weird combination of sequins and lace. Simple designs, quality fabrics, and clean lines are not for fat people. What we do get looked to me to be very large versions of children’s clothes: flouncy skirts; ruffled tops; wild prints studded with rhinestones and sparkles. I would have found my dream wardrobe, had I been seven years old.

The infantalization of fat clothes began to feel like a conspiracy about the time I had tried on my fourth pair of Capri pants and my twentieth too-tight lace top. I became convinced that these clothes were designed to minimize the female form – at its largest and lumpiest. These pants and tops took the big woman’s body and tried to make it littler and thus more manageable.

I’m sure my interpretation of these design choices is colored by my years in the post-modern academic world of Berkeley. When I was in college, if you didn’t mention Foucault in a paper, you might as well just give yourself a C. As a result, I tend to view reality with an eye towards the mechanisms of power at play beneath a seemingly harmless, or at worst annoying, façade.
This has the potential to border on paranoia. So, yeah, I was probably stretching things by thinking “conspiracy” – but given what the spandex Capri pants on my long legs were doing, stretching seemed to be the order of the day.

I do think I was on to something in the child-like quality of this clothing, though. As a culture we assume overweight people are childlike in a number of ways – overindulgent, impulse-prone, lazy, pleasure-loving, unable to know their limits. Perhaps designers created fat clothes to psychically fit their image of a fat person – a giant child in need of restraint and guidance. Hence poofy skirts and sequined tops. Hell, I’m surprised I didn’t find a tiara in the middle of Macy’s.

Whatever the reason behind the ludicrous clothes I tried on, I wasn’t the only one who was getting angry at the choices. “This is absurd,” a woman said to me at one point. “I need to find something to wear to work and these pants are just silly.” My mother had a conversation with another woman who told her, “Just because we have large shapes doesn’t mean we don’t have any shapes at all.”

I’d bet, though, that all these furious women lost their piss and vinegar once they got behind the dressing room door. I know I did. My rage against the clothing and the evil merchants who selected them turned into a bitter self-loathing. “How could you let yourself get like this?” I asked myself over and over again. I forgot that I had a lot going on in my life, particularly my daily horse dose of prednisone, which has contributed to me being heavier. I forgot that I had a wonderful husband and son who loved me even with dimply thighs and a thicker waist. I forgot that no one was going to be looking at me at Isaac and Rayna’s wedding anyway. The spotlight would be on the bride; who would notice the cut of a chuppah-holder’s dress?

If my mother and Andrew weren’t along, I would have bolted from the mall in the middle of my Macy’s experience. I was working through an enormous pile of clothes, not one of which looked even reasonable, much less attractive on me. It was either little girl’s styles or sack cloths and not much in between. The dressing room was hot, and the mirrors and bright lights accentuated every flaw in my flesh. “I think I’ll just wear the skirt and top I found at Talbot’s,” I told my Mom. “It’ll be fine.”

But I think my mother saw that I wasn’t just tired and sick of shopping. Instead I was getting sick of myself and sick within and that if I fled now, I would carry the shame of the day I could find nothing to wear with me for a long time. So she did what all mothers have the capacity to do. She made me gut it out. “Just one more store,” she said through about thirty stores and thirty piles of crappy clothes. Andrew kept me going by picking out his idea of pretty clothes for Mommy. Invariably they were gold lamé, very tight, and reminiscent of my Barbie’s dress-up clothes. He also hucked hangers across the dressing room and said, “I don’t like this place” in Macy’s – a sentiment I couldn’t agree with more.

It wasn’t until we hit Nordstrom’s that I took a real breath for the first time in a couple of hours. There was a real live salesperson who brought me dresses to try on. The aisles were wide and piano music tinkled in the background. Even better, I felt like a paying customer with needs and rights, not some embarrassment to be cloistered back in a segregated space for fatties. Charlotte the saleslady told me what looked good on me, what looked lousy, and why I should stop getting down on myself. “Just because you’re bigger than a size fourteen doesn’t mean you can’t look beautiful and stunning,” she said. We picked three dresses for the wedding festivities. (Since marrying Jay, I’ve learned that a Jewish wedding just isn’t a wedding unless it consists of enough events to require the guests to acquire an entirely new wardrobe.) I have to say, I look damn good in each outfit, and the one for the wedding is even black and white and floor length.

I want to lose weight. It would be good for my health to lose weight. I think I look better when I am thinner. But no one should have to look like an idiot, and be treated like an afterthought, because they wear a size sixteen – or a size thirty-two. The self-loathing that attire inspired in me that day did nothing but make me want to eat a few dozen brownies. You can’t look good – and you can’t move forward – if you are filled with self-hate.

In my darker moods, I sometimes think that god is teaching me a lesson with all this prednisone-related weight gain. I used to be one of those bitchy and obnoxious women who thought that weight control was always a matter of self-control. If you were fat, it’s because you ate too much and didn’t work out. How utterly lacking in compassion and common sense I was. I’m almost (but just almost) glad I’ve gotten to experience life among the larger. Now I can recognize a prednisone-puffed face across the room. I can also spot the look of timidness and the hunched shoulders in big women who think they shouldn’t be so big. It sucks. And I’m sorry for the prissiness I must have conveyed a few years ago.

As it is, I think women who wear a size larger than fourteen should start demanding reasonable attire in an ambience like the rest of the store. We’re not children; we’re not large bricks in need covering. We’re people with breasts and waists and legs who want to look pretty and normal. Don’t make us even freakier than we are. And please, make long pants.

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The Kindness of Strangers – And Familiars

June 2, 2006 at 2:58 pm (Uncategorized)

Greetings from Philadelphia. The skies are leaden and the air humid in this City of Brotherly Love. With weather like this, no wonder people heeded the cry to “Go West, Young Man!” Montana feels very far away. And extremely dry. And extremely sweat-free. Leaving aside my gripes about the climate, my experiences here so far have prompted me to turn my thoughts to the nature of the bonds – brotherly and otherwise – that connect us.

Andrew and I arrived safe and sound. We met my Mom in the airport, and we all somehow survived the drive down I-95 in my sleep-deprived fugue state. (A note to all you urban East Coasters – You’re lunatics behind the wheel. Are you opposed to staying in one lane for more than 5 inches? And slow down! ) But I was happy even as I clenched the wheel with sweaty palms because despite my earlier neuroses, Andrew had been a champion traveler. He was bubbly and excited to fly, and, more importantly, he sat still. Our seat mate, a single 50-something man who flashed (but then contained) a look of dread when he first sat down next to us, told me upon landing, “You have the most amazing child.” “I know,” I replied. No. I didn’t say that – really. I only thought it, but I did say thank you. I do have the most amazing child. Of course, today we’re paying for all his sky-high good behavior with the release of his pent-up energy in a confined hotel room. I didn’t know it was possible to jump so high on a bed.

I truly am grateful that Andrew is here with me, though, even when he is damaging the springs of someone else’s bed. Whatever I lose in sleep, I gain ten-fold in his sweet face reminding of what is important. When I feel my blood pressure rising and my heart rate skittering, he centers me. He helps me not sweat the small stuff (or too much of the big either) and focus on the essentials – like kissing Percy, the hard, plastic train from the Thomas the Tank Engine series, and reading Richard Scarry for the umpteenth time.

Andrew could not be with me if my Mom had not given up eight days of her life on her ranch to squat in a hotel room with her mood-swinging daughter and very busy grandson. Today when I went to the doctor, I left him without a worry with my mother. Her leg is in a cumbersome boot for an orthopedic injury, but that hasn’t slowed her down. She’s still running after my rug rat and keeping him happy and occupied. There is also something innately calming about mothers. The same urge I felt when I was nine and puked in school and knew I just needed my mommy hasn’t fully gone away. I can come back from the doctor, who told me that I shouldn’t be “shocked” if the cardiologist recommends implanting a defibrillator, and one hug makes everything feel more manageable – not perfect, mind you, but not cataclysmic either.

I miss Jay, of course, but I’m able to talk to him as often as I need to. To a certain extent, I think today – like many other aspects of watching someone you love with a chronic illness – was harder on him than it was for me because he feels helpless. Like the rest of the male population, he wants to “do something.” Whenever we go to doctors’ appointments together, he’s able to ask questions, hold my hand in the office when it gets frightening, enfold me in his arms after, and then, most importantly, drive me to a Starbucks for a latte and the most fattening pastry on the shelf. Nevertheless, last night, we worked on our list of questions together so that I felt prepared for the meeting with the doctor. I’ve given up on having actual control of my life and now I just aim for the illusion of it. Having that folded list in my hand reminded me that I’m not merely a passive player in the game of chronic sickness and that I’m not contesting it alone.

It’s not just friends and family who support me, though. Whenever I travel long distances for medical care, I am amazed at how kind perfect strangers can be – and how these “random acts of kindness” (to resort to clichés) are staggering in their impact. For instance, Miguel, the guy at the Enterprise car rental counter, took pity on me because of the amount of luggage we had and gave us a bigger car at no extra charge. Then he spent half an hour in the damp Philly air loading and then unloading and reloading our suitcases because even the bigger car could barely accommodate all the crap I lugged across the country. “Big deal,” you could sneer, but it was a big deal. I was thoroughly exhausted and overwhelmed by the time we made it to that rental counter. Anxiety breeds and feeds on itself, so I was ready to run back to the airport and beg to be taken someplace where the humidity is less than 1000 percent and doctors are outlawed. After the car was all nicely loaded, though, my attitude had so improved that I thought to myself, “I can do this.”

In another example of the kindness of strangers, my Helena friend, Martha, (an entire support system in her own right) put me in touch with her brother, who I have never met and who has an apartment in town that he just finished remodeling and won’t be using for a week. If I had a beautifully restored townhouse, I would never let a toddler inside for five minutes, much less hand over a key to his parents who I’ve never seen. But that’s just what Martha’s brother Ben is doing. Tomorrow we’re going to move into the apartment and save about a thousand dollars on hotel bills. And he didn’t stop there. He told me exactly where to go to get the best bowl of phô, the best Vietnamese shrimp roll, and the best Asian groceries to take home with me. I promise not to let Andrew jump on his beds.

I’m sure by now, my friends and family at home (who I have been too tired to call, despite the fact that I promised I would) are saying, “Enough of this crap! What did the doctor say? Are they amputating your heart or what?” I guess my point in writing in this roundabout way isn’t simply that I am too tired to connect my thoughts, or that I’m too distracted to proofread this because I somehow left the cord to my borrowed laptop in Montana instead of bringing it with the machine (though I do have a small library’s worth of books for Andrew) so I am squatting on the hotel computer. Rather my point is that I’ve realized that to a certain extent, it doesn’t matter what the doctor said because with this wave of goodness around me and under me (and in the case of Andrew, digging its knees into my stomach), I can handle it. I think. Don’t hold me to this if I get bad news later in the week.

Anyway, what the doctor said was…wait until you see the cardiologist on Thursday. But she was able to explain to me why we needed to have the cardiologist’s assessment in hand before plotting my treatment course. Here are the various options: 1.) I begin another prednisone taper, but wear a holter monitor at first to make sure no significant arrhythmias crop up; 2.) I begin another prednisone taper but also begin a second drug to target the sarcoidosis in my heart; 3.) I have a heart biopsy because there’s not enough information to assess what the hell is going on in my heart; or 4.) I have a defibrillator implanted. I’m hoping for door number one.

My doctor in Philly is extremely good at presenting what is known about my specific manifestation of this disease, what cannot be known, and what we can try to figure out. She’s not a touchy-feely chummy doctor, but she’s kind and thorough and remembers my case history better than I do. I don’t think I can ask for much more in a physician. Except for her to move to Montana and devote herself entirely to my care. I proposed this, but for some reason, she didn’t sign right up. I told her it was a heck of a lot cooler and dryer out in my part of the world, but that didn’t sway her. Maybe she’s happy here, in this city of brotherly love.

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